The Cost of Chronic Illness for Caregiver

[Corrie Trattner]

Not sure where to start in this discussion.  My husband officially has had Parkinson’s for 4 and 1/2 years but assuredly it has been much longer prior to the actual diagnosis.  In addition to watching his motor, non-motor, and cognitive skills decline, I think the greatest cost is the loss of the emotional support that he used to be able to give.  Although he’s still the caring person that he always was, he’s no longer able to express it either verbally or non-verbally.  Much of the time he’s very sleepy, repeats a lot, doesn’t really carry on a conversation except within very repetitive, limited interests, and our communications essentially can’t be more than a few minutes and often only a few sentences at a time.  He also has bipolar disease, diabetes, vascular, blood pressure and thyroid issues, glaucoma, and insomnia for which he does cat naps all day long.  Recognizing how much he has declined in 4 and 1/2 years not only blows my mind, but gets very depressing, sad, and at times maddening.  Sometimes it’s hard for me to separate my anger to keep it contained to just the disease as opposed to being angry with him, too.  Some of the most challenging issues for me is the up and down nature of the disease so that I never know when he is going to have a good day or even a good hour, and seeing sudden massive declines in function from which he never really recovers despite the amount of physical therapy he might be able to get for each episode.  In addition, the struggles with the insurance companies, the rehab departments at each hospitalization and home care therapies to keep him on service, myriad of doctors appointments, and doctors not seeing the dips in function in the 15 minutes they spend with you are highly frustrating.  Many times I find myself praying that I will have the strength, resilience, and fortitude to see this disease to the end, as things will become even worse than what they are now.  With no end in sight, I freak out about the huge financial cost since my husband has had to be in an assisted living this entire time.  I continue to work full time for financial reasons and to keep my sanity in an effort to have some sort of balance in my life.  Furthermore, when I had tried to keep him home, he would  call 911 several times a day because I might have been 5 minutes late from getting things he needed because of traffic or lines at the cash register.  There were many days that I came home to finding the EMT’s at my house because my husband was petrified and many other days that we had to call the EMT’s because I couldn’t pick him up when he fell or because I couldn’t always get him up and down the stairs or in and out of the bathroom, etc.  At times I get really angry when people say to be sure to take care of yourself when being a caregiver can be a 24/7+ job, especially during the “crisis” times.  It gets even harder with each episode when I suddenly have to do even more juggling to be sure that work is covered because doctors won’t return your calls, or expect you to be at hospitals, rehabs, and skilled nursing facilities during the few moments they might be there after you’ve waited for them for hours.  I’ve had experiences where nurses told me on the QT when the doctor makes his rounds so that I could get literally 2 minutes to beg him to write in his notes to continue physical therapy so the insurance company wouldn’t discontinue treatment.  Needless to say, the entire process and it’s long downward spiral are extremely emotionally draining and physically very exhausting, especially when I have no family living near by.

Despite it all, I would like to work to improve the lot of caregivers, as we caregivers are a much under-served and much unnoticed population.  Thank you for listening and for this opportunity to voice some of my feelings and concerns.

Corrie T.

[Deleted User]

corrie, my heart goes out to you.  you are a brave, strong woman and I commend you for caring so much for your husband.  i do not have a caregiver.  i was diagnosed in 2015, 7 months after my husband passed.  i miss him terribly, but, I would not want him to see me deteriorate.  It must be such a hard job for the caregiver of someone who has PD, especially if the caregiver is a spouse.  The disease itself is so unpredictable in terms of how it affects one from day to day and like you say, hour to hour. This further adds to the difficulty of caring for someone you love with PD.   May you find peace…

[Corrie Trattner]

Thanks so much, Jean for your kind words of support. I greatly appreciate it. Corrie

[Deleted User]

Corrie, i am sure you are an inspiration to many…everyone is worried about those of us with PD but caregivers need to be acknowledged for the difficult job they have.

[Mary Beth Skylis]

Hey Corrie,

Thank you for your thoughtful comments. First of all, I’m really sorry that you’re going through this. As the daughter of a man with Parkinson’s, I can certainly relate to the rollercoaster. My Dad is a little fighter, and he gives PD his all on a regular basis. But it hurts to see how much the disease takes from such a kind man. He, too, has seen a bit of a decline in speech but he has always been quiet. I think the hardest part of being a caregiver is figuring out how to take care of yourself while someone you love is suffering. I want to be available to my Dad, to make sure he doesn’t have to face such an awful illness alone. But it does get to me. I’m a columnist here, for Parkinsons News Today. And I often find myself not wanting to write about his struggle because talking about the disease dredges up lots of feelings. My superhero Dad is sick. And PD takes more than its share on a daily basis. Writing about it on a regular basis is a constant reminder that he’s struggling. But at the end of it all, I think that talking about it reminds us that we’re not alone. And I try to remind myself that we’re no good to anyone if we don’t take care of ourselves.

