How Alone Are We Really?

 

Taking care of Robert involved a huge team. Richard and I were primarily his caregiving team for more than a decade but Robert had other caregivers, doctors, specialists, day program staff, physical therapists and, eventually, skilled nursing facility staff, involved in his care. This doesn’t even take into account the ER doctors and nurses, the pharmacy staff and the companies that provided his medical equipment or the one who supplied his briefs. 

Oh shoot, and I almost forgot about the transportation companies, their drivers and the other riders on the  van through the years! There was also the Regional Center and the many service coordinators Robert had. There was the social worker from IHSS who visited annually (not always the same person but some years we got lucky and had a familiar face). 

Because I shared Robert’s story online and was active in epilepsy awareness and caregiving groups there were many more people who cared for Robert.

Robert’s care and social circle was huge and this does not even include our family! 

Oddly enough, it often felt like Richard and I were on our own caring for Robert. After all, we were the ones changing his soaking wet briefs in the morning and doing several loads of laundry a day. We were the ones logging his seizures, behavior and vital signs to keep an eye on any sort of seizure cluster coming or hint of illness (of which there were many). I was the one to sort his meds for the week and make sure we didn’t run out. 

We had a huge team and took advantage of many resources available to Robert but we still felt alone. 

I suspect this is similar to what other caregivers feel because we are the ones ultimately responsible for our loved one’s care. 

I quite literally felt responsible for keeping Robert alive. 

As parents we feel that way with our babies and toddlers but, if we are lucky, they grow up to be independent, thriving adults. 

As caregivers, there is a reverse trajectory for our loved ones. They decline. Their ability to manage their money, decisions and household declines. Their illness gets worse. Their mobility often worsens and many times they lose the ability to physically take care of themselves. 

And there is no timeline for how long this goes on. Not only that but we don’t always know just how far the decline will go. Sure, we can look up statistics of the disease but that does not give us a definite timeline. Heck, I had a doctor tell me Robert probably had three more years to live – tops. He lived 11 more years and died of something no one saw coming!

We do the best we can to keep our loved ones alive. They depend on us and we don’t just watch for the next pneumonia but we help them thrive. 

We add to our caregiving team. We set up social services. We get to know the doctors and specialists and physical therapists. We add in home services or eventually place our loved one in a facility. 

Robert’s whole team worked to not only keep him alive as long as possible but as happy as possible. We all had the same goal: keeping Robert (as he would say) “super, amazing, excellent and great!” 

Robert wanted to spread epilepsy awareness so we signed him up for various studies (one saved his life years ago when he was testing out new equipment for patients in septic shock). He was very social so we kept him in his day program even when he moved to a skilled nursing facility. 

The staff at the skilled facility recognized Robert’s love of people and games so made sure he participated in group activities instead of keeping him in his room. He depended on people to transfer him from the bed to the wheelchair so this took extra effort which we greatly appreciated. Our beloved special caregiver for Robert, Pattae, made sure Robert was entertained and kept us informed of his health when we couldn’t be at the facility. 

It was so difficult to lose Robert. I still miss bringing him home to get his hair cut or to give him a special treat (usually involving a chocolate Frappuccino or burger and fries). Richard misses playing bingo with him every Friday afternoon. I miss watching Family Feud or Wheel of Fortune with him. I miss watching him toss a toy to Taz down the hallway in our house. 

I also terribly miss Robert’s team we created. I miss talking to his terrific doctors and nurses. I miss Pattae but thankfully we have stayed in touch. I am always on the lookout for caregiving jobs for her and refer her to anyone I know! I miss his day program staff and the friends Robert had there. I keep in touch with his service coordinator from the day program so that definitely helps.  I miss his physical therapy team and will never forget how good they were with Robert. 

It was so difficult to lose Robert but it was also difficult to lose everyone involved in his care over the years. I am grateful we had the awesome team that we did and am positive everyone played a part in keeping Robert around (and happy) much longer than anyone ever thought possible. 

As a caregiver, you may feel alone sometimes (or often) but it helps to create an extended support system and sign up for all the services your loved one qualifies for. Write down all the services and support you currently have and those on your wish list. Add to it as you think of those involved in your loved one’s care or the services you would like to have.  

You may not see it at the time but each of those people involved in the support system and services will contribute in some way to your peace of mind and your loved one’s health and wellbeing. Yes, you are the one doing the laundry and meds and keeping your loved one clean, dry and as healthy as possible but you don’t have to always feel alone. 

