Outings with Kolya

A week ago today my friend, Beth, and I went to Kolya’s care home for a scheduled outing. We had planned to do an activity Kolya would enjoy and take him out for dinner. I texted two staff members that we were on our way so Kolya would be ready to leave for his outing.

When we arrived, all seemed to be quiet at the house. Normally, there are several cars parked outside but last Sunday there was only one car. We rang the doorbell several times and I knocked several times too. We waited well over fifteen minutes but no one answered the door. We finally gave up and came back home very disappointed to have missed seeing Kolya and my other son, Rusty.

Several hours later, I received a text from the administrator of the home to tell me Kolya was there waiting for us. I was told staff didn’t hear the doorbell or hear us knock. I find that hard to believe but I guess I must accept that as the truth. I notified the social worker with Good Shepherd Fund (gsfcare.org) on Monday and she was able to speak with the administrator to find out exactly what went wrong and how to make changes so this wouldn’t happen again.

I was so stressed Sunday evening thinking how Kolya must have felt. How would I be able to explain to him a that we were at the door but no one answered? The transition of placing him under the care of others is stressful enough without having things like this happen. I certainly do not want to experience this again and I’m am sure Kolya doesn’t either.

I had several large bags of recycling to take to Kolya’s day program at the Morgan Autism Center  for the clients to sort and take to the recycling center. Therefore, I had reason to go to San Jose. I made arrangements to do that on Friday and also to have lunch with Kolya. Of course Beth came along and we had a good time.

Marian and Kolya

Marian and Kolya

We ate our picnic lunch in a park that is right beside his program. Visiting with other clients also gave us a chance to see how some clients interact with Kolya and take him under their wings, especially a couple of the ladies who have mothering characteristics.

I’m sure Beth and I will make plans to periodically meet up with Kolya again soon, whether it be at his care home or at his day program. Transitions like this are hard for me but overall he seems to be doing well, for which I am thankful.

Thanks to our friend, Beth, for taking all the photos in this article.  

This salad looks good.

This salad looks good.

Oh Mom, why did you let the grape roll away?

Oh Mom, why did you let the grape roll away?

Kolya loves to laugh at other people’s mistakes.

Kolya loves to laugh at other people’s mistakes.

Posted in Kolya | 4 Comments

Another Move for Alan

I feel for Alan. His life has been rather complicated with the number of moves he has made since birth. First, he was in the foster care system for several years in his birth state of Connecticut. He was then adopted by Jim in 1983 and moved across country to California. Fortunately, Alan lived with his adoptive family until into young adulthood (I entered the picture as mom in 1985). 

Alan as a child

Alan and Ben at my wedding.

Jim was Alan’s primary caregiver while living in the family home but Jim was having some health problems. Since Alan was now a young adult and no longer in high school and Jim was struggling to keep up with his care, we decided to move Alan into a terrific group home where his physical, emotional, and social needs were met by a fantastic couple who owned the home. He lived there for several years and did quite well. However, because of the location of the home and some conflicts with the physical structure of the house, Alan (Donald who was also living in the same home) needed to relocate on a short notice. Both returned to Los Altos to live temporarily, which ended up to be several years, with me as their mom/caregiver. For the first time since their adoptions took place, Alan and Donald actually had their own bedrooms.

I might mention that there are different regulations for care facilities in different areas, even in the same city. For example, emergency exits, where to place ramps, screen doors versus no screen doors, sprinkler systems, arrangements of bathrooms, and the list goes on. To make things more ironic, the structural reason why these sons needed move was not something I could offer with the structure of our home either: no sprinkler system. Our house is not a licensed home. We are a family home without set regulations for licensing requirements.

After a couple of years a place for Donald was found. Finding a place for Alan was more difficult because of his specific care needs. With the help of Alan’s Regional Center case manager and the social worker for conservatorship, we were able to move Alan when a bed opened up where Donald lived. Once again Alan and Donald shared a bedroom. In addition to moving to a new home, Alan began attending a new day program. New staff and caregivers all at once. It was a day of mixed feelings for both of us.

I tried my best to demonstrate feeding, physical transfers, administering his medications, communication, and everything else I could think of to make Alan’s life safe and positive. Regardless of how hard I tried, my son who had been healthy with no hospitalizations for more than thirty years had several trips to doctors and visits to hospitals for various reasons the next several months. Some of these incidents I wasn’t even aware of. In the spring of 2019, Alan was admitted yet again to a hospital that resulted with him being in severe septic shock. His life was changed forever. 

Alan ice skating

Happier times with Jen and Alan ice skating

I again became more involved in making decisions about his care and what to do when he was ready to be discharged from the hospital. Cognitively, Alan was still intact, alert and aware of what was happening and making his desires known. He had developed deep, open bedsores while in the hospital and to my knowledge he hadn’t ever had open wounds or sores before in his life. He could barely swallow and had lost a significant amount of weight. It appeared his life expectancy had become less than six months. Of course, he wanted to come home on hospice care and that’s what happened – more than three years ago. 

Alan arriving home

Alan arriving home

Not many people remain on hospice care for that long. Since Alan had become more stable, hospice needed to stop. There was no reason to validate that he required hospice care, according to the hospice agency. His wounds continued to be a problem, no matter how diligently we worked to improve his positioning and dressing changes. Since hospice care would stop, it was necessary to make decisions about Alan’s future.

Vanessa, our conservator representative social worker with Good Shepherd Fund and the San Andreas Regional Center nurse and case manager arranged for a meeting to take place at our home, along with the nurse and social worker from the hospice agency to discuss the level of care that Alan required and how his needs could be met outside of the home. We learned there was an opening in a licensed home not far from us that served adult clients with medical care needs. There was a ton of paperwork to be completed before Alan could even be accepted into the home. It seemed like every time that paperwork was submitted, a new request for something else was made and this continued up to the moment Alan headed out the door of the family home. Yesterday he began a new chapter in his life. 

Alan waking up

Alan waking up

Alan’s new residence is about a fifteen minutes drive from our house. I had my van loaded with his belongings and the administrator and one caregiver from the home transported Alan in their wheelchair van.

Alan arriving

Alan arriving at his new residence

outside front door

Alan outside front door with Mom and Vanessa, the GSF worker

The home is spacious, clean, organized, accessible, and in a nice neighborhood. One advantage of homes like this more caregivers available. Perhaps Alan will get more attention than what I was able to provide as a single caregiver to many. There is a nice backyard with a patio area to spend time outside in the summer.

