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s10sleeper Posted September 2013

Being caregiver for dad is destroying my body.

I have been helping my father for over 8 years, as his diabetes started taking its toll on him. At the time, I was making good money and we lived well. I knew he was going to get worse, but I was willing to make the sacrifice as he made sacrifices for me too when I was younger.

My epilepsy came back in 2009, at the same time his health was getting worse and so I had to have brain surgery. At the same time, my license was revoked due to the seizures, and I lost my job as I was too much of an undue burden. I went on SSDI, making only 1/4 of what I was.

The big problem I have had is that, even though I had no license, I have to run all errands and handle all of the finances as my father put me as DPOA, financially and medically. All of the walking has resorted in a major overuse injury in my foot and I had to see an orthopedic foot specialist, where they found over 20 stress fractures. They tried a gel pad as I refused a cast due to the demands on me, it did not work, so I was put in a walking boot. The fractures healed slowly, as 2 would heal and 1 would develop and eventually they were better, but they came right back. I was told the next step was to fuse the toe and would be permanently in a special shoe. I have begged and pleaded with my siblings to help out somehow, even if one of them came out once a week, meaning each one came out every 3 weeks to give me some relief and to get a ride to get groceries, but they never do. My father is even worse now and wheelchair bound for life so the burden increased tenfold. It takes all I have to prevent from yelling but it is not his fault when he needs my help. I am in pain and have been having a breakdown and do not know what to do, I have even seeing a psych for help but it only helps a little and as soon as I walk in the house I am severely depressed.

vstefans Oct 2013
OK. Multiple stress fractures, pain and presumably seziure meds...have you had your vitamin D level checked? Your bone densitometry? I bet you have very little time to properly take care of yourself but you've absolutely got to. If the sibs are dyscompassionate a-holes who will not even cover while you go to the doctor - let alone get surgery- then finding respite help or calling it quits are the only decent options. Back in PA the Ursulines were the go to group in this situation when you don't have a lot of money. Now this will sound crazy but I'm serious. Bike or adult trike rather than walk. You use the muscles but without so much weight on the foot. Get an exercise bike for at home too. Foot surgery and special shoes aren't the end of the world either, though I'll be the fist to admit I'd hate to permanently part with my colorful flat and high heel collection :-). There may be better answers for pain too depending on if it is fractures themselves versus nerve pain. (It sounds like those fractures came as a surprise and you were probably ignoring A LOT of pain...)You deserve the kind of good care you are trying to make sure your father has, that's for sure. And if you are so depressed or habitualy self-sacrificing that you don't feel you deserve it, you *need* it, if you are going to even be able to help provide care at all!

BS0213 Oct 2013
Yes, I've missed out on so much of MY family I have a mother to. And it's basically ruined because I don't ever think I can be a caregiver again and my mother said she would never put me through the things I've had to go thru and do.

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skinonna Oct 2013
So you are being bullied and abused and are now suffering a physical decline? Are there no nursing homes where you live? Elderly despots seems to reign in so many of these posts. Do you feel you are not entitled to a life?

BS0213 Oct 2013
It's been a while for me here, hello again. I'm writing about my health and well being. I was my MILs caregiver and still am pt on occasion to feed her since this time I've had 3 spinal surgeries and having my 4th nov, 1st. I can't even remember being pain free! 3 Drs. I've seen have asked if I've been in a bad accident. I have arthritis and of course major spinal issues but yet I've still had to care for my MIL. Last year I finally was able to get a ft caregiver during the day but on the days there out or when my husband works on sat. I have to feed her I haven't attempted to chg my MIL because its just to much. And at this point I'm sorry to say I even hate going into her room she's 90 yrs old has dementia and is a maximum assist. I'm tired of cleaning and smelling poop everyday sometimes a few times a day! She has to be on a soft diet because she can no longer chew. It sounds terrible the way I feel but I'm just so tired, mentally, physically. My MIL has daughters 2 of which that live far 1 7 mins away that doesn't do jack! I've been able to rest this past year but still had to help the caregivers because my MIL gets been combative and difficult, yes she's been put on meds but she's on as much as the dr. Can give her. Dr. Says she's just existing nothing we can do but just comfort care. My husband wants her home. He usually takes over as soon as he gets home but last night he told me he's getting another job much farther from home (he was able to come home to chg n feed her) so if my caregiver is out not sure what he's going to expect me to do? I cannot go back to caregiving again not while I'm recovering. My last surgeries I never had a chance because I was nominated of her primary caregiver, my fault for even thinking to do it! Then this family took me for granted and now it's only been my husband and I. So I'm really starting to worry when he starts this new job, I'm happy for him he will be making more money but he's not really thinking about his moms care when and if our regular caregiver is out? Thanks for being her to listen everyone here have been very helpful.

