The costs of being a caregiverPosted by ally on August 11, 2020 at 9:11 pm
Caring for someone else can take a physical and emotional toll on the caregiver. Caregiving can feel rewarding and meaningful, it also has its costs. Favorite hobbies, free time, time with friends, energy and money can all be sacrificed in order to care for someone else.
What are some things you have lost or given up in order to care for someone else? What do you miss the most? Do you ever feel resentful toward your loved one because of the things you’ve given up?
Have you talked your partner about the sacrifices you’ve made to care for them? If you have, do you have any advice for approaching that conversation? Did you and your partner figure out a way for you to get some of those lost things back? (E.g. by hiring a professional caregiver.)
MemberAugust 13, 2020 at 2:35 pm
The hardest part of caregiving for me is interrupted sleep. My husband gets many episodes of frozen legs through the night. Each time he needs to get up to use the bathroom, he has to wake me up to help him get out of bed and walk safely to and from the bathroom. He often needs help manipulating his urine bottle because he needs to hold on to toilet rails so he doesn’t fall. Getting back into bed often takes 4 or 5 tries before he is lying comfortably. If we get 4 hours of uninterrupted sleep, we feel very lucky. I haven’t been this tired since I was a new mother almost 30 years ago. With an infant, you know that interrupted sleep is short-term. Being the caregiver of a spouse with PD isn’t a short-term situation. Today may be the best day, even if it feels like we are slogging through the mud of exhaustion.
ModeratorAugust 13, 2020 at 7:30 pm
That’s so difficult, Roy. I participated in a sleep study once in university and I was in the group that had to stay awake for more than 36 hours. I experienced first hand how being sleep deprived can impact your mood, focus and cognitive abilities in just that short period of time. Knowing that this is likely a permanent thing probably very demoralizing for both you and your partner. Is getting a nurse or PSW to help at night an option for you? Or what about adult diapers so your husband doesn’t have to get up in the night? (I know discussing both of these possible solutions could be a very sensitive topic for you both.)
MemberAugust 16, 2020 at 12:32 pm
Right now the most difficult thing for me is being aware every waking hour of where Doug is and what he is doing, without him actually knowing I am watchful. He wants to function as independently as possible but he does have cognitive impairment and often leaves water running, food containers open on the counter, the fridge standing open, and regularly goes through the house without his walker. Our house is very old, has uneven floors and several single steps between rooms. He has, of course, fallen many times, often requiring trips to the ER. By the end of the day I am exhausted as much mentally as physically.
ModeratorAugust 18, 2020 at 3:46 pm
Marilyn, I can only imagine the mental fatigue you experience from trying to protectively watch over your husband while also protecting his dignity and independence. <3 Have you considered getting your husband a monitoring system like a bracelet with a button he can press if he falls or needs help?
MemberAugust 19, 2020 at 3:28 am
I can relate to both sleep deprivation and the anxiety of trying to be aware of what my husband is doing and where he is. I very rarely have time to myself, we don’t chat anymore about ordinary things like ordinary couples.. all topics are based around him and or Parkinsons. My husband was diagnosed 2 years ago. In this for the long haul. Sometimes though I am not sure in my grief for what is being lost I am losing myself too.
MemberAugust 31, 2023 at 5:03 pm
Beryl, I want to cry reading this because I can so relate. My hwp diagnosed two years ago but non motor symptoms have been around for much longer and us not knowing it was PD. Depression, Anxiety, Apathy, etc. Some days I feel resentful because everything revolves around his PD, and I feel guilty because he can’t help it! I’m burned out emotionally. A lot of sacrifices for the caregiver. I too feel like I’ve lost myself.
ModeratorAugust 20, 2020 at 8:07 pm
Beryl, that sounds very difficult. What was your relationship like before your husband’s diagnosis? Have you considered going to therapy either together or alone to try to restore aspects of your pre-PD relationship and/or your independence? Is professional caregiving an option so you can get some respite and time to yourself?
MemberAugust 21, 2020 at 12:40 am
This has been on my mind so much the last week, as I become more and more resentful, angry, tired, annoyed, and whatever other adjective you use to describe my life these days. My husband was diagnosed 8 years ago,. And he was until about two years ago able to pretty much of everything. Now since some breakdown a year ago, that was, thank god, not a small stroke, nor an aneurism, but his decline has been steady as has his acceptance of having Parkinson’s. That still is an issue 8 years later, why me??