Alan has his own room, as he did here. I am hoping they will be flexible in the way his things are set up. For example, angling the bed so he can see the TV better because of the way his head turns to the right. Of course, everyone will need to learn his way of communication and his likes and dislikes for TV programs. Alan, as you know, is a bright and social being with a sense of humor and who likes to be included in activities. My desire for Alan is to continue to be as involved as he can possibly be under the circumstances and events of the past.

Here are some photos of Alan from the last three years.

Alan laughing

Ben and Dustin hanging out with Alan.

Alan

Betsy and Clay stop by.

Alan grinning

Matthew and Alan listening to music.

Alan smiling

New vinyl album from his friend Neil Young.

San Francisco Giants

Forever a Giants fan

Dinner

Happy Thanksgiving!

Pie Happy

Alan enjoying Thanksgiving.

Alan and coffee

Merry Christmas!

Happy

Alan once won a prize for being the messiest eater at a father’s son dinner. I can’t argue with that.

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Kolya Marches Forward

Kolya

Kolya

On October 23,1992, Nikolai, better known as Kolya, entered my life when he arrived to our home from an orphanage in Siberia. We were told he was deaf, but in reality he is the opposite with extremely sensitive hearing. This little guy couldn’t sit independently, had never been offered solid foods, had poor head control and made no eye contact. He responded very little to human voices but reacted to mechanical sounds. He was petrified of water and the list is endless.

As I sit here at my computer, my emotions are running rampant as I recall so many frightening moments over the years. Story after story of dangerous adventures Kolya would initiate and follow through with. To mention a few:

  • being found on top of someone’s house roof up in the hills
  • escaping from a hotel room while we were traveling and was found playing in a muddy ditch along the interstate
  • jumping a fence when his one-on-one aide turned her back when kindergarten age and entered someone’s kitchen through an open door
  • crawling under the house via a crawl space that was barely visible
  • climbing the neighbor’s redwood tree, and so many more.

Remember this is a child doing all of these adventures sans arms. It’s a miracle this fellow is still among us today!

As mentioned, my emotions are rampant this week and I have experienced great sadness because Kolya is marching forward and has left an empty space in our home, especially my heart. Sunday, he moved into the care home where Rusty and Sean have/had lived for many years, filling the place that was left vacant in October when Sean passed away. Although Rusty and Kolya are legally brothers, they really don’t know each other very well since Rusty had already moved there before Kolya arrived from Russia.

I know people are wondering why I have made the decision to place Kolya out of the family home when I am still highly capable of meeting his needs and doing his care. There never seems to be a right time for things like this, but it was time to make a move while I am still able to be involved with the transition. As with most families, adult children leave home and establish a career. It should be no different for my sons. However, the separation might be more difficult between a child with special challenges and the parent when a move takes place. With children like Kolya, parents spend numerous hours daily with their child to meet the child’s physical needs, do food preparation, provide maximum supervision, create in home social life if the child has difficulty creating friends outside the home. Many of our children have not spent nights away from home, like sleep overs with friends. One of my biggest fears has been communication between the care home staff and my nonverbal sons. This has totally stressed me out, not just with Kolya but with my other nonspeaking sons. To find openings in care homes has been an ongoing challenge for my sons who cannot live independently. Therefore, I decided to put my fears aside and take the opportunity when possible.

We started to prepare Kolya for this move when we visited in December and spent time with Rusty.

Family Photo - Marian, Rusty and Kolya

Marian, Rusty and Kolya

 The staff showed Kolya around the house and where his bed would be if he moved there. He seemed to like it.

Kolya's Bed

Later our friend Beth took him one evening to have dinner where she could show the staff how Kolya was accustomed to eating independently. I also sent the staff short videos of him eating, clearing his place at the table, getting himself a drink, selecting a PlayStation game or DVD and using his feet to open the cases and load and unload the disks himself. It is important to me that he continue to be as independent as possible as an adult. He has worked hard and has been creative in developing these skills. He deserves the right to be as independent as he can be.

I also asked for pictures of staff who would be helping him and the other residents so he could begin to learn their names. The administrator of the home went to visit his day program, which is the consistent in this whole transition. Everyone felt he was ready and all the paperwork was completed and submitted for the move.

Here’s Kolya the last night in bed before the move and the day of the move.

Day of move
Kolya Sleeping
Watching church

Kolya watching church

Goodbye

Goodbye for now

Traveling

On our way

Kolya arrives

Kolya arrives at his new home

Beth and Kolya photo

Beth and Kolya

Outside

Kolya outside his new home

New caregiver

Kolya and his new caregiver

Picture Frame

Setting up the digital picture frame

iPad

Kolya enjoying his iPad

Although I have cried myself to sleep and shed a few tears during the day, this move has also brought me moments of great pride knowing he will be able to adjust as time moves forward. I was told he has slept through the first two nights and that is more than I can say for myself. Kolya’s third day into the move, I was informed he advocated for himself that he did not want a shower everyday. This made me chuckle and brought some joy knowing he has matured enough to communicate as such and make decisions about his care.

Adis and Kolya image

Adis and Kolya

Another adjustment is the change in transportation from the care home to his day program. For the past several years, Kolya has ridden with the same driver and classmates. This driver and Kolya have formed a bond. He knew who to expect each day and would ask for her if for some reason she was delayed in the morning. Now, he may have different drivers with the way things are set up. I’m hoping things will become more consistent for him.

Although Kolya knew that we would be together soon for the Starry Starry Night Gala Celebration & Fundraiser for the Morgan Autism Center, he wanted to see me before then, and of course I wanted to see him too. We FaceTimed and agreed that I would take him out for lunch yesterday. When I got to the care home, he had our address up in Google Earth. Naturally he wanted to come home but I explained that would happen in May to come and spend a night. I’m sure we will have another outing before the May gala event, not just because Kolya needs to see Mom but Mom needs to be with Kolya too. 

Selfie - Kolya and Marian

Kolya and Marian

In case you aren’t aware, Kolya loves to create artwork that has been auctioned off at previous fundraising events for Morgan Autism Center. I have shared some of his work on my Facebook page, Marian Aiken – Special Needs Parent. Here are a couple previous paintings. However, we must wait to see what is being created for this coming May event.

