My dear friend's mom, who is 95, has been diagnosed with dementia. The mom is getting a bit of in home help, and has just been approved for more.

Friend trained a new person from the agency today. Aide suggested that a wheelchair would be a good idea. My friend adamantly opposes the idea, " my mother can still walk and we can take a taxi..."

I emailed her later today and suggested that when a wheelchair is needed, there won't be any warning, much better to procure it now.

She keeps saying that she won't infantalize her mother. But her mom asks about here HER mom is and when told she's been dead for 35 years, cries uncontrollably.

I feel like I'm watching a runaway train.

Any suggestions, aside from pointing her to Agingcare?

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Logic? Sad. Denial? Sounds like a classic case. Barbara what about going with her to some caregiver support meetings?

(Sigh) She read my copy of Rod Chast and she has promised she'll read Atul Gawunde.

But she's not hearing what her adult daughter, I and anyone else with experience with this awful disease is telling ger. She still thinks she can use logic.

Thanks for all the support!

It's like any advice from someone who has been there done that, we often can't hear it until we have been there too.
In my experience there are two kinds of people in the world: those who want to make plans and want to understand so they read and research on line, and those whose preference is to meet life's challenges as they arrive and never seem to look beyond today. As a planner I look at the day-to-day people in my life and can't help but think they could avoid so much stress if they would only take some time to make some plans, but on the whole they've managed to skate through life just fine and probably think people like me worry needlessly.
There are books and online resources you could recommend but I have a feeling she wouldn't read them, but they may be good for her to have on hand as a place to look up the crisis of the moment.

Oh Barb! You must be absolutely tearing your hair out! Your friend doesn't have a clue about what a valuable resource she has in you, and she is disregarding excellent advice.

I hope your "get it before need" approach works for the wheelchair. Also having the chair doesn't mean it has to be used all the time, but it could be essential when Mom is extra tired, has a cold or other illness, etc. (What does taking taxis have to do with wheelchairs, do you know?) Because it removed his fear of falling, having a wheelchair gave my husband a whole new outlook on life.

Your friend does not want to infantalize her mother. She doesn't have to ... the disease does a good enough job of that on its own. Friend needs to comfort her mother, even when (or especially when) mother is behaving immaturely. Asking where her mother is certainly isn't mature rational behavior. But she shouldn't be punished for it by being made to cry. Is this your friend's denial at work? I don't know how to break through that. Do you have any previous experiences where one or the other of you was in denial? How did that work out?

Might Friend be persuaded to come here for advice?

Could you convince Friend to join a local support group?

First of all, I think the friend should get the actual version of dementia defined better, such as: Is it vascular dementia, mixed dementia, there are numerous. That may help to gain focus with cause and effect a bit. WebMD also has great explanation on 'types of dementia' but that can overwhelm the person, especially if they don't have much medical experience. Age 95 is an amazing accomplishment.

Having in-home care is the first line of defense in slowing down the runaway train, I would think. It probably is cheaper than private assisted living and many do not like nursing homes for a variety of reasons. The Aide's credentials could be reviewed to help the friend understand their experience and resume, and that they are there to help, due to their long-term experience dealing with respite form of care and this type of medical disease. Listening is key, to anyone that is there helping the mother. Better than having no help at all for those that live away from their parent.

People don't listen all that much when they are dealing with this problem. They have great ideas and they do not readily accept others' ideas because they want their ideas to be implemented first, even when the best idea is presented. They just want to fix the problem their way and see that their result made a difference. However, there is likely the issue that the friend does not want her mother in a wheelchair ever. Hmm...

Trying something out can be short-term and if that does not work for 3-6 months, then try something next. It could be explained to the friend that the wheelchair is there when it can bring her comfort when she is tired. It does not have to be full-time, but when the time comes that is has to be full-time, it is already there. People who are in their 80s walk all the time, but when they get to the grocery store to go shop, with a friend or family member, sometimes, when it is even their idea, they just walk over get in the mobile grocery shopping cart and go shop. After they get the groceries, they walk to the car. The point is, the wheelchair helps the person that drove the parent to the store so they could make their own choices, if the mother can still communicate, but the wheelchair helps the person also that brought them to the store to give them independence. Evidently, this helps any aide that is selected help the handicapped person or elderly person do more things for the mother than just do all the tasks another way. This is about quality of care and life.

Geez, the where is the person I like or made me happy incident. That should help the friend one would think confirm the mother is ill. That is better than denial, and closer to acceptance, imho. But still some more acceptance here needed and evidently the wheelchair issue is some sort of visual that brings control to the friend having to be primary caregiver in the past or not, without the aide present. There are those that need control to bring comfort, and there are those that finally agree that reducing fall risk is far better protection. Probably best to explain:

Hey, you can either laugh or you can cry. Your friend chose to cry. That means the friend cares. Often, there are those that can do neither. Laughing is easier choice because it is closer to happiness than misery. Yea, but the friend is having a real difficult time. Some people get mad and argue and that leads nowhere.

At least it is not the parent that is arguing with your friend that they don't need a wheelchair. Instead it is a helpful aide that is confronting the issue of how to make things easier not for the aide, but for both the aide and the friend. They have to share and agree that is going to help both of them, including the mother.

If the mother cannot use a wheelchair at all, and just needs to be driven around by the aide or friend, then I can see where the friend would rather carry the mother from room to room, rather than feeling horrible about the fact the friend may have to do that also, and just not be able to come to terms with that visual.

I think a lot of people want in-home care before anything else and they never get it for a lot of reasons, and numerous situations where the primary doctor tries to recommend to the patient that a hospital bed might help in-home without even in-home care. The fact that in-home care was approved is a positive and the friend should just have more people explain and comfort the friend that she/he is winning as a caregiver, by having that help as opposed to having no one to help at all.

The last thing I will say: more decisions will have to be made, and a wheelchair is an easy decision. Just let that one go, and it will create more time for the friend to make even more good choices as already has occurred. Remind the friend: Gosh, you're doing an outstanding job! You have in-home care. Wow! That is an accomplishment. Enough said. Good luck!

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