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What has been your greatest challenge as a caregiver?
Caregiving involves a lot of different responsibilities. Depending on the situation, you may cook meals, help to bathe the person you’re caring for, and any other number of things. Some responsibilities are more difficult than others. What has been your greatest challenge as a caregiver? How have you learned to overcome it?
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33 Replies
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My greatest challenge is how PD chips away at us, a thief who eats him/us little by little. Dreams for our future disintegrate on a regular basis. He cannot hold my hand when we walk without losing his gait. He cannot slow dance anymore as it is too much for his brain to process. Intimacy has waned. I cannot often hear him well due to the voice weakening. Etc…..
I cope through mindfulness mediation and learning to practice gratitude for how well he really is doing after 20 years with him now just 69. It helps. I am most grateful for deep brain stimulation. I also try not to peer into the future as that can be very bleak and just speculation anyway.
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Wow, Marjorie…. I felt like I was reading my own thoughts with your words explaining what you feel. Chipping away at us is how it feels for us too, but my husband in particular with the Parkinsons, I am seeing more and more it’s grab of his abilities. His gait is a disaster and only getting worse and there are only so many times I can catch him without injuring myself and we are still in our 50’s. 20 years later things are definitely changed, he also had DBS in 2012 which was a Godsend but Sinemet is causing all sorts of cognitive and dyskinetic issues depending on whether ON or OFF. Voice therapy we started a month ago as I can barely hear him most days… the Lee Silverman therapy is very good and its interesting how the therapy really comes down to knowing you have the ability to raise your voice but the KEY ingredient has been cognition… Remembering to speak loud, and that is a real challenge.
I agree with you that gratitude for what we have is a big thing, but also understanding how stressful it can be to the relationship, and having friends and family understand that and support us is one of our biggest challenges. Most people just do not realise how serious PD is on a relationship.
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JB, thanks for the response. My husband did the voice therapy and it made a big difference but he is reluctant to keep up with the vocal exercises to maintain it. I had to call him a fin asshole recently (and we are not ones to call such names) to get him to focus on my need to hear him so our relationship does not suffer more. So we practiced them one day and that was two weeks ago. Are you laughing with me on his diligence? I guess I will have to come up with a stronger name to call him. lol
Rock Steady Boxing classes have helped him with balance so if it is available in your area, check it out.
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I am definitely giggling and it reminded me of what I called my husband last night in our bickering and it included ‘that ‘a’ word’ you said above…. 🙁 Gosh as always, I felt so guilty afterwards because as someone said on the forum here, it’s not his fault he has PD….. It’s basically my fault for being so impatient with him. it is SO frustrating when as you say, you NEED to hear what they are saying. The only words I seem to use most every day now, at least 50 to 60 times per day is ‘sorry’, ‘can you speak up babe’, and ‘I can’t hear you’…. oh dear.
I hear you on the diligence and we have practiced once last week and so far not at all this week, but I will leave it up to him… he will tire of it before I will I feel. It impacts every social situation as I’m sure you are aware…. :-O I’m sure a different name would be funny to begin with, naughty….LOL.
Rock steady boxing is not here but there is similar and we went once but because he is younger and fitter it was a total waste of time. The other people there were very elderly bless them and doing really well, but it just wasn’t for him at all. We have since bought some gloves and pads to try doing at home ourselves to improve his balance… I do think it has merit totally.