Kolya Painting

Painting by Kolya

Finished work

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A Short Tribute to Sean

September 3, 1979 – October 24, 2022

I first learned of a 2 1/2-year-old child from Illinois during the summer of 1982 while at the North American Council on Adoptable Children (NACAC) conference. At these conferences there are binders and binders full of children who are eligible for adoption. Derek’s adoption had been finalized and I had the urge to add another child to our family – a child with physical challenges. It was at this conference I learned of Sean. As soon as I returned home, I met with my social worker and showed her Sean’s picture and the short description about him.

Sean

She agreed to call his worker in Illinois for more information. During that initial phone call, we were told that Sean was to be placed with a family the following week. We didn’t leave any contact information and I decided to look into another child I was interested in, Rusty. As many of you know, Rusty and then Ben joined Derek and me to expand our family.

Then at yet another NACAC conference in 1984, I was flipping through the binders and sort of wasting time when I came across a child in Illinois named Sean. I didn’t have his listing number with me but I was almost certain this was the same child I had inquired about and was told he would be placed with another family. When I arrived home, I immediately compared the listing numbers and they were the same. What was I to do? I already had Derek, Rusty, and Ben to care for. Yet, I couldn’t just leave this child without an adoptive family to provide him with a permanent home.

Once again, I shared with my social worker and we decided it wouldn’t hurt to at least make a phone call. We learned the first family had backed out at the last minute and since we hadn’t left contact information they had no way of contacting us. Arrangements were made to do a pre-adoptive visit in March of 1985. I loaded up our van with Derek, Rusty, Ben, and a friend Marsha to make the drive to Illinois. What a drive that was! There was a big storm with lots of rain and extremely strong wind. I found a place near a building to pull over the help prevent the wind from rocking the van. We waited until things calmed down and then went on our way.

We finally arrive at our hotel to spend the night. The next morning once everyone was up, dressed and had eaten breakfast, we loaded up and drove to the foster family’s home to meet Sean and his social worker. As with Derek, Rusty, and Ben, Sean liked to roll around on the floor. Instead of unloading all the wheelchairs, we simply carried the boys from the van to join Sean on the floor. After our visit was cut short because Derek struggled to breathe because of cigarette smoke, we returned to the hotel and with Sean in tow to spend the night with us.

Sean, Rusty, Ben and Derek

Sean, Rusty, Ben and Derek arrive at the hotel

I remember a lot of smiles, Ben cuddled in bed next to Sean. Rusty playing a game of pulling off Sean’s socks. Derek visually taking it all in with his approving smile. We just hung out in the hotel room, took our time eating whenever we wanted and whatever we wanted. Well, that sounds rather easy but it was more challenging than you think. Derek and Ben needed to have soft, ground foods and to be completely fed by others. Rusty and Sean could chew some and feed themselves finger foods but needed help with holding their cups for liquids or foods that required use of utensils. All the boys needed to be positioned in their wheelchairs, with their wheelchair trays on, and each helped in whatever way was needed. This should have been an eye opener of what to expect should Sean join the family. However, I don’t recall it ever crossed my mind at then how time consuming and how much work it would be to provide nutrition to these four boys on a daily basis.

The following morning after everyone was up, dressed and finished with breakfast, I left Derek, Rusty and Ben at the hotel with Marsha while I returned Sean to his foster home. After saying my good-byes to Sean and his foster family, I returned to the hotel to load up the van and we started our long return trip home to West Virginia. We talked about Sean as we traveled. Derek and Ben gave their approval of having him join the family if the social workers felt that would be in the best interest of Sean.

After we returned home. I pretty much left all the decision making in the hands of the social workers. After several phone calls, they felt Sean would do well in my family and completed all the necessary interstate paper work for Sean to move to West Virginia. I soon boarded a plane and flew Illinois to bring him home.

Sean and Derek

Sean and Derek hanging out after Sean arrives in WV

Since it was close to the end of the school year, we decided not to enroll Sean in the school program that Derek, Rusty, and Ben attended. Perhaps this would make for a better opportunity for Sean and me to form a bond. Once again I questioned the reason why a child who had been living in the same home from birth would be uprooted from the people he knew. Here are some of the reasons I was given: tension and disagreement between the foster parents, jealousy among the foster parents’ children because Sean required more attention because of his care, not able to get out in the community because family had no wheelchair van, little follow through with therapists recommendations, frequent respiratory infections (partly due to ongoing exposure to cigarette smoke), little encouragement to develop independent skills with feeding and toileting. At any rate, Sean joined us and seemed to be happy to be with Derek, Rusty, Ben, and myself.

Sean and Rusty

Sean and Rusty became close as brothers

Ben and Sean

Ben and Sean enjoying the fireworks

So, over the years, Sean learned to feed himself, use various communication devices, and drive a power wheelchair. He also endured several orthopedic surgeries. Of course, he had his favorite foods and loved to be around females. After his high school years, Sean was active in his adult day program. I might mention that Sean liked to move slowly and at his own pace. For example, one day we loaded all our sons into two vans to attend an event. Well, we thought we had loaded all of our sons into the vans but as we drove down the hill from the house, I wasn’t sure we actually had everyone. I tooted my horn at Jim who was ahead of me and asked if he had Sean in his van. Nope, he didn’t and he also didn’t have room to fit Sean’s wheelchair in. So, I turned around and went back to the house and there was Sean waiting outside the front door for his ride! After that experience, I made more of a point to make certain Sean was with the group.

As a young adult, Sean, along with Rusty, made the transition from our family home to an adult care home in San Jose. This separation seemed to be more difficult for me than for my sons. It was emotionally draining for me to let them go and think of others providing their care. However, Sean did well, continued to go on outings and even on week-long summer vacations with his house friends and caregivers.

Rusty and Sean

Rusty and Sean on vacation

Sean's Birthday

Celebrating birthdays continued at the care home

birthdays

Jose and Sean

Jose and Sean

Jose and Sean loved to hangout and lean on each other at their day program

Shades

Cool guy wearing his shades

After spending several weeks in the hospital in August, it was learned that Sean had untreatable bladder cancer. He would enter hospice care but could not return to his care home without special permission from the licensing agency. We did not want to transfer him to a skilled nursing facility. So, I invited Sean back to the family home and provided his care until the care home was able to have him return. It was a bittersweet time for me to have Sean here. We were able to reconnect seamlessly and our communication was still intact. After a little over two weeks, and before Sean left the living room, we had a short private moment when I could thank him for coming to spend time with me. Sean very much wanted to return to his ‘home’ and he ever so slowly, but under his own power, drove his wheelchair one last time down the ramp and out the front door of the family home.