Holding a Care Facility Accountable

It’s a fine line between advocacy and being known as That Woman or Pain in the Rear (or worse). It’s not that I care what I’m known as (frankly, I’d rather these care facilities be on their best behavior because they think I might just cause some trouble for them). What I don’t want is Robert to suffer the consequences of my being pushy so I pick and choose my battles.

Robert’s ISP meeting was held last Thursday. That’s “Individualized Service Plan” for those who don’t yet speak Care Home Code (don’t worry if you don’t – I’m still getting used to these acronyms).

The night before the ISP, I hunkered over the first ISP and reviewed my notes from the months after Robert’s move-in. Reading of the struggles when Robert first moved into New Home was depressing but I wanted to focus on what objectives were set out for Robert at that time and how he seemed to be accomplishing them. I also made a list of issues to discuss with New Home so they can do a better job and be held accountable (the Regional Center and his Recreational Therapist were involved in this meeting so there were witnesses!). I’d love to bring up all the problems I want solved but decided to focus on what can be fixed now.

The House Manager was not invited to the meeting which I found odd. Nurse Ratchet was not at the meeting which I found to be a relief. The person who is probably the least hands on with the clients (we’ll call her Ms. Z.) was at the meeting and her lack of knowledge about what actually goes on at the home became evident very quickly.

Her priority is not the “consumer” but the paperwork she has to complete and send in to her boss.

Robert’s morning routine. Robert dawdles. He’s on the OCD side. He takes 2.5 hours to get ready in the morning (grooming, dressing, eating, grooming again). He’s missed the bus a few times but the House Manager worked with me to create a system that works for Robert and he hasn’t been late since.

Ms. Z. insisted this was still a problem and suggested a visual chart for Robert so he could see all of his morning activities and when he’s supposed to do them. Did she just take some sort of continuing education class that presented this as the Greatest Idea Ever? A chart Robert has to spend time looking at and deciphering is only going to delay him further. I explained that House Manager came up with a good solution and that is working. The problem is fixed!

She wasn’t satisfied. She wanted to write down a plan (other than the one I told her about, apparently). Someone suggested Robert shave when he showers at night. This will disrupt his Jeopardy and Wheel of Fortune watching, I said, but then it was suggested we get him DVDs of those shows so he won’t miss them.

Ms. Z. sat with her pencil ready to write down this complicated, expensive and unnecessary plan. I reiterated this is no longer a problem to solve but if they really want to try something else, then that would be fine. I only agreed because (1) the television doesn’t work right now so Robert can’t watch his shows anyway and (2) the other plan will actually still be in effect and this new process will not interfere with it.

Objectives for Robert; Objectives for New Home

Robert has his second ISP meeting today at New Home. This is where everyone involved in his care (nurse, house manager, supervisor of house manager, speech therapist, regional center rep and me) decide on his “objectives” for the next three months. The last one was just after he moved in to New Home last February (which I realize was more than three months ago but, after the first meeting they wait for the client’s birthday month to have the next one.).

The objectives from the February meeting and the results so far:

1. Behavior modification regarding changing his dirty clothes and putting clothes in the hamper to be washed. Robert is doing much better with this although he still insists his jeans are clean when they are not. I make sure I set out a new pair of jeans when he’s at our house or when I visit him through the week. I’m not convinced New Home does this (even though they’ve been asked).

2. He is slightly over the ideal weight so they will watch his diet and create an exercise program with staff. Robert lost some weight just from eating different food than his last place (yes, that meant new jeans for him again). Exercise program? Hmm . . . I haven’t seen any evidence of this other than when I take him shopping for new jeans (you would think I would have every possible size by now)!

3. Learn his new address and phone number. Robert did learn his address! I was very excited to hear him recite his address during a recent visit. He was pretty tickled with himself too. I don’t think he knows his phone number but he knows mine which is more useful for him.

4. Help with cooking twice a week and plan and shop for meals twice a month. I will be shocked if they tell me today that Robert has gone grocery shopping with them. Sometimes Robert does help set out everyone’s napkins and bibs which is a nice task for him. (Cooking is too big of a reach for him but I’m happy with this small amount of involvement).

My objectives at the time were for New Home to get Robert’s medication schedule correct (they finally did) and for the Regional Center to get Robert into a Day Program (which has been a complete success!).

It will be interesting to see today what they tell me as far completing these objectives (since I’m a little dubious about their reports) and what new objectives they come up with for Robert.

My new objectives for New Home are for them not to run out of things like toilet paper and protective briefs!