Helping Those Who Care for Parkinson's Patients
| [Home] [Forum] [Help] [Search] [Register] [Login] [Donate] |
| You are not logged in |
|
| ||
|
I'm not usually one to complain, but I'm getting pretty tired of being Hubby's caretaker. I'm a 93 lb. woman trying to lift a 150 lb. man. It just doesn't work. Just helping him out of a chair puts strain on my back. Our son lives next door and comes over to help but he's not always available. Funny thing is when i was a teenager I thought I wanted to be a Physical Therapist when I grew up. I wanted to help people. But not at 81 years old!! |
| ||
|
I'm 51, and I'm tired. I started caregiving when I was 36, but after they finally diagnosed Parkinson's, she did pretty well for 4-5 years (although dad had some troubles in those years). But since 2015, it's been a full time job after my full time job teaching. And on my "vacations", caregiving just takes up all the "extra" time I might have anyway. ... I can lift mom fairly well, but she only weighs a few pounds less than I do, so it can be difficult or awkward depending on where she falls down. When dad passed of heart and kidney failure a couple years ago, I could help him to the bedside commode (during the last 3 months) even though he was about 200 pounds, but he could still bear much of his weight until the very end. I knew there wasn't much time left when I couldn't lift him anymore because he wasn't bearing any weight on his own. |
| ||
|
I have pulled up this Forum to see if there was any new activity and realized that "Burned Out" feels very much like what I am going through. A social worker just left and I feel embarrassed, ashamed, frustrated, depressed, overwhelmed, you name it. My HWP's physical therapist/case manager reached out to the social worker with concerns and apparently said "Everyone is upset about everything". Now there really are several ways to take that but of course I feel offended because that is just me. I know she said this because the social worker mentioned it during this visit. I know there is no easy answer and not one can help me until I know what to ask for, what help we will be able to accept that works for the way life is hitting us. But how should I feel? I am 100% disabled myself with this Traumatic Brain Injury, my body and mind don't seem to work right, I sometimes have trouble walking, talking... last night I had such a bad migraine that I was totally dizzy and nauseous. My HWP alternates through so many levels of ability that I never know what I am going to get; it is a sucker punch at every turn. So many of the advisements on how to handle someone with dementia must be based on someone who has a set decline but since this dementia is all over the map so much of what they teach cannot be used. He wants to go home, is upset and sad, but asks me if I am just going to give him ice cream again. I know it does not matter that I am burned out because there is basically no alternative. I need to get my Ps and Qs under control if I think I am going to try and contact our "village" to ask for help. My emotions feel raw. The social worker gave me the "list 5 things you are grateful for" which of course makes me feel "ungrateful". I AM grateful and do work at thinking about those things as well as attempting all kinds of tips and tricks to find calm in myself and in my actions. I love my husband dearly and only have love in my heart for him. I have begun so many messages to you all that never got sent. I feel like a big fat complainer but am going to send this out anyway. Maybe many of you reading this will identify with me even if you do not reply for one reason or another. Give yourself a pat on the back today. I think of you all every day and you keep me going- NoMatterWhat |
| ||
|
I'm a right there with you. Mom's Parkinson's is all over the place, as his her dementia. We're on week 2 or 3 of the full doze of Memantine, and Monday was just awful. She got up between 5am and 6am (which normally she cannot do), and puttered around making her bed and whatever else. I was exhausted. I finally told her at 7am that I had to leave for work so I need to get her in bed before I go (the caregiver doesn't show until 9:15, so I don't want her wandering around and fall down, or have her turn suddenly to "off" time and not be able to get around anymore). Mom looks at me and says, "Why do you have to go to work? It's 12:30 at night." ... After I got home she was equally confused, with her Parkinson's all over the place. I started to consider stopping the Memantine. But I didn't. ... Then yesterday (Tuesday) she was fine. Seemingly clear headed, at least far more than usual and the day before. She only had an hour of off time in the evening and the rest was good to tolerable. And I have no idea why. Maybe there is no why. ... Over the last month I started to slowly realize that I have no back up family members to help with anything anymore. Her one brother was my "emergency" plan if I needed to call someone for whatever reason, but he ended up in the hospital a couple weeks ago. He's home now, but now I don't think I'd call him even if I needed to. If worse came to worse I would just have to add caregiver hours, which comes out of mom's funds. Between dad's pensions and her SS and retirement, we could afford 7 hours a day (we're doing 4 now), but that would mean all her money would go to that and nothing else. I'd have to start paying for her co-pays on meds, and everything else. ... Anyway, I probably don't know as much about being scared your own health will keep you from caregiving, but I did feel a little panic a couple of months ago when I got the flu and could barely get out of bed for 3 days. I could do enough to do her meds, her bed, get her food and drinks, but she luckily had 3 good days in a row and the caregiver was there 4 hours a day. If my appendix burst or something, I am not sure what we would do. |