Sean

Sean leaves the family home on September 14, 2022

Sean left us knowing he was loved. Once again, this separation was hard because I was aware it was final. However, the second time around, I knew Sean was the person ready to go and he helped make the decision.

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Ben, Another Try to Spread His Wings

I first met Ben during a summer cross-country trip in 1983.

He wasn’t a very big guy physically but appeared to have a big personality. He also gave me the impression of having untapped potential to develop intellectually.

Ben in Wheelchair

This was the first time I met Ben. He’s trying out Derek’s wheelchair. Ben did not have a wheelchair at that time.

A couple of weeks after I arrived home from my trip, Ben’s social worker and I began to communicate with the idea of Ben joining my family. However, he was to be filmed for a television program, Wednesday’s Child, to recruit families who might be interested in adopting Ben.

Luckily, we got things rolling before his television debut!

Ben’s worker felt my home was a good fit for him and liked the idea of Ben having brothers, Derek and Rusty, who shared many of the same challenges. A month or so later, I returned to Louisiana with Derek and Rusty in tow for a second visit.

After a couple of months of the necessary paperwork in order to place Ben in my home, Ben and I made the trip from Louisiana to West Virginia.  It was a snowy December day in 1983.

Leaving Louisiana

Ben and I ready to leave Louisiana and fly home to West Virginia.

Ben Adopted

Ben’s Page in adoption books stamped PLACED.

Ben became my third son. I remember how excited he was to see snow for the first time. Derek and Rusty were asleep when we arrived late that night but my friend Sue was still awake waiting for us. 

Ben had a rough start in life.

Many attempts made for his birth mother to bond and learn to care for him were unsuccessful. He then began a series of moves from one foster home to another to another as an infant. He finally ended up with the foster family who had contemplated adopting him but for whatever reason unknown to me they did not follow through with the adoption. 

Ben was very much loved in this home and was accustomed to being the center of attention. Reports said he had been spoiled terribly by the foster mother.  This resulted in giving him a temper.  He would try to strike out at others with his spastic arms and was stubborn. It didn’t take long for him to learn that in my home he had to share me with Derek and Rusty and find a more positive manner to get my attention other than his ‘basset hound pout’. 

Ben came with a list of labels: failure to thrive infant, severe athetoid cerebral palsy resulting from perinatal asphyxia, severe language disorder, severe mental retardation to one report of having average to possibly above average intelligence, and microcephaly.

Ben could do little other than to nod his head for ‘yes’ and move his eyes slightly to the left to indicate ‘no’ when asked questions.

To me, he appeared to be bright and he loved to have stories read to him. He was extremely attentive during storytime and when others were conversing in his presence. He seemed to be absorbing all the language and experiences taking place around him. I couldn’t wait to find a way for Ben to be able to express his wants and needs. (You can learn more about this by turning to posts on Ben’s communication development.)

Several years back, Ben moved into a group home for young adults. He felt he was ready to become more independent, and I feel he was, but after a relatively short time, we learned the caregivers were not able to meet his physical needs and he moved back home.

It took a couple of years for him to once again regain his desire to move out. We have been searching for about five years for another place to live, there was an opening at an intermediate care facility in San Jose. The care home is not exactly what he had hoped to find and after much thought, Ben decided to give it a try. 

On Friday morning after living 37 years minus a couple of months under my care, he said good-bye to his large, private bedroom with walls decorated to his liking in exchange for a much smaller room to be shared with another resident.

Saying goodbye to his room . . . 

BensRoom2
BensRoom3
BensRoom1
Ben's last night at home

Ben’s last night at home

The couple who own the home are 20 years younger than me and have other staff to assist. Those facts certainly should help with his physical care.

Heading Out

Ben heading out the door to his new place of residence.

I am wishing the best for Ben. 

Ben arriving at his new residence.

Stay tuned for more about Ben now that I have gotten started!

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Daily Life and Housing: Experiences My Sons Face as Adults

I have sons living in almost every situation possible today. I would like to share my personal assessment and observations based on my experiences with my sons.

There are so many pluses for adults with special challenges to continue to live in the family home where they know the setting and home environment. Many houses have already been adapted to meet their unique needs. Some may feel more secure with parents and other family members nearby and have consistent moral role models and foods they are familiar with. Adults with special challenges tend to keep their individuality and don’t need to conform to some restrictions as those who live in care/group homes might, such as being able to watch their own TV preferences, keep their own hairstyle, and wear clothes that fit their personality. Financial stability can be an advantage depending on how the family manages their financial matters with charging rent for a room or share of costs for housing. Most often, this tends to be lower than paying for rent for an individual apartment.

However, there are several negatives of continuing to live in the family home. Probably the most common is parental burnout. For some parents, the lack of freedom to come and go when desired can be a huge downfall. I have found this to be an inconvenience at times but have come to terms with it as part of reality with my family. I have tried for years to find reliable and competent hired help only to be faced continuously with little hope it will ever happen (see Hiring Help, April 22, 2017). When I have sporadically hired someone, I have felt guilty when I asked for assistance for someone to come into my home. Being the extremely conservative person that I am, dealing with others who can be wasteful stresses me out. So, why should I feel my privacy has been invaded and hard earned dollars have been sacrificed for a few hours so I can go here or there? 

Photo: Ready to take off on our road trip

Beth, Kolya, and Marian – Ready to take off on our road trip

As I write this reflection, I am in the midst of a one-month cross-country journey. Although I have travelled over the past 42 years since I began my life as a mom/caregiver, only 9-11 days of traveling was alone without needing to care for someone. This trip I have been trying to plan for a year and a half but many obstacles came up with finding a place for Ben or someone to do his care. At the last minute we hired nursing care for him while I am gone. The cost is going to be huge but it will be taken care of from my estate plan. Yes, I have Kolya with me but he does not require lifting, or ground/pureed foods, and I do not need to stand and feed him. It is a whole different level of care. Our friend Beth has joined us and we are off to a wonderful start. I am mentioning this to illustrate how restrictive being a fulltime parent/caregiver can be and not to blame a person like Ben or Kyle, or any of my other sons for ‘grounding’ me to home. It is what it is. Sergei and a friend are helping Kyle while I am traveling. Also John is able to help some with Ben when he arrives home in the afternoon. What a blessing to have these three to help out. 