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Hi Majorie,
Thank you so much for sharing your thoughts as you’ve been caregiving your husband. I am the caregiver so caregiver for my mom diagnosed since December 2014 and much to my surprise I was diagnosed in November 2020 with Parkinson’s as well. I’m trying to be strong physically mentally and emotionally for both of us but my mom has lost interest in many things that she used to really enjoy. As well as losing her gate and she is so afraid of falling even though she has not fallen in a while. We have done physical therapy she does not seem to want to do exercises for me. I am trying to do more mindful meditation for myself as the stress & anxiety I am experiencing is overwhelming at times. Every day I try to remember what I’m grateful for and all the blessings that we do have each other I just feel like if there was a way to get a break at times that might help. Thank you for your thoughts and I wish you well in your journey Beth Ann
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Hi Majorie,
Thank you so much for sharing your thoughts as you’ve been caregiving your husband. I am the caregiver so caregiver for my mom diagnosed since December 2014 and much to my surprise I was diagnosed in November 2020 with Parkinson’s as well. I’m trying to be strong physically mentally and emotionally for both of us but my mom has lost interest in many things that she used to really enjoy. As well as losing her gate and she is so afraid of falling even though she has not fallen in a while. We have done physical therapy she does not seem to want to do exercises for me. I am trying to do more mindful meditation for myself as the stress & anxiety I am experiencing is overwhelming at times. Every day I try to remember what I’m grateful for and all the blessings that we do have each other I just feel like if there was a way to get a break at times that might help. Thank you for your thoughts and I wish you well in your journey Beth Ann
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I am able to motivate my husband when I remind him that if he does not exercise and it affects us and not just him. Maybe that will help your mom see how important it is. I am glad my sharing has been meaningful to you
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Majorie, Jules-Bunny…….both of you articulating what I feel on a daily basis and am mostly at a loss as how to cope. My husband was diagnosed in 2013 and had slow progression until the last couple of years, but now the cognitive failure is turning our days into mostly nightmares just like the nights. I see him shrinking before my eyes and his eyes are often a blank stare of not understanding, where a quick smile and laughter used to be. I can deal with the physical issues fairly well, but the dementia is so hard. Sometimes I think I have it handled, but then I become frustrated, impatient and I don’t! It is good to know that I am not alone in my thoughts of feeling guilty when I loose my temper and want to bang my head against the wall. I try to walk or go to the gym most days of the week to make it all feel better for a while.
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My greatest challenge has been to not give up and walk away some days. I know that may sound selfish.. but there are days when I ask myself how much more can I take? And these are when he is on his pity party days, I am going to die soon days, I can’t take this anymore days. When he refuses to try, to exercise, do for himself, act like he cannot do anything,, so I have to take a step back, breathe, talk to the dog, mutter, and pray next year I will be able to get away with my sister.. two years without a sisters getaway is not good for ones mental health!!! Thank you for listening!!!
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I fantasize about him dying and my feeling relief so I get it. Have you looked into respite care?
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Marjorie, it must be very difficult to handle what you’re going through. Have you been able to find any support for yourself and him?
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What is respite care? Where do I find out about it? I am so mentally tired. Whenever the least little thing goes wrong, I go into a depression. I am just tired of it all. We are fortunate to have aides. I am grateful for that. I am 85 years old & cannot deal with all this awful stuff like I used to. I want to continue having my husband home as I know I will give him more love, consideration and care than a skilled facility. Please, can someone give me some suggestions? Thank you in advance.
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What state do you live in? EAch are provide differing things.
Respite care provides short-term relief for primary caregivers. It can be arranged for just an afternoon or for several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center.
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I totally get you Marie and Marjorie. I have been the only one helping my mom for a few years. I had to sell my home and move in w/her full time July of 2020 plus I work full time. Marie I hope you get that sisters get away next year. My sister is finally giving me a break next week and I am taking my dog and headed to the Outer Banks. I haven’t had a day to myself in 1 year and 8 months. Like Marjorie, this leads to thoughts of death. Then I feel guilt for thinking this way.
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Thank You, DTM – I hear you loud and clear! I swear I’m hearing an echo – of what’s inside me, too. More later; I’m exhausted… from a kindred spirit, struggling
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As her husband and caregiver who infrequently left her by herself,I purchased some pendant alarm buttons that sent a signal to audible alarms in the house. But when she had a fall or more often slid off the bed when sitting while doing something, she would rarely think to use it and not because she was incapacitated. I searched the internet for a tilt type pendant that would provide a similar alert. I could not find anything.it was very frustrating since I could respond ,used it.
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My husband passed on March 6th after 5 and 1/2 years of continual decline after we finally were able to get a diagnosis. That doesn’t count the years of decline leading up to his having to go into rehab and then into an assisted living. I have to agree with the person who said that Parkinson’s is a theif taking away everything bit by bit. I remember one day standing in the parking lot after seeing the dermatologist who told us that his skin breakdown on his hands was due to the Parkinson’s screaming to the sky, “What else is this damn disease going to rob from us???!!! – even his skin!!!” That was about 4 months before he passed. Sometimes I wonder how I coped, but often I would pray and hum spiritual tunes to myself and sometimes sing them outloud when I was at home alone. That seemed to help. I don’t know if I felt relief when he passed, but I was grateful that his suffering had finally stopped. Daily I pray that he’s now at peace and happily reunited with his brother, parents, and our first grandchild.
When I feel less overloaded, as I’m finishing up my full time job of college teaching after 30 years to retire at the end of the month, I hope to help develop and provide services for caregivers. There is a sore need out there for us caregivers or carepartners and I’m open to any and all suggestions.
