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Read post. Trust me I get It. Please don't....find that cLiff on your screen saves and jump! LOL! Just making like of what i know is a tuff situation. Seriously at some point our husband has to open his mouth and speak up for you. Its the only thing that will stop it and keep you off "SNAPPED" LOL!
All the best you.
This is going to be blunt.
Understand, I am not saying this to be critical of you. There are all kinds of people with all kinds of capabilities and it takes a certain kind of person to do what has been handed to you to do.
Not only do they have to have a special kind of disposition, they must be totally willing to take on this responsibility.
Rather than taking her because you really wanted to, it sounds more like you were the 'last resort'.
After only a month you've reached your limit and that is added to already resenting what you've had to do to your home to accommodate her. It's not going to get easier, it's only going to get harder.
That is not going to make it good for you or for her. Resentful and unwilling caregiving is a recipe for disaster.
Find a facility for her and do it without guilt.
Since so many posters here keep mentioning money, I will make this comment.
If you are going to "charge rent" or "be paid for your caregiving" - those are sources of income and you should be declaring them as such.
If you have POA and use your MIL's money to pay for her groceries, her cable bill, etc.. that's not income that's her paying for her expenses.
But if you're charging her to live in your home - you just became a landlord, and if you're charging her to take her to her appts, or make her dinner - you just became an employee.
If the caregiver needs the income, I think that's a perfectly reasonable way to go - but if that's the case, it should be done legally (as income) - because then it is also a tax deduction (for health care, which aides providing assistance with activities of daily living are) for the elder. Also in a spend-down situation then that money has been formally accounted for as opposed to just "she gave us $10K" (which would then count against her).
As far as not showering - there are some classic symptoms of Alzheimers which lead to this aversion. Google it - there should be a good bit of information. I don't recall if its the sensation of the water, or depth perception - but they are not being stubborn, they have reasons for their aversion. Make alternative cleansing options availalbe (sitting and using a wash cloth, etc..), but don't blame the person suffering from the disease and don't drive yourself crazy trying to fight something you can't win.
It seems as though you and your husband need to talk about what is realistic and what your individual and shared (if any) goals are. If caring for his mother is more important to him than his marriage, you need to know that. If not caring for his mother is more important to you - he needs to know that. As with all things - communiation is key.
I'll add my voice to those who are advising you to talk to your husband about finding a place for her to live. You'll still have to do all the paperwork and business for her, but you won't be as resentful if she's not in your house. Also, do not consult with other relatives, or listen to anything negative they have to say. If the responsibility to care for her has fallen to you, you get to make the calls without being second-guessed. Get in the habit of announcing what you've decided to do--never ask them for input.
Also, when you get the POA to take care of her business, see about getting a POA for health care decisions as well. And see if she wants to sign a directive to physicians to outline what type of care she wants if she has a stroke or other medical emergency.
If you move her to a facility, you'll be able to visit and be pleasant with her because you won't be living with her and providing full time care.
There are a lot of resources and information out there, if you can find the time to access them.
Also, about the not bathing and other odd things she seems to be doing, it's all part of the disease process. My mother was going 3 weeks without bathing or washing her hair. And her house was an absolute mess. With her, I don't think she could hold the idea of doing something in her head long enough to carry it out.
Take care of yourself, do the best you can and don't look back.
Alzheimer's is such a devastating disease. I wouldn't wish it on my worst enemy.
At some point they don't recognize loved ones, and may fear them. They lose the ability to distinguish what is safe to eat and what isn't. My MIL tried to sprinkle sink cleaner on her food thinking it was salt. So we had to lock the cabinets.
They forget what every day objects are and what their use is.
At one point my MIL said she wanted to wash her hands, went over to the stove, turned the burner on and started to put her hand over the flame. Fortunately, I saw her and guided her over to the sink. After that we had to put a lock on the stove knobs so she couldn't turn them.
She'd get up in the middle of the night thinking it was daytime and wouldn't go back to sleep. I had to put a sliding door lock on the outside of the sliding door so she wouldn't go outside when we were asleep. We had keyed dead bolts and alarms on all the outside doors. We literally had to imprison her and ourselves to keep her safe.