I can think of a couple more negatives I have experienced while caring for my adult sons in the family home. It is difficult to separate the desire to be a parent from the responsibility of being the caregiver. By this I mean, I want to be the parent and see them as my sons – dressing in a way I feel is appropriate; but they feel I am too controlling and limit their self-expression. Or making sure they are properly positioned in their wheelchairs after years of therapy and/or surgeries when they really would just rather slouch and take a break. Or my high expectations as a parent are against what they feel is an okay level of performance for them as adults. Sometimes they become bored and/or even isolated because parents become tired of going places. (This tends to be me but I know several parents close to my age that continue to be out and about. However, many have hired caregivers to help them out.)

I have several sons who have lived in care/group homes for several years. I have written about this in other reflections but will share a few thoughts here. You would think there would be less burnout of caregivers because of change of staff, more outings can be planned because of the number of staff per client ratio, and having more people in the home provides more opportunities for social interaction. Sadly, this is not always the case. Some homes have frequent turnover of staff or outings are limited because of lack of transportation. Usually in these homes that house six adults, there may be less privacy because of shared sleeping areas. Most of my sons entered the care homes with individual hairstyles of their choice and some with facial hair. However, now they all have shaved heads and no facial hair. That has not been their choice. One of the most annoying changes for me is that several left my home wearing underwear and took responsibility in asking to use the bathroom. I hate to say this, but they no longer use underwear but use adult briefs. 

For these sons living in group/care homes, their financial needs are fairly well met since the Regional Centers help fund the housing and caregiver part and their SSI goes toward the cost as well. Each is allotted a specific amount of spending money a month to use for clothing, recreation and the like. However, in our area there is a great shortage of homes to assist those in need. 

I also have several sons who live in their own apartments using Supported Living Agencies to help meet their physical care needs. Most of them struggle financially to cover the cost of rent, unless they have Section 8 housing for low-income people. One of my sons who does not have Section 8 housing cannot even afford to have cable or Internet because all of his SSI is used on rent, utilities and food. Life can become extremely boring when you are sitting in a wheelchair all day.

Ideally, Supported Living is supposed to allow for more flexibility of daily life and personal decision making – getting up and going to bed when desired, coming and going to various activities, planning meals, and scheduling appointments to fit their own schedule. For one son this is true but for another son who has live-in caregivers it is not what happens. The caregivers have taken control over his life and schedule to fit what THEY want to do and not what he needs to do. In fact, they will not even give him a key to his own apartment (the apartment is leased to him). I am not sure how often this happens but hopefully not frequently. Another drawback is the large turnover of caregivers. Even with some of these ongoing negative issues, these sons prefer to have a place with their own bedroom rather than moving into a group/care home.

I still have sons who fall through the cracks of social services because of the form of physical challenges they have: those with congenital limb amputees, arm and hand deformities, dwarfism, and/or other strictly physical disabilities that have no emotional, development delays or autism. These sons receive no services from the Regional Center, no additional funding for housing, and no social workers to assist with finding housing or caregivers. Although several are working part-time, and some even fulltime jobs, their income is not enough to cover housing in this area. We are stumped for solving many of these problems because they do need to have housing that is wheelchair accessible or have other physical modifications to the living structure so they can be as independent as possible. 

One son who has had Section 8 housing and who has rented a house for years to share with a friend was blindsided recently when the landlord passed away. The family wants to sell the property but where can he find a place that will even accept Section 8 housing vouchers on top of being accessible to meet his physical challenges? He is one who falls through the cracks because he does not qualify as a Regional Center client and has no support from social services. As of the time I write this, he is searching on his own to find a place and working with the family of the landlord to allow him to stay in the house until he can find another place and not be pushed out on the street. Thankfully the family has agreed with the plan.

Would you like to share your experience with others about housing and caring for adult children who have extra challenges? I would love to hear from you.

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A Place for Alan

Alan and Donald returned home as a ‘temporary placement’ from a wonderful care home where they had lived for many years. Temporary for Donald meant a bit shorter time than it did for Alan. Finally, after 8 years of ‘temporarily’ living with the family, an opening was available and we decided to take the opportunity for Alan to move into a care home. The best part, it is the same home where Donald lives and they are together again and even share a large bedroom. 

Photo - Alan and his brother Donald in the living room of his new residence

Alan and his brother Donald in the living room of his new residence

Alan and I have struggled together over the years. He had strongly bonded with his dad when I came into the picture. Therefore, for many years I sat along the sidelines while his dad was the primary caregiver. Things changed. His dad and I separated and Alan began to spend weekdays with me and weekends with his dad. Finally, Alan and I had the opportunity to actually get to know each other better and form a stronger bond. Parenting expectations and caregiver styles were different between his dad and me. There was a good deal of adjustment for Alan to make but he is bright and was capable of doing so. After living in a group home for several years, Alan moved back home with me fulltime but still with the goal of finding another place to live. One day an email came in from his social worker informing me of an opening in a care home and asking if I would consider Alan moving there. The strange thing is that Alan knew about this before I had any information and he seemed ready to go.

Photo - Alan’s last morning at home before moving to his new residence

Alan’s last morning at home before moving to his new residence

Photo - Alan loading into the bus - happy to be moving on

Alan loading into the bus – happy to be moving on

We didn’t have a whole lot of time to prepare for this move to claim the opening at the care home. Alan is not a person you can just say to someone – “Here he is. Good luck.” Wipe your hands off and leave. There is a great deal to explain about his care since his needs are close to the maximum of what most individuals with severe physical challenges require. I spent a lot of time recording things – how to prepare his food, how to lift, how to put him in his wheelchair, how to feed him solids and give him liquids, how to give him his medications, and the list goes on. I printed this out and passed it along to his new caregivers. Some staff from the care home came to the house where I could actually demonstrate all of the above. Someone videoed it on their phone to share with other staff who were not able to come here for this beginning training session. When moving day came, I have to admit I was feeling nervous but also excited for Alan.

Things seemed to be going well from information I had received from staff but all too soon another email came in saying he had been taken to the emergency room and admitted to the hospital. WHAT? How could that be? The first thing I wanted to do was drive there and see what was going on but I was tied up at the house with other sons and I also wanted to avoid going to medical facilities and being exposed to the flu during this bad flu season. So, emails and text messages began to go back and forth between the care home staff and myself and I managed to avoid stepping into the hospital and the primary care physician’s appointment. 

