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I'm a VNA nurse. I have a patient who's wife has been diagnosed with dementia. She is "clear enough" to state she does ADLs and IADLs, but the husband and other family state she does not.

This is causing great stress to the husband (my patient) because he feels he cannot care for her (clean, cook, laundry, shop) but she refuses to have paid help (which they can afford). She also refuses to have their children help (which, they cannot do on a daily basis anyway).

Not only is she not aware that she is faltering, she is adament against any of their suggestions that she has any problems. She insists that she cooks and cleans and does rountine personal hygeine every day, even though she doesn't.

I"ve given this patient and his children information about local in-home services and about COA help. But the real issue is that they do not know how to "prove" to this woman that she needs help and that she is not doing the tasks she claims she is?

I thought maybe they somehow videotape her daily rountine showing her that it's her husband trying to clean, reheat frozen meals (which are not healthy for him), etc.

She has also become a recluse and will not leave the house with anyone. He has made doctor and dental appointments for her, but she cancels them and refuses to reschedule.

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I agree with Jeannegibbs and several others, too. Logic and facts won't work with this woman since her reality is her reality. However, taking care of her husband with help doing chores so she has more time for the "important things" may help her make the decision to accept help for his sake. If it's her decision then it's okay. Naturally, this help will be there for both of them.

If this doesn't work, the suggestion that you call in social services may be the only answer. Your patient needs care. However, I would try Jeanne's suggestion first as it may give them more time as a family.

Good luck. You are facing the dilemma that is Alzheimer's. The clash of our world and theirs. It's often an agonizing journey.
Carol
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Bless you for trying to help out in this difficult situation.

Wife has dementia. That means she is losing or has lost her ability to reason. Reasoning with her is not going to convince her. Showing her videotapes is not going to convince her. She is living more and more in her own reality. To reach her you are going to have to try to meet her where she is, not bring her to where you are.

Apparently her husband is sick enough to need a visiting nurse. He needs extra attention and care at this time, and as his wife she is the best person to provide this to him, explain to her. So that she can spend extra time with him, playing cards, or watching television, or going for walks or whatever they can do together, you are going to help arrange for someone else to do routine tasks. It doesn't matter whether she cleans the toilets or someone else does, but it does matter that she spends extra time with her husband. No one else can take that over for her.

At least that is one approach to take.

Another might be that it is time for her to "retire" from some of the household work she has been doing. She has earned it and she deserves it.

Once you stop trying to convince her she can't do ADLs and start thinking of creative ways to make her feel good about having help, you may come up with some wonderful approaches yourself.

Again, thank you for trying to figure out how you can help. Often an outsider can be more objective and more creative than family. I wish you every success.

Since we learn from each other, I hope you will keep us updated as to what you try and what seems to work.
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As a nurse myself I can certainly relate to your situation and I agree completely with what jeannegibbs said. This woman isn't rational so she can't be expected to behave and react like a rational person. Videotaping her would be a waste of time and would probably just muddy the waters.

From what you wrote it sounds like in-home help is necessary however since the husband is your patient and he would be the one with the extra help the wife might not be agreeable to this. She may, in fact, make it very difficult for her husband to have the help he needs.

There's no need to "prove" to this gal that they need help. Again, she's not rational. The trick is getting help in there and the wife not interfering. jeannegibbs had some great suggestions on how to soften up the wife but in the end her children may need to make some tough choices about the care of their parents. I can't see the husband getting the care he needs while the wife is struggling with dementia and by no fault of her own making things more difficult than they already are.

But if this couple can both get the care they need and stay at home I'd like to know how that is done so come back and let us know.
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This is the same situation I faced with my parents. Finally, my father said he couldn't do it alone. Both my mother and father always said that they did not want to put their children (five of us) through what they went through with their mothers, who had also died of Dementia and it's complications. However, I and my siblings could not be with them 24/7, which is what my mother, and eventually my father, needed. My father was admantly against assisted living. "Too expensive and a waste of money!" "Your mother will not be in one of those while I am walking this earth!" "What would extra help do!?!" Well, after four visits to the emergency room, with family driving 10 to 40 miles to see him and be with Mom and transport her to our homes for the duration of the hospital stay, he relented to in home help. By this time it was also clear that my mother did not do well being moved around and staying in places that were not her home, even if they were family. She wanted to be with him. Even my stubborn father saw this. He made sure we had the health and financial power of attorney and we took over spending the money. After all the upheaval, we spent the money he had frugally saved in order to stay out of an assisted living facility, initially on in-home care. For the first two weeks it was just 4 hours a day, weekdays. In my opinion, too much to keep the house clean, but not enough to care for them. My father would send them home when he felt they had done enough. (This was unfair to the caregivers. I had many discussions explaining why this job would get much bigger in only a short amount of time. Thankfully, they liked my parents and stuck it out with us.)

Then came the day when I got the call. I can't leave your father alone, he needs 911, and you know your mom can't be left alone. He went to the hospital and I stayed with with mother at her house. I quit discussing the situation with my father and spent a large amount of his money hiring home health care help 24/7. He saved that money and lived frugally his whole life for just that circumstance and I am was well equipped to spend the money on my parents, because, alas, I did not inherit his frugal nature.

