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. 

My Hoarding Tendencies

Robert died just over 10 months ago and I just yesterday boxed up some of his clothes. 

When he first died, people from his facility and day program wanted a memento to remember him by and I was so touched by their requests. People wanted a piece of Robert because he meant so much to them. 

I gave the Director of Nursing one of Robert’s Hawaiian shirts. A beloved staff member of Robert’s got one of his many 49ers hats. Robert’s lunchbox was given to his sweet day program administrator and she still sends me touching messages about how she often thinks of Robert during her lunch break. Robert’s bingo chips went to his lovely activity director. 

We gave wonderful Pattae one of Robert’s 49er sweatshirts. We still keep in touch with Pattae and I send her caregiving jobs information when I get wind of them. How can I not keep in touch with Pattae? 

Soon after Robert died, a friend’s dad fell on hard times and needed warm clothes. I boxed up a few of Robert’s sweatpants and shirts and gave them to her for her dad. 

The rest have sat in Robert’s dresser drawers or in his closet. Shorts he stopped being able to wear years ago, PJs he wore when he lived with us (I still picture him wearing these long back-closure pjs pushing his walker down the hallway), camp shirts with the Velcro buttons – even his Velcro close shoes. I have a drawer full of t-shirts he got from day program events and for each year of Epilepsy Awareness Day. He has a couple of ties – a 49er one for game day (of course) and another he wore to our dad’s funeral. 

We have his 49er blankets (yes, there are many) and dozens of reading glasses (I always had to have back-ups with me, in his room, in his go-bag – everywhere!). At least the glasses are now in a bag ready to donate to an organization that reuses frames and lenses. 

I was able to box up his shorts, a pair of sweats, knee-hi 49er socks and a few of his camp shirts. He was particular about his shirts. They had to have a pocket so he could keep his glasses in them. They needed to be Velcro-close to make dressing easier (first, when he could dress himself, then for me when he couldn’t any longer and finally for the Skilled Nursing Facility staff when he lived there). 

His red shirt still smelled like him. He loved that shirt and was in it often. 

I left that shirt (and his Route 66 shirt) in a drawer. His shoes are still there too along with a 49er jacket and those ties. 

Grief shows up in different ways and there is definitely no timetable for it. No “normal” way to grieve. There is no “normal’ way to part with a deceased loved one’s things. 

I recently read an article about this very subject in which Dr. Jason Singh explains that “getting rid of their things may feel like participation in their erasure.” I certainly don’t want to “erase” Robert and know that I won’t given our continued connections to those who loved him. Keeping those friendships reminds me how much joy Robert spread to everyone who knew him and how loved he was. 

Keeping those connections is more meaningful than keeping his shoes but I don’t think I will ever be ready to get rid of all of his things. Heck, I still have some of my mom’s shirts and she died 27 years ago. 

Do I have some hoarding tendencies? Sure. It’s not all bad, though! I am the person who people come to at work when they need a document from 25 years ago or wonder where our summer picnic was held in 2007 (a local bowling alley, in case you’re wondering).

Whether you dispose of or donate your loved one’s things soon after they are gone or you hold on to them for years (or something in between), know that you are doing exactly what is right for you. 

There is no right or wrong when it comes to grief.