I felt as if I had let Alan down and was upset with the staff for these problems. How could all of this happen since the last 30+ years of Alan’s life the only time he had been hospitalized was for orthopedic surgery, if I remembered correctly?  At any rate, he healed, was discharged, and went back to the care home and his day program.

Too soon another email came that he had once again been taken to the emergency room and admitted to another hospital for a different problem. Twice in less than four months after moving out. My heart sank and I felt so helpless for a while. However, I did not avoid the hospital this time but went to check on him, to speak with medical staff, and advocate for his needs. I also alerted the medical team Alan’s desires for his care that were written in his Advance Health Care Directive.  I asked the care home to bring his wheelchair into the hospital so I could get him off the bed and show them the proper positioning to feed Alan. Things improved quickly and he was discharged back to the care home.

Alan wanted to come back to the house. I understood his fears but I also encouraged him to give it another try. I had the opportunity to speak with the owner of the care home with Alan present. I felt better after our discussion and hopefully changes can be made to make the situation better for everyone. I learned there were some significant changes made in Alan’s diet, many foods that Alan requested but not foods he frequently consumed when living with his family, could have caused some of the problems of the first hospitalization. The issues concerning the second hospitalization are still not clear but appear to be related to how Alan is being fed.  Someone will need to go to the day program and review feeding techniques with the staff. 

As a parent, I sometimes forget that things I do naturally and in a routine way are not something others would do. I shouldn’t expect others to step in and do things the way I would do. I can give suggestions on how to position someone on his bed, for example, but not to expect there will be follow through in the exact same way I do. Most of how I care for my sons developed through trial and error until a solution was found that was the best for each of us. This is not something that happens overnight and honestly I completely had forgotten how long it takes to learn about each individual. 

On top of this, I learned that Alan cried every time my name was mentioned (I was not aware of this) and was stressed. This could have contributed to the medical emergencies. There was another big change about this same time and that was beginning a new day program. Although things were reviewed with some staff, perhaps it was too much information to process at one time, or different staff members are assigned to assist Alan daily. 

As I write this, there have not been any more medical emergencies and I pray there will not be more. 

Photo - Alan waiting for his ride to the day program

Alan waiting for his ride to the day program

 

Photo - After the day program Alan is dropped off at his new residence

After the day program Alan is dropped off at his new residence

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Respect and Dignity

Trying to provide, understand and accept varying degrees of respect and dignity for my sons has been a struggle for many years. Recently this concept has become more challenging for me.  Am I old school? Burnt out? Has my expectations of others changed over the years? Whatever the reason, I am having a difficult time.

Let me explain a bit about what is happening. As you all know budgets and support systems for those living with physical challenges has become extremely limited. I spent more than a year and a half advocating for two of my sons. I made phone calls, wrote emails, filed appeals, and even went before a judge to request appropriate quality (not cheap, flimsy) wheelchairs. Chairs with specialized seating systems, with specific foams, upholstery, and supports to meet their personal needs. I am happy to say the judge sided with us and both of my sons were able to get their new seating systems. One of them received a much needed new wheelchair from a vendor with years of service and knowledge with seating systems.

I am sure I have mentioned before that because of the severity of the physical challenges my sons have they can’t sit in something plain and simple. Seats need to be of specific measurements and designs to accommodate their unique bodies and allow them to sit upright as much as possible with special trunk supports, headrests, and seat depth (especially when one leg is longer than the other or hips are out of socket).  Many hours and trips back and forth to the supplier happen before the chair can leave the vendor and be taken home to be used. These manual wheelchairs are not cheap and the price tag can easily be $15,000 give or take a couple thousand dollars and even another $10,000 more if the user needs a power wheelchair. 

Photo - Vomit on wheelchair

Vomit on wheelchair

After all my advocating and feeling successful, this week I about lost it when one of my sons came home from his program with what appeared to be vomit on one side of his new chair. It wasn’t even his vomit but that of another client’s. It appeared that no staff had made any effort to clean up this mess.  Instead of taking this son for a blood draw that was scheduled, I spent the time cleaning the chair where the mess was into the seat, seatbelt, tilt track, front axle, tires, and armrest. I was shocked that the paratransit company would even transport him home from the program with this mess. May I ask, what has happened to respect and the need to take care of specialized equipment? 

About one month after the new chair arrived, I had to remove the foam back section to clean up food that was behind it and down into the back of the chair seat. This food was not the type of food I had fed my son at home. So, once again, why don’t people show some respect and clean up the messes that they have made? 

Another area that has been eating at me is the way some of my sons arrive home and I find the poor quality of care they have received in the bathroom. One son had been coming home with the waistband of his underwear rolled and bunched under his tailbone and not pulled up correctly. How uncomfortable! He has become passive and doesn’t mention this to staff. When discussing this with him and sharing my thoughts that this is not acceptable care, my son stares at me blankly as if I am speaking a foreign language. Previously he would have asked staff to correct the problem. Has he lost respect for himself to not even say something? I am bothered that he must be uncomfortable because of careless caregivers.

Another son who uses diapers arrives home with some really unbelievable stories – diapers sticking outside of his pants for all to see, penis not even in the diaper (guess where all the urine goes). Diapers on inside out, or the other day with the back waist below his tailbone and the elastic leg opening up his crack. Insane!

Another area that annoys me to the point of anger is those large sick-looking pinkish chux sticking out everywhere on the seat of the wheelchairs. I understand it is wise to use them to help protect the upholstery but why can’t they be folded neatly and still give protection to the chair from toileting accidents? I would also like to suggest that caregivers place soiled garments in plastic bags in the physically-challenged person’s backpack and not tied on the handles of the wheelchairs for all to see. Another thing is to place urinals in the backpacks and not sticking up in full view. In my opinion this is equivalent to a person like myself walking around with a toilet on my back to show I use a toilet to eliminate human waste. I could go on and on with stories about this topic and I am sure some of my readers have some terrific stories to share as well. 

I have always taken great care when dressing my physically-challenged sons to make sure their undergarments were on correctly, comfortably, and not showing for the world to view. I have always wanted my sons to be accepted in public. For some, their appearance from the severity of their physical disability makes it a greater challenge to be accepted even without being dressed in a disheveled manner. I have some sons who chose to dress in ways I don’t care for and that is their choice. However, for those who cannot make these decisions or help themselves with their care, it is my responsibility and the responsibility of other caregivers to be sure they are dressed comfortably and appropriately. For me, I would rather take a few more minutes to dress my sons appropriately, to take care of their wheelchairs and help them look presentable in public. It drains me emotionally to see so little regard given by others in this area of care and I pray that one day when I am feeble and need assistance, those who assist me will allow me to keep my dignity when I am in public and not advertise to everyone that I am now in diapers.

