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Topic Job description help please. Go to previous topic Go to next topic Go to higher level

By tedybrs On 2010.06.28 08:11
I am new to the forum and hope I can learn and get some ideas from everyone. I am exhausted from caring for my husband 24/7. We have been married almost 31 years and he has had Parkinsons for about 23 years. I am venting, please allow me to. I am constantly picking up after him, picking him up when he falls, pulling him out of bed, cleaning up after his accidents, bathing him, changing him 4-5X aday. I am the driver, shopper, appointment maker, just to name a few things I do. Where do I draw the line? I am about to give up! It never bothered me, however now I just don't know what to do. Please help!!! Thanks so much!!!

By karolinakitty On 2010.06.28 09:24
tedybrs .. First i welcome you to the forum and vent all you want....
I'm sure after this long it is getting to you, it's only natural, especially if you have no help from family or friends.
There is help out there, it's just finding it and getting things moving. It's working on it in between everything else you do, that is the challenge. You don't give your ages, but i'll assume you, or at least he, has medicare. If you can call your local Dept of Aging, council on aging or any of those organizations they may be able to put you in touch with some help. Also at your neuro or docs office you can find out this info too. They can help evaluate your situation and see where they can help out. You may be eligible for an in home, pt caregiver, or something like that. It seems from what you say that an adult day care would be out of the question right now but check into that also. I'm sure others here have even more tips so stay with us and i hope you find the right answers.

By MJ-Camano On 2010.06.28 13:09
I was able to get some assistance thru our local Sr center, where they have a wonderful person who gave me lots of information on what was available to me. Our state (WA) has respite care for the caregiver - what a help. We all know what you are going thru and it is so important to take care of yourself!! It is hard to remember to put our needs on top of the list, but we must. I know, as I have been caring for my husband, taking over all the household tasks, plus working for 5years now. I do have alot of family support, but his is still overwhelming. My daughter came from out of state to help with her father for a couple of weeks; and I fell apart, she ended up extending her trip to 6 weeks. I was in the hospital twice - vertigo, heart problems, once home could only stay in bed and sleep. I'm still wondering if I have several things that just happened at the same time or if I was just able to let go of the stress and needed time to heal.

Anyway, I now know that we must take care of ourselves and find a balance between caregiving and having our own life (this is not easy, but necessary.)

By Emma On 2010.07.01 05:06
tedybrs, Welcome to the forum. You are not alone and we are here for you. We have all been where you are, or will be at some point so you have a lot of support here. If you have time go back and read through the old posts and you will see that you have many kindred spirits on this forum. Many of us come here to vent, to get help and learn.

You have been at this for a very long time, it's no wonder that you are stressed and exhausted. It is not humanly possible to keep this up without eventually getting some help. It sounds like you are providing care that is much like what I do for my husband so I have great empathy for you. I don't know if this will help but I'll tell you where I am at in my thinking/planning.

I feel right now that I am about at the limit of what I can do physically, mentally and emotionally. I know that I need to make some changes for my sake and my husband's sake. A while back I started taking an antidepressant. It's helped quite a bit to take the edge off for me. I am in the process of trying to get him into an adult daycare program for one day a week so that I can get away from the caregiving briefly and have time for me. I'm also trying to find someone to come into our home for another half day a week just as a companion and to make sure that he is safe. I want that person to be someone we know so that my husband feels more like he has a visitor than a babysitter. Even as I am working on these things I know in the back of my mind that he might need too much care for either of these options to work. Just recently, for the first time since he was diagnosed, I have thought about assisted living or nursing care. When he's having a good day I think no, it's not time yet. When he's having a bad day I think I can't do this much longer. I have decided to give it six months and reevaluate at that point. In the meantime I plan to check out facilities in our area just so that I know what's out there.

It's so hard to balance taking care of ourselves and taking care of our loved one. Simple things become huge problems. Right now as I am writing this I am sitting here with a rash that is creeping over my body. I think it's Hives but I'm not sure. I also feel an asthma attack coming on. So what do I do? In a different life I would have just headed out to the drugstore to get some Benadryl or to Urgent Care but it's 5:00 in the morning and I can't just leave my husband here. That's what I mean about simple things become major problems.

Please stay with us. We want to help.

By lurkingforacure On 2010.07.01 11:47
Our job description doesn't exist, we wear every hat every day. If you have little kids like we do, you get all of those hats, too.

I can't imagine being where so many here are. I can barely keep up with what I have on my plate now. It's so heartening and encouraging to read your posts, because I think, wow, if they can do it, so can I. That means a lot, on those days when I doubt my abilities, patience, and strength (emotional, mainly). I have a lot of those days.

So vent away, I think it's healthy for us, both to write a venting post, and to read them, because they validate what we know and feel, and because they help us not to feel so alone on the PD journey.

By parkinit On 2010.07.02 23:02
I cannot imagine being at this as long as you have. I applaud your tenacity and devotion. It is anticipated and expected with a loved one. You do deserve a break. Take time for yourself. This is important.

Don't feel guilty for venting; it help keeps you sane.

By annieb5767 On 2010.07.29 11:21
To emma-I understand completely. I have been hospitalized 2 times for fluid retention. My legs have been swollen for the past week -but, I can't leave him to take care of me. I am searching now for some help with care giving. I've got to look after myself better.

By Emma On 2010.07.29 17:39
annieb5767, You are right, you do need to look after yourself. It's so hard to do but you have to. Just in the past few weeks I have finally started having someone come in twice a week for the afternnon so that I can get out. It has made a world of difference. I am much less stressed, I feel happier and I'm sleeping better. Not to mention that I am getting things done for me. Simple things like getting my haircut, going to the doctor, having lunch with friends. It really is a new lease on life and I wish I had done it a long time ago. Please take this step for yourself, you need it and deserve it.

By shakingpt On 2010.07.29 21:50
I hope you take Emma's recommendations. You cannot do it all yourself. You need a couple of days a week to get out and do what you want to do to keep your own sanity.

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