Hello! Being that there are several caregivers on this site, I'm hoping that you will share with me your tools and resources for dealing with the stresses and restrictions involved in this responsibility. My apologies for the length this post is probably going to be! I have been caring for my mother, 81, full time for the past 3 years since her stroke, and part-time for the last 10 years while she has been in ill health. She converted my basement into an apartment for herself so I could more easily assist her, and she lived there for 6 years, fairly independently, until a few months after her stroke. We moved her into my home 2 years ago when I broke my ankle and couldn't navigate the stairs to care for her in her apartment. She's been here ever since, and we rent out the apartment. At any rate, she is mobile with a walker, able to feed herself, take care of basic hygiene with bathing assistance but needs a wheelchair outside of the home. She has a delightfully pleasing demeanor, but needs constant supervision and guidance. It's like having a toddler over whom you have no control, who is into everything, always wanting to "help", hides things, moves things, rearranges things, makes messes, does inexplainable things...you get the idea. The biggest challenges are her significant dementia and many cardiac and circulatory problems. Most recently she experienced a health decline from unexplained high fevers, bottomed out BP, resulting in delirium and psychosis, which are now controlled with Zyprexa. We're all surprised that she survived that episode, but she's a tough bird, so we're grateful to still have her with us for a while longer. The crux of the problem is that I haven't worked in 3 years so that I could keep her home with me. I won't subject her to the negligence and potential abuse that is so prevalent in many nursing homes (speaking from experience). The arrangement has worked fairly well, except that I am doing this alone (I'm 47, divorced, no children, but several pets), with minimal assitance from family members, as they all live in other cities. One sister visits every couple of months to help out for a day or two. The only respite I get is 4 hours a week through a state senior's program, and no financial assistance. The strain is taking a toll on my physical and emotional health, and surplus finances are now getting low, so I'm desperate for suggestions on what other respite resources might be available that I've not discovered. I need to go back to work at least part-time, just to meet extraneous expenses (auto repairs, home repairs, etc.) Keep in mind that a nursing home is not an option as long as I can safely care for her at home. My siblings are not financially supportive, as we have had some conflict about my resolve to keep our mother out of a nursing home, and some resentment that she invested so much money into my house for an apartment for herself. They have the delusional impressions that I simply do not want to work anymore(going back to work would be a vacation compared to caregiving!!) and that I will benefit financially more than they from the estate -- which is a ludricous thought, at best. Back to the subject ast hand....does anyone anywhere have any suggestions on where to find additional, low or no-cost respite care that will allow me to resume contributing to the household finances? Hiring private sitters is not feasible, as that would cost more than I would make, even at a fulltime job. It might help to know that we live in a relatively small town an hour away from a major city. That is complicating the problem. Moving is not an option, either; not only due to the expense involved and the fact that a change in locations would be unmanageably stressful for my mother, but because I also have an 87-year-old aunt (in relatively good health, but blind in one eye, and limited sight in her other) who has no other family and depends on me for many things. I won't abandon her and she is highly resistant to the idea of moving. The other side of the coin is that my aunt is our emergency sitter -- she helps when I have to leave the house for things like my medical appts. that fall on a day the respite aide isn't here. At 87, I don't ask her to sit very often or for very long. Sorry to sound so whiney! I'm really not, but I'm in a bit of a pickle I can't see a way out of. I would appreciate any insight, information, suggestions...anything and everything is welcome! Many thanks in advance, and God Bless all of you who commit yourselves to making the end of other's lives the best they can be!
The following user gives a hug of support to jbj117: Sarahbells (02-20-2011)
This is a terrible situation for you. You have my complete sympathy.
On reading through your message it seems you conclude, "is not an option" too often. That is, urgent times call for urgent measures. Sometimes we Must move or get a job; we have no other choice. My father was a full time caregiver for mom in his eighties. He had visiting nurses come over for a few hours several days a week and he lived ten miles from town. It DID take away from his previously good health but mother still lived for over two more years and he lived for four more. He, like you, did all he possibly could to avoid putting mom in a nursing home. One morning he couldn't lift her from her bed so he called an abulance and she was placed in a home.
Did you know that, after a hospitalization, Medicare pays for a nursing home for awhile? They weren't eligible for Medicaid so they paid the full fee until they passed away, both in nursing homes.
So my only advice for you is to realize that you might have to, be forced to, use one of your options.
Penniless people are in nursing homes all over this country. Doesn't your health , mental and physical, mean anything to you? Caring for an aging mother full time is dangerous to your health; she needs you. You owe it to her to preserve your strength. Did she ever place you with a sitter when you were little? Whether or not she did or didn't I think you should either move and/or put her in a nursing home. We have to do what we have to do. My father was totally devoted to mom but realized she needed him so he did what he hated doing. She continued having strokes so he wouldn't have been able to continue caring for her at home anyway since they made her paralyzed on one side and incontinent.
I hope I've offered some ideas into partial solutions for you. Few people these days do what you're doing. As you're finding out from your relatives, your self imposed job often comes with absolutely no gratitude or support.