Photo - Soiled garments on back of chair

Soiled garments on back of chair

Photo - Urinal for all to see

Urinal for all to see

      

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Conservatorship

When some of my sons turned eighteen years old, I applied for conservatorship for them. All of them were still living at home and for various reasons were, and still are, unable to make some decisions on their own. I met with a lawyer to help with the paperwork and was investigated by the court before being appointed with limited conservatorship for my sons. The court does periodic reviews to make certain their needs are being met or whether changes need to be made.

Today I continue to be responsible to make certain these sons have appropriate living conditions, adult programs to attend, recreational and leisure activities, financial stability, and medical care. As conservator, I normally attend their annual meetings with the regional center social worker, day program, and group home staff. During these meetings, goals are reviewed, concerns are made known, decisions are made about their medical care and treatment, and end of life concerns are discussed.

Often I am contacted to sign forms for medical treatments, and so it was this week when I received an email requesting I sign forms and send a copy of my Letter of Conservatorship for one specific son. He was scheduled to have in-hospital dental care that required permission from me as his conservator for the treatment plan. I had no problem acknowledging he needed the dental work done in a hospital setting, but, this being a last minute request, I became paranoid about the time constraint. I had previously scheduled appointments for my sons still living at home. I managed to sign papers, copy other information needed and find a place to fax the papers in time so the dental treatment could be done on schedule.

Other times, I have been awakened during the night to be informed one of my sons has been taken to the emergency room. Then, I get another message I need to give verbal approval for whatever treatment is being considered. I’ve called doctors through the relay phone system using my TTY to give verbal consent. It’s a time-consuming process because there needs to be a second person from the medical staff on the line to witness the phone call. If at all possible, I go directly to whichever hospital my son has been admitted to and sign the papers in person. Since most of them live in a community I am not all that familiar with, I tend to get lost or not take the most direct route. A couple times we’ve had some scary medical events, but the guys fight off the infections or whatever and return to their group homes.

Recently, I have been considering the need to end my conservatorship duties for most of these sons, especially those who no longer live at home. Three have lived in care homes located locally for several years. Their needs continue to be met by others (although maybe not as I would do), but they have thrived where they are living. There are a few things I need to finalize before ending my responsibilities as conservator and I’d like to do this while I am still in a fairly good state of mind.

Once again I am working with a lawyer to find the best, legal way to go about terminating conservatorship. Because I am a limited conservator there are special rules for ending limited conservatorships:

 *The limited conservator dies, (not my plan yet), or

*The limited conservatee dies, (not my plan either), or

*A general conservator is appointed, or

*A judge ends the limited conservatorship

I am not considering asking any of the more capable siblings to take over for me. I am looking into a specific agency that handles special needs trusts and conservatorships. However, my sons do not have trust funds and financially can’t afford to pay for such services. I do like what I have learned about this one agency. Of course, there are government agencies that provide a “public guardian.” However, the public guardian may have so many cases that it’s hard for them to give the conservatees the attention they may require or get to know them personally. This personal attention is necessary to help a conservator make the best decisions about the conservatee.

In California, people with developmental disabilities have rights to services they need. State services are provided by regional centers that are nonprofit corporations with contracts with the California Department of Developmental Services to serve people in specific geographical areas. If an adult with developmental disabilities does not have a conservator, the regional center will be assigned to make decisions for the developmentally-disabled adult. This is how it is for one of my sons. He seems to be doing well, but, sadly, I have never met his service coordinator. I understand the regional center workers have heavy caseloads, but I may need to consider this option for several of my sons.

I feel I have done a fair job of being conservator for my sons. At times, I think there might be better pull to have some services provided for my sons if they were under an agency that focuses primarily on conservatorships, especially in locating care homes to take over what I do today. I’m definitely in need of cutting back my workload as I age, but I certainly don’t plan to do that by dying, which would comply with one of the criteria listed for limited conservatorships. 

What do other people do in this situation? Are you a conservator for an adult with a disability? Please share your thoughts and experiences here with us to help us all navigate this new territory.

Here’s a look at the paperwork that is filed for conservertorships.

Photo: request for appointment for court hearing date

request for appointment for court hearing date

Photo: report by the court investigator is filed

report by the court investigator is filed

Photo: day of the court hearing, this is filed with the Clerk of the Court but is not affective until the letter is filed

day of the court hearing, this is filed with the Clerk of the Court but is not affective until the letter is filed

Photo: Letter of conservator filed with Clerk of the Court naming Good Shepherd Fund at conservator

Letter of conservator filed with Clerk of the Court naming Good Shepherd Fund at conservator

 

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Rusty

Photo_RustyBeforeSick

Rusty before he became sick

Parenting may be one of the most emotional experiences in life. At least it has been in my life and this week found me focused on Rusty. I have written elsewhere (Chapter 12 in my book DEREK) about Rusty’s medical struggles shortly after he came into my life. Regardless of his medical challenges, behavioral issues, and extremely low intellectual level, Rusty and I bonded. He has always held a special place in my heart.

There have been some hospitalizations over the past several years and this week another medical challenge came to the front – Rusty was taken to the hospital with pneumonia. He was not able to or had no desire to take nutrition by mouth. My first reaction was to jump in the car and head to the hospital as flashbacks of previous life-threatening allergies to medications came to mind.

Several years ago I had decided to place Rusty in a care home, partly with the hope to save my marriage and also to allow me more time to care for my younger and more medically-fragile sons. The placement did not save the marriage but did give me more time for my other sons and the house calmed a bit without his constant banging and screeching behaviors. However, I felt deeply guilty making this decision. Even though he was a young adult at the time of placement, many of my sons still at home were older than he. Yet, I made the decision to move Rusty. I felt like such a failure not to continue with his care because years earlier I had determined he was ‘here to stay.’ Although social workers and doctors had predicted we would only be able to manage five years, Rusty did stay for more than fifteen.