She'd go to the bathroom and flush her undies down the toilet, or I'd find feces smeared all over the sink. I feel terrible for even saying that because my MIL was such a classy, lovely lady and she would have been so humiliated if she had known what she was doing. After that we couldn't let her go to the bathroom alone.
Then she forgot how to use the toilet and had to wear adult diapers.
It's so emotionally difficult on caregivers who knew the person before the disease took over. On the one hand you don't want to take away their independence or their privacy, but on the other hand, you have no choice.
It's just so incredibly sad to see a loved one decline like that and forget so much, and forget people who loved her. The one thing that kept me going was that she always held my hand. She did it before her diagnosis and during the worst of it. I treasure those moments because that's what I choose to remember about her. That and the cookies she was always trying to feed me.
Then my MIL forgot how to walk. We had to get her a wheel chair, and had to install a wheel chair ramp. Then she forgot how to stand so she had to be lifted into the wheel chair and out of bed in the morning.
We had to hire someone to come in and bathe her and help care for her for a few hours a day. I think we went through 9 or 10 home care workers before we found someone who could be trusted, and did what they were supposed to do.
Towards the end my MIL forgot how to swallow and had to have a feeding tube.
Other health issues came up and she went into the hospital and then into hospice care. Mostly she slept but there were times she'd wake up and I could see the fear in her eyes. I was the one reaching for her hand now. She didn't live long after going into hospice.
That is the reality of Alzheimer's disease.
OP, I tell you all that because I want you to see what your life is going to be like if you don't get help from your husband, his siblings, or get her placed in a facility where she can get the care she needs. You resent what you're doing now and I completely understand that, but it's only going to get worse for you and for her.
If you can, have a living will in place so her health care wishes are written down because at some point somebody is going to have to make tough decisions on her care or stopping care and it's not a decision you want the responsibility of making.
I have a very hard time with your suggestion that someone should make money off of caring for relatives. ... There should be no rent. Just what it costs for food and increased water for showers and laundry, and electricity, etc. It's not that expensive to have an extra person under your roof. It sickens me that you are suggesting the family charge for their time and effort. This is the OP's mother-in-law, not a stranger.
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Quote:
Originally Posted by GotHereQuickAsICould
Take care of a woman with dementia who won't bathe and needs constant supervision and care for $200/month? I don't care if she is your MIL, that's asking a lot.
Why should the MIL's pension and SS check be put in savings, later to be spent to meet the Medicaid spend down requirements?
Hopes, I am wondering if your lack of response means that you have changed your mind on this issue.
I am also wondering if you are caring for an elderly relative with dementia and are basing your views on personal experience.
It is absolutely beyond my imagining that anyone on the C-D Caregiver Forum could put themselves in a position of making such hard-line pronouncement about what a family SHOULD or SHOULD NOT do related to the finances of a loved one who is in the care of a family member. Every caregiver here has different financial circumstances as does every person being GIVEN care. How is it up to you to decide what anyone else's time or effort is worth if the family has come to an agreement of how these finances should be organized? For every one case you know of where an elder in need is taken advantage of, I'm sure I can find you a caregiver who is being taken advantage of by a parent in need of care or by siblings who could help but refuse to participate.
I wasn't allowed to rep you again so I'll quote this part of your post and say: You go, Jukesgrrl!!
If my mother had any money I'd expect her to pay for all the household help and other services I provide for her. Why? Because the only reason I'm doing any of it is that she can't afford to pay anyone else. This work is not rewarding or fulfilling for me. I'm not especially gifted at any of these tasks. It isn't how I'd choose to spend my time or my energy. I'm just a source of free labor that allows someone to continue living the "independent" life they're no longer able to support by their own efforts. Meanwhile I'm prevented from pursuing my own goals and interests (whether money-making or not) because I need to be here every day to take care of things for Mom. If it were possible to get some compensation for this, I'd want it. I don't blame anyone else for feeling the same way.