Covid shows up, and then more panic sets in. He has always gotten pneumonia clear out of the blue for as long as I have known him so he was convinced he was going to get covid and die. Mind you, he hardly ever leaves the house but to maybe to to a drive through to get food for himself. So since my son is the only one working in the house, we self quarantined in separate rooms, ate alone, which has made the dog totally confused, and we got through the worst. Now once or twice a week we will eat a meal together depending on his work schedule as he works nights. And my son now spends time in the room my husband spends most of his day in together watching tv, movies or just talking, as they have a great relationship.
But as of late, if I am driving anywhere the whole car ride back and fourth is “i do not feel good” or “I am in so much pain.” But this goes on 24/7. I get calls from him because he will not come downstairs to get food or his medicine unless I put it together for him and bring it up for him. I am no longer a wife… I am can you please bring me…. If I bring anything up, I do not understand, I am unsympathetic, etc. I suffer from migraines. And this August has been so bad for me, as it has been nothing but humidity.. so I do what I can for the house.. which is barely nothing… I take care of him first, my son, the dog and I am last. Which I know is wrong, but lately is not good, at all I know this. I honestly do know how much more longer I can be there. He does tell me he cares, and appreciates me, but I do not think he means it… because if he did, he would move more. Moving is so important in Parkinsons patients… he says he knows.. but does less and less movement all the time… to say I am stressed is an understatement.
MemberAugust 21, 2020 at 3:58 pm
My relationship with John pre PD, was wonderful. He was and still is my best friend, although the PD has robbed him of his smile, his sense of humour, his empathy and sympathy and much of his ability to express his emotions. John’s symptoms are mainly non-motor although his walking, balance and mobility is beginning to show changes now that impact on his / our daily life.He no longer drives anymore although he believes that he still could.
John’s speech is not good inspite of successfully completing the LSVT Loud course so I am not sure how effective a talking therapy would be as cognitively he has impairment with his thoughts and expression of those thoughts in a coherent way. I can understand by filling in the blanks but even I can’t do that all the time. I am sorry to say that we both get frustrated. I usually end up crying, usually on my own. I love my husband very much and my heart is broken.
We could and would talk for hours. We have no children. We just have each other. As for someone coming in to care for him. I do not think he would want to co-operate with that idea yet.
ModeratorAugust 23, 2020 at 8:25 am
Dawn, I’m very sorry to hear about the pain and struggle for you and your husband.
My Dad was diagnosed in 2013 and he has always had a strange relationship with the diagnosis, too. My siblings and I joke that he’s always convinced he’s going to die. But it has been 7 years since the diagnosis and he is still doing very well. We’ve combatted his hypochondriac tendencies with humor, telling him that we’re headed for the end of the world too.
And, of course, there’s always the possibility that something will happen and we will lose him. But I don’t want to waste any time thinking about that. It’s better to be here. For me, anyways. Are you finding helpful ways to take care of yourself throughout all the madness?
MemberAugust 27, 2020 at 7:29 pm
Hi Mary Beth.
I was reading all the letters here, and must admit, it scares me.
I was diagnosed last month, July, but am pretty sure I had PD last year after reading the symptoms. I am 83, and never thought of getting this disease. I am also a 27 yr breast cancer survivor. I do have a leaky heart valve, as of about 3 yrs ago, but it is doing fine. And I have lung issues from time to time due to bad allergies which if I can’t stop, go into more serious illness, but I have a way to treat that, if I catch it early. And, it usually works.
I moved here two years ago to be closer to my daughter, who is not that close to me, but will respond if I ask for help. She was with me for the diagnosis, and never said anything all the way home. She has not talked about it since, nor called to see how I am doing. I hear from her through Facebook. She is married. Was retired from teaching, but has gone back now, and will only have Friday’s off, which doesn’t leave for much time to care for me, as she has a husband, and a daughter, living with someone, about 45 min away. So, I try not to call. I have no idea how long before I can’t drive or do somethings I need help with, and I guess everybody reacts differently. The dopamine drugs have cause terrible nausea, and I am not eating right. So after only being on them 2 weeks, the doctor has taken then off. I usually weigh around 100, but got down to 97, and now, down to 95. I don’t sleep well, so I am concerned about both of these. I lost my appetite after the drugs, and now 5 days later, I am finally eating better.
I need to plan for down the road. I am concerned about care, the cost, etc. I want to do all I can now to help keep things under control, but not sure how to do that. I did read the importance of exercise.
At 83, I may not have a lot of years left, however, my grandmother lived to 99. Ha! I won’t make that at this rate. I have a son in WA who I am closer too, but he is married, and I don’t want to ever be a burden to either of my kids. I need to get some idea where to research for this kind of care, and what cost I am looking at, so I can figure something out.