The care home where Rusty, and also Sean, reside is home to six adult men with various degrees of challenges. The house is kept neat and two residents share each bedroom. The rooms are much smaller than our home and the bathroom is not nearly as accessible as ours but they make it work. The men are showered more often than here at our house because of the number of staff available to provide care for the residents. I used to joke that if they kept Rusty so clean he wouldn’t know who he was. Regardless of how often I bathed him, he was always dirty from spending hours on the floor moving around and playing. In fact, I was greatly upset because the pleasure of being mobile as such would pretty much end once he moved to the care home with different rules and conditions to meet licensing requirements. Also, all the clients have very short hair, unlike our household where each has his own hairstyle, beard and/or mustache to express their individual personality.

Even after all these years I find it difficult and emotionally upsetting to not visit my sons more often. To mention a few reasons why: communication difficulties, different methods of care, cultural differences, and my own desire to be an ongoing mom and caregiver when I need to let go. I really have a hard time understanding the speech of most staff members in the three different care homes where five of my sons live. I become frustrated and then tend to shut down mentally. I am sure this gives the staff a strange impression of who I really am.

I also have my set ways of caring for my sons and it has been difficult to watch others take over and do many things in different ways (not that what and how they are doing it is wrong) and I try to hold my tongue and not become upset. After all, these are my sons who I have taken care of for so many years. I love them and feel I know them best ~ isn’t this true of most parents? I know what TV programs they like to watch, foods they especially like, music they like to listen to, and the list could go on. At any rate, Rusty was not physically under my care the week he was taken to the hospital. The care home staff immediately notified me and my heart skipped a beat or two as I read the text message.

PhotoSentToMarianFromHospital

Photo of Rusty sent to Marian from the hospital

No one really knows what happened. However, when a staff member noticed that he was unresponsive for a few seconds, there was concern. Perhaps he had a seizure? He soon became aware of his surroundings but he was pale and extremely weak and was immediately taken to a hospital.

I found time to go check on Rusty over the weekend. The doctor on call came to speak with me but it was close to impossible for me to understand her speech. Of course there was no ASL interpreter at this specific hospital but I got the idea of what was being recommended for his care. The hardest thing was to get them to understand that I am his conservator even though I had papers with me. I also had his Advance Health Care Directive, but the doctor wasn’t interested in that. I was frustrated and told her I would be back on Monday to follow up with everyone then.

Monday found me back at the hospital struggling to understand what was being said, especially by the two nurses who refused to remove their facemasks for me to speechread. (I need to order some of these new masks that are partially clear to allow me to see people’s mouths and pass them out if needed). They supposedly tried to find an ASL interpreter but couldn’t. Several people were in the room at the same time or in and out: care home staff, one or two nurses from the hospital, his doctor, a new worker from Good Shepherd Fund, a nurse from San Andreas Regional Center, and a speech therapist making suggestions about what should be done, how things should be done, and what changes need to be made. Too much!

Photo_RustyInHospitalStaringBlankly

Rusty staring blankly into space

During all of this, Rusty was pretty much just staring around with no facial expression, pulling off his nasal cannula and not happy with his IV. At times he appeared to be cramped and wanting to change position but really couldn’t move much because his right arm was restrained to keep him from pulling out the IV. The care home staff and I helped him scoot up in the bed a bit but no hospital staff made an effort to move him the entire time I was there, which was most of the day. The Regional Center nurse and I had a serious conversation. Between the two of us we completed a POLST form for the doctor to sign. All the time as I was speaking with people, these thoughts kept going through my mind: ‘Give me wisdom, give me courage for the facing of this time as I make decisions on Rusty’s behalf.’ I placed a kiss on his forehead, as I needed to leave and go home to care for some of my other sons.

After all my frustration of communicating with the medical staff I was relieved they finally listened to what I had asked – finish the antibiotic via IV and remove the IV. He was discharged to the care home the following afternoon and I am so thankful the care home  would even consider taking him back (although I was mentally making a decision to bring him with me if needed). I suggested that the care home slowly begin feeding him orally but modify the diet and make the food soft to start with, give him foods he especially likes to begin, regardless of their nutritional value. My goal was simply to have him begin eating again. I guess I should mention that the day Rusty was taken to the hospital he was eating regular foods, chewing, feeding himself, and this is the reason I stuck with the decisions I had made.

The next day I was asked to go to the care home to sign some papers for a home health nurse. She arrived 45 minutes late and I was feeling antsy. This nurse had never met Rusty or me. The first thing she stated in the conversation was that Rusty needed a feeding tube. I mean, how do people draw these conclusions before ever meeting the patient or family? I struggled to remain polite as I said it was not my intention for Rusty to have a feeding tube. I made a few suggestions to a care home staff as I watched him feed Rusty soft foods and it was also obvious that the headrest on his wheelchair needed to be adjusted to allow him better positioning for swallowing. A couple days after he returned to the care home, Rusty was eating solid foods cut in small bites to make it easier for chewing and swallowing.

Have I left some of my readers with questions about why I struggle with my feelings about placing Rusty in a care home? Let me explain a bit and know that I am grateful he has a place to live and people to care for him. Rusty and I have been through so many life-threatening medical problems that it is hard for me to trust what others will do. Most likely if I had not been involved with the decisions this past week he would have had a feeding tube when he left the hospital. Can you imagine how I would feel if permission was given for surgery last week to have a feeding tube knowing that he is now eating again? That would have left me broken-hearted and he would have been deprived of one thing he enjoys, eating.

Another reason I struggle with out-of-home placement is his inability to communicate at a level my other sons can. All those who are in care homes can at least make their needs known to others at a much higher level than Rusty. They all have developed consistent YES/NO responses and can use icons or modified signs or speech to communicate. Rusty is at an entirely different level and I become upset thinking someone will not be able to read his body language to understand him or to meet his needs. I struggle emotionally on his birthday. I can send a card but really he would not have any idea who it was from even if care home staff mentioned it was from me. My other sons can understand that level of communication. I need to come to terms with these feelings. I’ve been dwelling on them long enough.

I understand the outcome of medical challenges may not always be like this past week. However, my thoughts of ‘Give me wisdom, give me courage for the facing of this time as I make decisions on Rusty’s behalf’ were answered.

 

Follow-up: Two weeks after his discharge from the hospital Rusty and Sean’s care home took a trip to Lake Tahoe.

 

Photo_RustyAtLakeTahoe

Rusty at Lake Tahoe

Photo_RustyAndSeanAtLakeTahoe

Rusty and Sean enjoying the day at Lake Tahoe

 

 

 

 

 

 

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