195Austin Sep 2013
s10 there is no way you can continue to care for him -he needs to be placed and since he does not acknowledge this -he can not make the decision-call your local office of the aging and have a social worker come to the house or whoever they send to do an evaluation-you cannot drive so how can you take him to appointments etc or do the shopping-get your doc involved you need help yesterday-if he does not get that he either has dementia or is very selfish-get someone to listen to you and to be on your side-my husband thought he could treat me like shit and my counselor said I was waiting for someone to rescue me and it was not going to happen-I struggled with his care then rescued myself by deciding to have him placed-he said no but he had said no to adult daycare and I told him it was no longer his decision to make.

pennyearner777 Sep 2013
As far as the walking I would strongly suggest finding a company or business that will pick you and your father up together. There are more and more companies that are in operation that will pick up someone in a wheel chair and take them and their chaperone with them. That way you are not leaving your father to care for himself and you are still able to get errands ran. I am taking my 86 yr. old wheelchair bound grandfather in law to the Dr. today. There is no way that I can walk him there. Most places will charge you about $3 each way. It may sound like a lot, but it is a lot less than paying for a dr. to take care of your foot. See what your area has as far as mobility. I am sure that you can find something close.

JessieBelle Sep 2013
Something I wondered is if there are ways you could make it easier on yourself. I manage all the finances and errands for my mother and myself, but don't really do a lot of walking (except when I want to). I do online banking and all of her checks are automatically deposited to her account. Her pharmacy delivers. I pay bills online or through the mail. Really, I do most things online. The only real running I have to do is to go to the grocery store a couple of times a week, take her to church, and take her out to eat.

Housework and yard work do take some effort, but I've come to accept that the house doesn't need to be as clean as I would like. And anything green in the yard I call grass, so I don't have to weed so much. There are all kinds of ways that you can make things easier on yourself if your father continues to stay there with you.

orangeblossom Sep 2013
I would suggest you contact your local Area on Aging and see if you can get a Social Worker to come out and review the medical, health and living situation of you and your Dad. Someone like that could give you resources and help you coordinate a plan of care. I think the next logical step would be to contact your local Medicaid office and ask for someone to come out to the house as you have no transportation. It's a hassle with the financial 'inquest', but it sounds like your father could get both Medicare and Medicaid. You should be able to get financial and medical assistance for him - in the home if you wish, or you could have him placed in a facility. Medicare covers "X" # of days, then Medicaid kicks in for the rest. Also check out availibility of VA benefits and services if your Dad was in the military (they have very informative website) Personally, I would place your Dad in a facility. You have absolutely NOTHING to feel guilty about - so don't let anyone lay that on you - you are just cowering under the emotional pressure. Don't fall for it. It's your home, your life, your rules, no exceptions. You are in no shape to take care of him, and you need to take care of your own health, first and foremost. I wouldn't give a tinker's damn about his or your siblings opinions or grudges. If they are that cold-hearted you are better off without them. Have they stepped up to the plate or considered your feelings or physical condition? They obviously don't care what happens to either one of you. Truly, I believe you would be doing your father the kindest service (even if he does not see it that way) by getting him the professional care he needs, and then also seeing to your own health improvement and quality of life. Hang in there - we want to see YOU back on your feet - literally!

s10sleeper Sep 2013
I have thought about assisted living, however, I know the way that my father is, being extremely stubborn and short tempered, the moment I mention it he will be yelling and cussing at me. Then he will start making threats at me and then trying a guilt trip on me. Plus the way he and his siblings are, once a member of any family makes them mad, they hold a grudge for life.

The other problem is that medicare will not cover much, and he just got out of swing bed care due to 2 major diabetic ulcers on his foot, and the only reason he left the hospital was because medicare would not cover any more.

Eyerishlass Sep 2013
You need some respite care, ASAP. Not in 3 weeks, not in a month, NOW. There are assisted living facilities that offer respite care and I urge you to look into that.

I could feel your desperation as I read your post. Have you considered placing your dad in a nursing home? Sometimes it comes down to them or us. If it's down to either your dad or you who are you going to save?

I'm so sorry that your siblings won't help. Forget about them, you can't depend on them. I know that feeling of walking in the house and having the life sucked out of you. I want you to find a temporary respite as soon as you possibly can. Google 'temporary respite', then your city and state and go from there. And please, please come back here and let us know how you're doing.

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