Thank you and blessings to you all,
Corrie
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My wife had Parkinson’s for over two decades but it was not until the past several years that the decline became more a drain on her quality of life. She never complained about her affliction. The falls became more frequent and some more severe than others. Her voice changed, she started losing dexterity in her hands, more balance issues. But she did not want the disease to defeat her. And in the end it did. She did not pass from the disease but a devastating fall down a flight of stairs trying to help out with a household chore. I never let her go up or down stairs without me helping her. But she was determined not to let the disease keep her fr0m doing activities that were a part of her life as a homemaker.
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What a great idea Corrie. I am an author and would be willing to assist you if you move toward writing a book.
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Hi Marjorie,
Sorry that it has taken me so long to answer. Acutally, I just noticed your answer and gracious offer the other day. So, my sincerest apologies.
I hadn’t thought of writing a book because a coworker and I thought we’d write a text for one of our courses and ended up abandoning the project. There just wasn’t enough time, and I think we undertook too much. We had to cancel the contract after several years.
I was considering several professional articles now that I’m retired. However, I’d love to talk with you about the possibilities, especailly since you are an author. Why don’t you email me on my home email and maybe we can find a time to talk on the phone. [email protected].
Would that be OK? Thanks so much,
Corrie
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Hi Marjorie,
Sorry that it has taken me so long to answer. Acutally, I just noticed your answer and gracious offer the other day. So, my sincerest apologies.
I hadn’t thought of writing a book because a coworker and I thought we’d write a text for one of our courses and ended up abandoning the project. There just wasn’t enough time, and I think we undertook too much. We had to cancel the contract after several years.
I was considering several professional articles now that I’m retired. However, I’d love to talk with you about the possibilities, especailly since you are an author. Why don’t you email me on my home email and maybe we can find a time to talk on the phone or email each other about this, so that we’re not taking up people’s time on this site. [email protected].
Would that be OK? Thanks so much,
Corrie
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Totally agree with the person who said that Parkinson’s is a thief taking away everything bit by bit. My husband is 70 today and has known about Parkinson for 5 years. Looking back, it has been longer. His father died of Parkinson when he was 50 years old. Slowly, I’m watching how my husband struggles with his walks, day by day it is getting tougher. Even on remembering what to do. He still walks on his own, showers on good days, eats on his own (a bit messy). His speech is slower, and getting tougher to come up with the right words. Signs of Alzheimer. I prep meals, clean house, walk the dog ( my therapy), write daily notes for him, like the dishwasher is clean so leave the dirty dishes in the sink, I label snacks in refrigerator, what’s choices for lunch, etc., and do all the chores in and out of the house. I have an alarm clock to go off every time it’s time to take his pill (with labels on the pill box on which ones to be taking). He is my husband, my friend and I fear of being alone some day. Then there are days, I curse, I’m mad and feel weighted down for trying to care for everything on my own because he is incapable. I often wondered, how long will this be? How much time do I have with him? Do I keep planning vacation trips year after year or will this be the last one? Traveling is not easy but he still isn’t in a wheel chair so I started to travel with a diaper bag. I’m still working full time since I haven’t reach my age for full retirement. I still take him with me on every errand I run on weekends. I take him with me to get pedicures (cheaper than having the doctors to do it), we watch movies on Netflix and sit on the front porch. I’m thinking this will keep him alive and moving. Dog walks are too much for him. By all means, pandemic hasn’t helped. We were to travel once I retired in three more years. Mostly, I’m totally stressed but coping. I tell myself over and over, this awful Parkinson disease is not his choice. Bless his heart for not being mad at me!
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Have you tried Rock Steady Boxing. It has helped many with balance, gait, etc. and in this site I read good things about mannitol and OTC sugar
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It is a really good thing to do when you have Parkinson. My Mother did boxing for about 2 years before she became wheelchair bound. My husband has no interests in boxing and I tried to get his brother to take him and box with him. I also think we’re too late for this form of exercise to fight Parkinson.
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Sandy, I’ve had some trouble getting my Dad motivated to exercise, too. I think that boxing is off the table because the nearest RSB is too far away. But it seems like there’s always something that’s accessible.