It is absolutely beyond my imagining that anyone on the C-D Caregiver Forum could put themselves in a position of making such hard-line pronouncement about what a family SHOULD or SHOULD NOT do related to the finances of a loved one who is in the care of a family member. Every caregiver here has different financial circumstances as does every person being GIVEN care. How is it up to you to decide what anyone else's time or effort is worth if the family has come to an agreement of how these finances should be organized? For every one case you know of where an elder in need is taken advantage of, I'm sure I can find you a caregiver who is being taken advantage of by a parent in need of care or by siblings who could help but refuse to participate.
"There should be no rent?" Never? What if the patient is well-to-do and the person they want care from is financially needy? Are you going to step in saying, "Hold up. You, daughter-in-law, should be happy to give short shrift to your husband, your children, your friends, and your means of making a living to provide a home, meals, medical care, transportation, and entertainment to a mother-in-law who is being ignored by her own children. And don't expect any remuneration!" In a just world, every family member should be happy to participate equally in the care needed by an elder. Perhaps you live in such a fantasy land. But where I live, those cases are the exception rather than the rule.
We are all unique here. We are trying to do what's right. Some of us have help and some of us are alone. But there's no reason people should sacrifice just for the sake of sacrificing. That's not mentally or physically healthy — for the helper or the helped.
Well said Jukesgrrl.
The problem I have noticed with the Caregiving board(and it is an odd one) is there are people who have never done actual caregiving themselves who post on the board.
They have a lot to say, sometimes they know someone who does caregiving or they have an image in their mind of what caregiving is like, or how they THINK they would handle the situation.
But they have no direct "hands on" experience.
Sorry, caregiving is one of those situations(like the loss of a child, or being a soldier at war) where if you haven't done it yourself, you have no clue what it is like. It doesn't mean there aren't people who may have an idea of how hard it can be(there are), but again unless you have been "in the trenches" you don't really know.
And quite frankly, shouldn't be commenting on the subject. Because they have no experience in the situation.
Hopes, I am wondering if your lack of response means that you have changed your mind on this issue.
I am also wondering if you are caring for an elderly relative with dementia and are basing your views on personal experience.
My lack of response has to do with not spending much time in this particular forum and throwing my hands up in the air over people who want to profit from the disabled or elderly. I fully understand and agree that people should take payment when they have to give up employment to care for someone. That and other similar examples given are not for profit but compensation for expenses or lost income.
But I don't have anything to say to the people who think they should be compensated for mere inconvenience, hassle, etc. IMO money doesn't make up for how difficult it is so it's sort of illogical to want to be paid. From what I see, they are still inconvenienced, stressed, and upset. Money doesn't change that because they're still complaining even when they are compensated for the hassle.
We have three family members with disabilities. One is physical disabilities. One is early onset Alzheimer's. One is dementia resulting from years of epilepsy. All three are my husband's siblings. He comes from a large family. Nobody is taking money from them. Quite the opposite. We are all financially supporting the three of them. We have financially supported the one with epilepsy since I married my husband over 20 years ago. This is a family that lost their parents when my husband was 19 years old and his youngest sister was 12. All of the older siblings supported the younger siblings and put every single one of them through college, and a house has been provided to the one with epilepsy for over 3-1/2 decades. Think about that. The one with early onset Alzheimer's and the one with physical disabilities put my husband and his younger siblings through college.
Until recently, we maintained two residences in two cities for these siblings. When Alzheimer's and dementia hit, we did have them in our homes (rotating) until they were stabilized. The one with early onset Alzheimer's ultimately needed to be placed in a home for Alzheimer's patients. The one with dementia is now living with the one who has physical disabilities. One or the other or both will ultimately end up back with us again someday.
So, yes, I'm basing my opinion on personal experience of caring for relatives with dementia. Like the OP, these are my in-laws, not my family. I have never once complained about the money it costs for us to care for my husband's family. I'm in awe of his family and their lifelong commitment to each another. It hasn't taken away from us at all. It has enriched our lives and provided an excellent example for our children.
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