Any ideas are appreciated.
MemberSeptember 22, 2020 at 1:57 pm
Hi Beth, I am the caregiver for my husband and he was diagnosed at 41 years of age and will turn 58 next month. It has been a long road and very challenging for sure. The best way to keep your body moving is to keep moving. Find something you like. Be social maybe go to a seniors exercise group, let them know you have Parkinson’s. Seek out a Parkinson’s support group somewhere you can go to meet other with Parkinson’s. They will help with some of your questions and will have suggestions, and life experiences with PD. Always keep in mind that everyone doesn’t look the same with Parkinson’s . Take one day at a time.
MemberSeptember 22, 2020 at 2:58 pm
Thank you Karen for taking the time to let me know your life as it is. I admire you greatly, as I know taking care of someone who has a disease is extremely challenging for both.
I will talk to my doctor about a support group. Since writing you, they have discovered a mass on my left lung, but the new primary doesn’t think it is cancer, however, he has prescribed more CT’s and blood draws, and breathing tests. So time will tell. In the meantime, I need to find a way to get back on the PD meds, as my hand shaking has gotten worse with this new challenge. I am sure stress is causing it.
You will be in my prayers, for we all deserve God’s attention.
MemberAugust 30, 2023 at 10:28 am
Hi Beth, did you look at 24 hours care at home ? Maybe the best option, we had a private nurse living with my parents. For us and them the best way to restore our parent – child relationship instead of parent – caregiver relationship.
Here’s an example
ModeratorAugust 31, 2023 at 4:43 pm
Hi Lize, how did you broach the subject of hiring support for your parents? Was it something your parents suggested or did you? How has your dynamic changes or improved since you hired professional support? Thanks in advance for sharing your experience.
MemberAugust 31, 2023 at 2:24 pm
No one can say that is easy being a caregiver. There are many costs to that role. It seems as if I am on “red alert” 24/7 and I’m always (all ways) hyper-vigilant. I am not a “worry wart” by any means and . . . Where I stand with my wife as she totters and may fall . . . when is help not help . . . when to shift focus on not the moment but what is needed/required over the longer haul? That sort of thing. One can consciously shift one’s focus when needed and it takes effort and re-programming the brain. There are the light moments and I work to watch for them, seize the moment and enjoy some humor. Even a wide smile can be shared. God forbid I should loose my sense-of-humor as a care-giver. My wife and I (she is the one with PD) in talking with others about the disease is to say, “PD, the gift that keeps on taking”. I sometimes worry about my capacity as an 85 year old man to keep going at the pace I do in the caregiver role. Fortunately my wife and I talk about that and make time to create plans for “what if” or “when this happens”. Having this forum is a gift to me as I stumble along the way of caregiver . . . a role I never imagined I would be in. My support comes from family and friends and they are so good at asking “how can I help”. I’m blessed to be able to both give and get help.
ModeratorAugust 31, 2023 at 4:41 pm
Thanks for sharing your perspective, Gil. It sounds like you have a very strong, loving and healthy partnership with your wife and I was so glad to read that you have others around you who support you both, too. Do you have any advice for other couples in terms of navigating the “what if” and “when this happens” conversation? I’m sure it’s a on a lot of people’s minds but some might not be sure where to start or how to bring things up.
MemberSeptember 3, 2023 at 6:17 pm
This is the hardest thing I’ve ever had to do in my life. In short terms my life is basically on hold. I take care of my 86 year old mother who was diagnosed with a form of Parkinsonism and she lives with my husband and I. I have to do help her with absolutely everything, but that’s not the hard part. The hard part is watching her go down hill day by day. Some days her body twists like a pretzel, especially when she stresses out, making it so hard for her to walk. She can’t use a walker because of the left arm which she has dystonia really bad. This disease doesn’t run in the family bit she did work in canneries all her life. I can’t go anywhere because she doesn’t like me to leave. I love her very much and I guess I have an opportunity to repay the love, compassion and kindness she gave me! It’s not easy but I’ll give it my all!
ModeratorSeptember 5, 2023 at 4:05 pm
Oh Mary, my heart was aching reading your post. Watching a beloved parent struggle is beyond painful. Your mum must be so glad and grateful to have you in her corner, and it says a lot about her as a mum that you would want to care for her during this time in her life.
Your self-care is important, too, though. Do you have any paid help part-time? How do take care of yourself so you don’t burn out?
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