I won't wish you luck; I'll wish you make a drastic decision that helps you tremendously. SG
This is a terrible situation for you. You have my complete sympathy.
On reading through your message it seems you conclude, "is not an option" too often. That is, urgent times call for urgent measures. Sometimes we Must move or get a job; we have no other choice. My father was a full time caregiver for mom in his eighties. He had visiting nurses come over for a few hours several days a week and he lived ten miles from town. It DID take away from his previously good health but mother still lived for over two more years and he lived for four more. He, like you, did all he possibly could to avoid putting mom in a nursing home. One morning he couldn't lift her from her bed so he called an abulance and she was placed in a home.
Did you know that, after a hospitalization, Medicare pays for a nursing home for awhile? They weren't eligible for Medicaid so they paid the full fee until they passed away, both in nursing homes.
So my only advice for you is to realize that you might have to, be forced to, use one of your options.
Penniless people are in nursing homes all over this country. Doesn't your health , mental and physical, mean anything to you? Caring for an aging mother full time is dangerous to your health; she needs you. You owe it to her to preserve your strength. Did she ever place you with a sitter when you were little? Whether or not she did or didn't I think you should either move and/or put her in a nursing home. We have to do what we have to do. My father was totally devoted to mom but realized she needed him so he did what he hated doing. She continued having strokes so he wouldn't have been able to continue caring for her at home anyway since they made her paralyzed on one side and incontinent.
I hope I've offered some ideas into partial solutions for you. Few people these days do what you're doing. As you're finding out from your relatives, your self imposed job often comes with absolutely no gratitude or support.
I won't wish you luck; I'll wish you make a drastic decision that helps you tremendously. SG
You are experiencing caregiver burnout. I have been there, done that and reaped poor health as a result. I took care of my m-i-l in my home until I almost went over the edge and was forced to seek alternative care for her. Although I had my husband around, he did not assume any responsibility for his mother's care, it was all up to me to take care of her and my large family. Only respite I had was when we had a person come in for 4 hrs. once a week to sit. I then would leave the house and go shopping. No I could not afford to buy things but in order to make shopping more pleasurable I decided to look for 2 plates, 2 cups/saucers at real cheap prices for a collection to use during retirement years. In other words it was my therapy.
Does your town have an "adult daycare"? If so, give that a try and then you go back to work. Some churches have senior programs for the elderly.
I gave my m-i-l the best of care but I ended up in very poor health as a result.
SG, thank you for taking the time to reply to my post. I understand your intent and appreciate your iput. However, there are factors involved in my decision to not place my mother in a nursing home that extend beyond finances. Since I did not explain that in my previous post,it's understandable that you would assume it was primarily financially-based. My grandmother was institutionalized for almost 60 years with paranoid-schizophrenia, and my mother had to witness all those years of her mother's very unpleasant experiences in a variety of facilities. My mother's biggest fear in life is being instituionalized, especially since she has dementia and, most recently, medically controlled psychosis. Placing her in a nursing home would be signing her death sentence. Not only would she not survive long in such an environment, it would destroy what little security, comfort and peace she has in these last days of her life. I refuse to live with that on my conscience, regardless of the consequences, financial or otherwise. She deserves the same level of love that she gave her family. In addition, I strongly feel it is the responsibility of families to care for each other, as opposed to relegating that responsibilty to others, when at all possible. I do realize that it is not possible in every circumstance, but for us, it is. Turn the tables...suppose it were a case of a child with a disability for which others recommended institutionalizing so that the parents could continue leading a more "normal" life, so that it wouldn't be such an emotional or physical burden, or financial strain, on the family. I don't know about anyone else, but the idea would have been inconceivable to my parents, even if it had been a single-parent home. No, they would have pursued every other option possible to allow them to care for that child at home, as long as it was not a health or safety detrement to the child. That's all I'm doing. In my previous post, I did clarify that I would keep her home with me as long as I could "safely" do so. Yes, it is a financial strain. Yes, it is restrictive. Yes, it is stressful. Yes, stress can take a toll on one's health -- that's why I'm reaching out to others...to find ways to cope with the stress so that it doesn't do unreversible damage to my health, to ask for creative ideas for easing the financial strain, and for suggestions on cost-efficient respite care to lessen the restrictions. However, should we not find solutions to any of the above, we will continue in our present situation, making whatever adjustments are necessary -- including moving to a smaller home if it comes to that. So, although I'm grateful for your perspective and time, I will continue my stance of opposition to a nursing home for as long as is humanly possible. You were right to not wish me luck, since what we need are suggestions on how to support our decision, regardless of whether others agree with, or understand, it or not. We each have to do what we feel is right and best for ourselves and those we love. The same choices do not work for everyone, which is the beauty of freedom of choice. Again, thank you for the time you invested in your reply and for the suggestions you felt would be helpful. Many blessings to you and your family. JB
Suggestion for dealing with caregiver stress? 
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