Many people say that one of the biggest worries about growing older is the fear of losing their memory.
And yet for many people when this does start to happen they have no awareness of it. It’s their family and friends who notice it most – and inevitably have to pick up the pieces.
Trying to get someone with early dementia to recognize they need help is not easy, and the subject demands far more attention than in a single article like this. However, we’ve outlined a real case study here and we’ve pulled together some tips and advice from the family concerned.
You may find this advice helpful if you’re in a similar situation with a relative or friend with dementia…
Alice is in her eighties and was widowed 12 years ago. She had worked full-time before getting married and had always seemed capable of managing her household affairs. She seemed OK for many years after her husband died, but then her family noticed she was getting increasingly forgetful.She’d always been independent, and was adamant there was nothing wrong. When anyone offered to help her manage her affairs, she was hugely defensive, sometimes aggressively so, and refused all help. She would also not allow anyone from Social Services to cross her threshold. Alice’s generation meant it was her husband who had actually managed all their financial affairs previously, and so it was perhaps a mixture of pride, embarrassment and mental confusion that led Alice to keep insisting she was still perfectly able to manage things now.However, she was forgetting conversations, her house was deteriorating, she was losing touch with the realities of day-to-day life, she would open her post but not deal with it, junk mail was accumulating in every available space in the house, and bills and important items of mail were getting lost in all the piles of paper.
Not only was this a fire hazard, especially in the kitchen, but it soon became clear from the final demands lying around under all the paper that Alice was not paying her bills. Having her phone cut off and receiving a demand from the power company to enter her property were the final straw.
When asked by her family about these things she continued to deny anything was wrong – and that the supplier companies were at fault – because, of course, she’d forgotten that the bills and letters were there!
Thankfully, she’d previously set up a Power of Attorney, after some persuasion, and it was now clear that this power would have to be used. However, because for various reasons she would know this was being done, it was going to be a whole lot easier for the family to deal with everything if she at least gave her consent to this.
Here are some of the family’s ideas about getting a relative with dementia to recognize their need for help:
- While your relative is still mentally well, persuade them to set up a Power of Attorney. This is vital. As soon as they start to lose the mental capacity to make decisions, it’s too late to set one up. You could agree to set one up for yourself at the same time, so that it becomes a ‘family thing’. You could also mention people you all know who’ve already set up Powers of Attorney. Reassure your relative that it won’t change anything in their life right now: It’s simply a kind of ‘insurance policy’, so that someone can step in and help should that ever be needed.
- If appropriate, mention how much kinder it is to the family if a Power of Attorney is already set up and in place, otherwise the family may face months of hassle with various public bodies in order to be able to protect your relative’s money and assets. And they really wouldn’t want their family to have to go through that, would they?
If a Power of Attorney is already in place…
- Next time you visit, casually ‘notice’ one of the unpaid bills or final demands lying around and start a conversation with the person about whether they’d realized it was due. If they dismiss the problem and say it’s already been paid, ask how it was paid and start a conversation about how the person generally pays their bills. You could also say how easy you find it to pay your own bills by direct debit, because that way they never get missed.
- If your relative has already had a service disconnected at some point before now (e.g. electricity), remind them how awful that was. State how difficult it will be not having any heat, light, kettle, toaster, phone, etc. when it happens again. Mention that delays in paying some bills can lead to a court summons. Stress that you really don’t want this to happen to them – and that you yourself also don’t want to be faced with picking up the pieces and sorting things out. Although this can sound harsh, it does often help get the message through.
- Depending on the situation, you could also say that you’ve called the supplier company and asked them not to disconnect the service (even if you haven’t). Say that it was because you were so concerned that your relative would be left without heat/light/power/phone, etc – and how awful that would be. This helps reassure your relative that you’re on their side.
- Mention that when (when, not if) they get cut off again they will no longer be able to live in their house (because of the lack of light, heat, power, etc). These tactics, although not ones you’d ordinarily choose to use, can often help someone realize that there is actually a problem. A good question to ask directly can be: “What will you do when you get cut off?” or “Who will help you sort this out when you get cut off?”
- Once there is at least some acknowledgement of the problem, it’s good to follow up immediately with a firm yet reassuring statement: “I am going to help you sort this out.”
- If you are the appointed financial Power of Attorney, you could also add that the current situation is putting you in a very difficult position, because you have a duty to see that the person’s affairs are being managed properly – and if you don’t, you are ultimately responsible. This can help your relative understand that they need to help you here, too – to allow you to protect their financial position. If you can help your relative feel they still have an important role to play in sorting their own affairs out – and that you really value their help – it can often encourage them to more readily cooperate and accept help.
- Then it’s a question of gently suggesting you now have a ‘quick look’ through some of their paperwork, while reassuring them that you’re not taking anything away from them and that they are not losing anything.
- By going through this kind of ‘consent’ process, it can then be easier all round to start using your Power of Attorney – while continually reminding your relative at every opportunity of the conversations you’ve now had about it.
These situations are never easy, and each family has its own strategies. We’d love to hear how you’ve dealt with this kind of situation yourself.
Please leave any questions or comments below.
Dad’s Being Mean To Me
In all these situations, the aging parent was a controlling type person before dementia developed. The nearby adult child is is trying hard to protect mom or dad from himself or herself. The parent is uncooperative. In fact, in all these cases, the parent has turned on the very person who is trying to supervise, protect or otherwise do the right thing for Mom or Dad.
“You’re stealing from me!” is an accusation the adult children are hearing. “You don’t care about me, you’re just trying to lock me up!” is another accusation.
This could be you. When your aging parent turns paranoid, accusatory, abusive and unreasonable, what can you do?
For the millions of adult children and spouses of loved ones with dementia, this scenario is real. Money is a focal issue, as your aging parent so often believes that someone is stealing his money. If there is a Durable Power of Attorney the parent signed some time ago, your parent becomes enraged and cancels it. (Unfortunately, until declared incompetent, they can revoke a DPOA).
Or, if they’re getting in trouble with money and the adult child tries to persuade them to sign a DPOA, they refuse. The parent is at risk for being ripped off because of poor judgment about money.
It’s not easy, but we all have to have a plan in these very challenging situations.
First, try to get cooperation from your aging parent’s doctor. Because of confidentiality, the doctor can’t discuss your parent’s medical affairs without your parent’s permission. If you don’t have permission, you can still communicate with the doctor, even if he/she can’t respond. You can write to him or her.
I encourage adult children to jointly write a letter to the doctor explaining your concerns. E.g., “we’re all worried about Dad because he is verbally abusive, has made many mistakes with money lately and his behavior is erratic. Give an example or several. Have all involved sign the letter. The doctor is now on notice of the problem and may request an appropriate evaluation.
The doctor may be more persuasive than family in getting your elderly parent to accept help.
Second, if your aging parent is not only refusing help but is clearly unable to care for himself or herself, you can call a family meeting and brainstorm about the best way to approach your parent. Two heads really are better than one. One adult child may be able to get through to Mom better than anyone and it’s worth a try If everyone in the family and perhaps a best friend is willing to approach your parent, you may be able to get your parent to accept that help is necessary.
Third, if your parent is in danger with extreme self-neglect and he or she has alienated the family with abusive behavior, you can contact your local adult protective services, part of the social services department. Report the self-neglect. Be specific about what you see at your parent’s home.
A social worker can investigate and sometimes, if your parent is truly a danger to himself, the county where your parent lives can begin guardianship proceedings. Contact your Area Agency on Aging for information if you’re not sure where to start. A guardianship attorney is a good source of information about this problem.