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Dear Sandy,
My heart goes out to you, as I must confess that I felt many of the same volitile emotions. There were days when I tackeled everything and essentially tried to hold a stiff upper lip while other days I was totally overwhelmed, angry, distraught, and besides myself. At those moments, not only did I not know what to do with myself, but thought that I wasn’t going to make one more minute. Somehow I did, as we all do. Essentially, we do what we have to do as best as we can. I’m not usually a person to ask for help and often would get angry when people would tell me to be sure to take care of myself. “They are not in this situtation and don’t understand what it’s like!” I would say to myself in a most frustrated state of mind. Fortunately or unfortunately, the fact is that both statements are true. Nothing like being stuck between a rock and a hard place.
If I had some pearls of wisdom that would make everything OK, I certainly would share them with you. However, if he is still mobile and can walk, get up and down from a chair, get in and out of a car, feed himself and take a shower, you are still way ahead of the game. My husband loved to travel, which I had to discontinue because it became just to hard to manage him with everything being out of our routine. In hindsight, maybe it would have been better had I hired people to travel with us, although I don’t know if that would have worked out well either. My only suggestion, if it’s even of any value, is to try to enjoy every minute that you can whether it’s travelling or just sitting in front of the TV watching Netflix. You’re right to keep him moving, as any kind of exercise, even if it’s unofficial, will help to keep him at his current functional level.
Just try to remember that you really are a super-super coper and are doing a collosal job. I hope this was helpful. Otherwise, hit the delete button.
Blessings and G-d be with you both,
Corrie
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Corrie,
Thank you for listening. I know you heard me and totally understand where I am coming from. It is almost a year since I had lost to my mother with Parkinson at 95, right before Thanksgiving. Her Parkinson fight was more on the old age mobility with getting around. Her mind was sharp and she was a good listener, like you. I miss talking to Mom and thank you for filling my empty hole by listening. I’m sure my days will be coming soon with not being able to travel much longer, like in your situation. I’ll keep my chin up and hold a stiff upper lip and keep on moving him. Once again, thank you! Your message truly meant a lot to me. G-d bless you.
Sandy
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Articulate, feeling it all…….thank you.
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My greatest challenge as a caregiver has been balancing self-care with the demands of providing continuous support. It’s crucial to find moments for personal well-being to ensure sustained strength and resilience in caregiving.
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Except for motivating and making exercise regularly, it was very hard for me to help my dad take a bath. He is a big man and it was difficult to wash and hold him at the same time. Later, I looked through the Safe Step Tub reviews and we decided to buy it. I should say, it made my life easier and now it is more comfortable to bathe for both of us.
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I agree that it is a disease that indiscriminately steals our loved ones bit by bit and doesn’t spare their family as they are left to witness the devastation it leaves in its wake.
My younger sister was diagnosed with young onset Parkinson’s ten years ago. I have been the point person for her care ever since because she is divorced.
When she was initially diagnosed I never imagined that what we would struggle with the most is her cognition. She was so smart, organized and had the best sense of humor. She was the clown of the family. Now we seldom see that aspect of her personality and she is obsessed with being a burden. We are forever reassuring her and I feel challenged at times when I have to spend so much time trying to explain to her that I don’t consider her a burden. That I love her and I know she would do the same for me. Some days I feel emotionally drained by having to constantly reassure her and then I feel guilty because I know if the shoe was on the other foot it would be very difficult for me to be so dependent on others for help.
I cope by seeing a counselor and being reminded that we all have limits and that it is important save some of our compassion for ourselves.
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My greatest challenge in caring for my husband who is in advanced stages is being able to balance having (needing) to work full time outside the home & then take care of him when I get home. I’m I’m having great trouble in keeping the anxiety I have at bay as well as the depression.
I have a hard time accepting this awful disease and seeing my once vibrant & full of energy husband decline in health. He can barely stand without assistance, make his own meals, open containers, shower or bathe himself, walk without assistance or put himself into bed.
I have no real support system. I can no longer attend church service in the evening and I have to make sure my daughter (who has a family of her own & her own responsibilities) is available to come help him if I have a church event in the evening.
I have a challenge in finding any kind of Parkinson’s support group (our “local” chapter is 6 hours away from my home) or a caregiver’s support group who meets on Saturdays as I work full time.
I’m stressed to the maxed & some days I just want to “tap out”.-
Hi MimiRiaMaria,
I’m so sorry that things are so tough. Parkinson’s is really hard to face. It sounds like you have a tremendous amount of work on your plate, and you’re watching your husband lose abilities at the same time.
I know it seems impractical to add anything else to the mix, but I’m wondering if you could establish a Parkinson’s group closer to home? Or find some services that could pitch in? I know some people have meals sent to them, or a helper come in to address things like baths. Just wondering if it’s a possibility.
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