 

[Corrie Trattner]

Hi Mary Beth,

Thanks for your response.  I agree that it’s hard to discuss the caregiver issues because, at least for me, it’s hard to ask for help and hard to expose feelings that others may not understand and end up being judgmental in their failed attempts to be supportive.  Plus the expectations from our culture to be independent, I find, makes it even harder to ask for help even when it’s legitimately needed.  I find the unpredictable nature of the disease particularly difficult to deal with, as I feel that I can’t make commitments to do things that would help me feel better because I never know when I’m going to get a “call” from the assisted living.  So, I’ve found myself not planning to do activities more than a week in advance, because I don’t know what is going to be happening with my husband at any given time.  My only thought is to do as many and as frequently stress relieving, enjoyable, and meaningful self caring type activities that you can that are short and can be done in varying intervals.  That way you’d have the choice of which you activity (ies) you’d want to and could pursue at any given day, or time.  Please feel free to write your thoughts.  Undoubtedly, they will be helpful to everyone, and to you, too.  Since you are a columnist for this column, no doubt that your writing would be to the point, very expressive, and sincerely felt by everyone.  Thanks so much again for providing us with this opportunity.  Corrie

 

[Corrie Trattner]

Hi Mary Beth,

I’ve been thinking about you and hope that you are able to find some peace and comfort and are able to reflect on times when they seemed just perfect with your dad, especially during this holiday season.  Remember to take care of yourself and see yourself as a devoted caregiver who deserves and has earned well deserved TLC.

Sending you positive vibes and hugs,

Corrie

[Cindy]

For me, the sudden loss of our ability to be able to plan anything is shocking, and terribly depressing. I’m talking about things like, walking the dog together, or going errand-running, or to the movies, the gym, anything. My wife was formally dx in 2014. They said she is a “slow-progresser”, which doesn’t translate at all to what we deal with every day. She had DBS on one side October 2018. Before that, she did Rock-Steady Boxing (boxing for those with PD) and worked part time. Since then, she has not been able to work, nor do Rock-Steady. I think her cognitive health is declining because she cannot do the things that sustain her. Add in my own health issues, and its one big depressing picture over here…I know all about self-care but just don’t have much band-width for it. This is the first time I’ve posted anything. In the past, for other awful life events, online support groups were the only thing that sustained me. This time around, I’m just burnt out thinking about having to do ONE. MORE. THING.

[Mary Beth Skylis]

Cindy,

I’m really sorry to hear how hard things are. My Dad has PD, and the progression has changed the way we function as a collective too. But I think it’s really great you’re willing to talk about it.

Band-width is a serious obstacle! Sometimes, by the time we address all of the essentials, there isn’t much energy left for us to delve into hobbies. Do you think part of her struggle is fatigue? I know that with my Dad, his body never really rests. And he has never been a very consistent sleeper, so he often wakes and is still tired.

What kinds of things give you a renewal of energy? I know that I feel better after going for a short walk or playing piano. There are a handful of activities I’ve found that feel very cathartic (like playing music, writing and painting). And I’m not very good at maintaining consistency but they do seem to lift some of my burdens.

[Corrie Trattner]

HI Cindy,

I hope that you’ve been able to get and give yourself some R & R.  I can relate to what you are saying when it comes down to feeling as though caring for yourself is just ONE MORE THING.  There were many times that I wanted to strangle people who told me to be sure to take care of myself, especially when it was one of the “crisis” times.  It’s really hard to figure out what to do when all you can do is sit on the couch and stare at 4 walls or the ceiling.  If that’s what you need to do, then do it, and give yourself full permission.  One of my strategies is having the TV on whether or not I’m watching it just to feel as though I have company in the room and the escape when needed.  It’s amazing that I don’t have episodes of Criminal Minds, SVU, and NCIS Los Angeles and New Orleans memorized verbatim with all of the repetition.  However, one thing that I do find helpful if listening to books on CD or audio on your phone.  I drive an hour round trip to see my husband in the assisted living, and many times the books on CD were the only thing that held me together.  It gave me the opportunity to feel productive while being distracted and still doing the main things that really needed to get done for the day.

I hope this helps.  Take care and sending healing vibes,

Corrie

[Mary Beth Skylis]

Corrie,

Thank you for those tips. I’ve recently discovered audiobooks and podcasts and I find a lot of relief from the temporary distraction too. What are you listening to right now? Do you have any favorites?