| ||
|
Hey NMW, you're entitled to your feelings whatever they are and people shouldn't be offended when you express them. YOU'RE the one who has to put up with it every hour of every day. Don't be afraid to come on this forum and vent whenever you want to. May God bless you - ALWAYS! |
| ||
|
Hello again Poollady, Greyeyed and all. It had been all quiet in the ranks lately. I wonder if being burned out is the reason. I check back but it seems everyone is holding their own or is too exhausted to do anything about it. I myself got pushed so far that i had a friend come cover me so i could go to an in-person caregiver group-i went early and in tears. What good it did me. I am looking forward to making it to that group as well as my TBI group each and every month. I sure wish this group could meet in person but I will take what I can get! I hope you all are hanging in there. Poollady, you said you felt burned out and yet you have continued on. I think of you often and marvel at your strength and humor. Greyeyed, you are quite something too, juggling your mother’s tricky med schedule, family, work, etc. I am just incredulous that there is so little of your school year left already. Reach out when you need to. The rest of us are here to offer the support that may help you through the rest of your day. I am feeling very lucky to have you all and just wanted to reiterate my commitment to ‘add to’ and not just ‘take from’ this group. You are all doing a fabulous job. NoMatterWhat |
| ||
|
Thanks for the encouragement NMW. I do the best I can, but I wish I was younger and stronger. Just now as I'm trying to type this, he called me because he missed the chair he was trying to sit on and I tried to push the chair under him but I couldn't. Good thing son was able to come up to the office right away and help. Also just this morning he fell in the hallway upstairs while I was in the basement folding clothes and I didn't hear him calling me. Again son had to come over and help him up. Have any of you heard of neuophsychology assessment? Apparently it takes about four hrs, but they put the PWP though a series of tests to ascertain which parts of the brain are most affected by the PD. His neurologist has never mention this or any other treatment other than meds. |
| ||
|
Thinking of you all. I stopped mom's Memantine a week or so ago, and her Parkinson's improved (walking, etc), but her memory/hallucinations got a little worse again. Today she was seeing men in our field digging holes. I told her no one was there, and she didn't even have her glasses on and (I'm pretty sure) she can't see anything that far away without her glasses. She argued with me some, but finally dropped it. ... We got a new caregiver last week. She's more than twice the age of the last one, more responsible, on time, works harder, does more, etc., so that is lifting some stress off me. ... We see her neurologist in almost 3 weeks I think. I'm looking forward to Summer break from school, and hoping it doesn't just get flooded with more caregiving anyway. I'm sure the doctor will want to try another (3rd) dementia pill, and maybe a new program or two for the DBS over the summer, and so far everything new we've tried for quite a while has just made things worse for a few weeks. ... We saw her urologist on Monday, and he was talking about "quality of life", etc. Maybe I'm selfish, but every time a doctor brings up "quality of life", I wonder why no one cares about MY quality of life? But of course, I'm not their patient. She is. (Last week we saw her family doctor, and she complained about her throat hurting--as she has for 20 years or more--and he said it looked fine, as usual, and maybe get a humidifier for her bedroom at night if her throat is dry. Then he looked at me and said, "As if Chad doesn't have enough to do already." That actually made me feel pretty good--just the acknowledgement that I exist as a human, you know? Eight or nine years ago that doctor had a sub, and mom gave all her common complaints that always go away when her Sinemet would kick in, and that sub doctor was making plans to send us all over town for blood tests, etc. When I looked annoyed, she asked me what was wrong, and I said that mom sends me in circles at home all the time, and now she's sending me in circles everywhere else also. The doctor said we should at least get this one test...and, of course, it came back negative.) |