My father died about three months later, under hospice care, in their home, the way he wanted it. They continued to care for my mother until her financial advisor, and dear friend, told her the cost was excessive, and even the biggest nest egg couldn't last that long. Mother was moved into assisted living close to me. We improved and rented out their unsellable home. She was there about 10 months, fell and broke her hip. After two weeks declining in the hospital, she is steeply declining in the rehab facility.

This is what I, and my family, have learned from this experience. It may initally seem like "a waste of money" to pay to enter a step down retirement facility. However, if you wait too long, and your health is too poor, that option is reallly not open to you. My blessed, rational, mother-in-law took this step when my father-in-law was initially diagnosed with Alzheimer's. She is now living happily in their assisted living section. She is 95, is independent, has friends, and would not change her decision for the world. She is safe, happy, and no burden. It is a joy to drive 9 hours to see her and I know that no matter what happens she will be in good hands. On the other hand, we did what my parents wanted. It has been a burden to me and my family. We were willing to take the job on, thankfully my parents had the money, we only had to provide the very painful decisions.

If my father had known how much of a stressful situation it has become, I believe he would have picked the step down option, would have lived longer, and would not have spent his last three months worrying and stressing over "what will happen to my wife?"

Our goal throughout this learning experience was to keep our parents as independent, happy, and safe as possible. We have made mistakes, had some good results, and some bad. We probably would do the same thing again. In the end you only have a few choices as you begin to realize you can't go it alone. Give yourself and your family a break and make sure you have have made the decision to independently provide security for you and your spouse. Your patient and their family need a wake-up call before the decision is taken from their hands. If parents do not "want to be a burden", parents should make the painful decisions before it is out of their hands and thrust upon family and/or strangers. Parents, if you were foresighted enough to save that money for your care--use it so you and your family can enjoy what is left of your life, and have many happy memories. Trust me, leaving money to your children is not what children that love you want. They want you!
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You hit the nail on the head without knowing it: The REAL issue is her family.

Would you try to "prove" to a child they were too young to cross the street alone? Or that a vaccination is the way to go? Why would anyone need to CONVINCE her of anything?

In my opinion, one of the most important things caregivers have to learn is that it's their responsibility to do the right thing regardless of what the patient wants. Yes, it would be nice if they agreed. But, unfortunately, that's not always going to be the case.

This is a failure of family. Her husband doesn't have the courage to step up and do what's right -- satisfy his own needs -- unless he has his wife's approval. By your account, his wife is unrealistic and uncooperative. That doesn't mean that family is excused from doing the right thing.

Get social services involved with the family. It would be cruel not to do so.
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PS: It is likely that no one will ever be able to "prove" anything to someone with dementia. People with dementia rarely are capable of having anything proven to them. Their minds are affected, so trying to 'prove' to a demented patient that they are losing their faculties and do need help is, largely, a fool's errand.

You have to obtain a[pprpval of the non-demented husband to act for and on behalf od his failing wife for her own sake and safety.

What is needed is an intervention. It ought not to be too difficult to 'prove' her need by having her assessed by geriatric/dementia professionals.

It is a poor time to be hypersensitive to the feelings of someone that is losing ability to live safely but has no insight into her condition. It is unlikely that reality will hit her and convince her that she needs the help that she really does need.

Time to act before tragedy strikes.

Always a tough call, but always essential for safety.
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This sounds very common, no other female is going to come into HER home and do HER work. My Mom is like that, I cannot giver her a gift of all day cleaning by a cleaning company... she would refuse to let a crew into the house..... it would be an insult that someone would think Mom couldn't keep her home neat and tidy.... [sigh]

If it was my home, I would hanging banner saying WELCOME to a cleaning crew :)
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Depending on the severity of your Mom's dementia, getting her co-operation may not be possible.

Sometimes you have to do what is in her best interests, even if she does not agree. Dementia is a continuing deterioration in one's ability to think rationally, which is why proper care is essential to make life as happy and as comfortable as possible for those stricken by this awful condition.

It is your time to be wise.
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First question, who has POA for Mom? Secondly, you don't try to reason with a person with Dementia. Asking them questions about what they want, when there are only one or two safe answers (AL or in home care) is a waste of time. You can either present them with a fait accompli, or you can give a choice "which would you rather have mom, a laundress coming in, or to go to AL?" (the Laundress idea came from someone on this board who couldn't get her parents to agree to in home household help. She realized that they could probably wrap their heads around the concept of a laundress and they bought it; of course, the woman was able to do other household tasks as well. As Jeanne says, you have to meet the client where s/he is, not where YOU are). Being POA is not for sissies; you have to be able to make decisions for your elder without being afraid of their disapproval. It's like being a parent--you don't need to be your child's friend. You need to keep them healthy and safe.
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Denial is horrible. Family never wants to disappoint! I know my mother is going through same thing. In your case though it can be very dangerous, lives are at risk. She still wants to do things so give her a choice thats it! Someone comes to help or she must go somewhere for help. This is soo difficult but if something happens to one of them that wil be MUCH WORSE. She has alwAys been in charge but its your turn now for her own good!!
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