How to cope with Mums dementia?
January 6, 2019 11:30 PM   Subscribe

So we aren’t entirely sure yet but my sister and I think that our Mum has dementia. We are in the process of persuading her to get tested. There is a family history though, so assuming the worst case scenario I just had some questions about the illness, such as: How fast does it progress? (I know there is a spectrum) Is there anything we can do now to make it easier later?

We know Mums preferences on nursing homes and funerals, is there anything else like that we should be asking?
What do you wish you had known earlier/at all?

Other info:
Dad is still alive, healthy and living with Mum
Sister and I live interstate (should we be thinking about moving back to our hometown to help Dad with caring?)
We are all in Australia
Thank you!
posted by EatMyHat to Health & Fitness (8 answers total) 10 users marked this as a favorite
I'd highly recommend Seven Steps To Managing Your Memory, by Andrew Budson and Maureen O'Connor. The authors have excellent credentials, and the book is very thorough and very clearly written. It will give you a lot of information about different kinds of dementia, how to distinguish dementia from normal memory lapses, what treatments currently exist, and so forth.
posted by yankeefog at 2:08 AM on January 7, 2019 [1 favorite]

There is so much individual variation (and some variation by type of dementia as well) that it's very difficult to say how fast it might progress. You could easily be looking at a decline over 5+ years. If your mom is diagnosed she will likely be prescribed medication (cholinesterase inhibitors) that will hopefully slow the progression. There is also enough research to recommend exercise to slow cognitive decline. Some other things to consider:

- your local Alzheimer's society should be a great resource for info and support, both for your mom and family. I would highly recommend contacting them to see what might be helpful for you. They can also guide you through aspects of advance care planning you'll need to consider. Their website is a good place to start for more info!

- If your mom still drives, driving cessation is a conversation to start having ASAP. This is hugely upsetting to many folks and its best to at least start discussing it early even if she can drive for awhile more. Depending on the rules where you live, she may be required to follow up with driving tests after a diagnosis.

-I don't think you need to rush back home, but definitely your dad might need, or at least benefit from, help with caregiving down the road. If you can offer both practical and emotional support when it's needed, everyone will be better off. If it's not feasible for you to move back at that time, it would be great if you were able to help your dad get other hands-on support, either from people he knows or formal services like respite.

Good luck OP, hope your mom's assessment goes well.
posted by DTMFA at 3:32 AM on January 7, 2019 [2 favorites]

If you don't already have powers of attorney in place, get them now.
posted by Sing Or Swim at 4:13 AM on January 7, 2019 [9 favorites]

From where you are now, I’ve seen examples of 1 year until death through to 10 or more years. From diagnosis with Alzheimer’s typically it’s 4-8 years.

Things to do sooner are powers of attorney and finances. Generally ability to handle your own finances goes first, so if your mum has been handling that then perhaps your dad needs to keep an eye on it as well. I would also start asking about your mum’s childhood and family history if you haven’t already and want to know that stuff. It will also help you connect through decline.

In terms of relocating back home, it probably won’t extend the length of time your mum could remain happily at home, but might make things easier for your dad. If you do relocate, you also need to do so for you as most likely it would be a semi-permanent move (years not weeks).
posted by plonkee at 4:33 AM on January 7, 2019 [2 favorites]

I have had two family members with dementia. In one case, progression following diagnosis was fast and difficult. Time from diagnosis to death was about five years. This was probably a later diagnosis in that dementia was fairly well-advanced by diagnosis.

What I wish we'd known then: more about how to set up a live-in care arrangement. We did set one up and it was reasonably successful but we didn't know enough about the market and the options to shop around. I think we could have achieved a better service.

In the other case, my father, diagnosis was about three years ago and I don't think he's deteriorated much in that time, if at all. He is still driving and passes the regular tests for this.

What I wish we'd known then: the evidence about post-operative delirium and its effects on the mental functioning of older men; the effects of chemotherapy on mental functioning, particularly for people who have depression. Hopefully that's not relevant for you.

I also have a friend whose mother has dementia and she has had it for around ten years, with a slow deterioriation. So it really is very difficult to predict.

Two of the books I read were The 36-Hour Day and Contented Dementia. I'm not totally on board with the Contented Dementia approach (and nor is my father), but it's useful to know about. The 36-hour day is helpful with some of its mantras like "learn to love the repetition," even if that's impossible in practice.

I am a bit sceptical about how helpful the medication is, and certainly for my father some of the side effects are unhelpful. We're hoping to review his medication with his GP soon as he is taking a lot of things.

You have talked to your mother about her preferences about care - are you sure she, and your father and you, are aware of all the options? I am working at the moment in adult social care and the big thing locally is extra care housing / very sheltered housing / housing with care. This is essentially living independently with a lot of support. There is research saying it can be successful for people with dementia, and improve cognitive functioning for some people, though it is more successful when people move in sooner after diagnosis.

Can't really answer the question about moving back, as that's about what you feel you can take on and how disrupted you want your life to be.

Not sure how power of attorney works in Australia, but imagine there's some form of paperwork you will want to look in to. Also, you may want to think about end of life directions / do not resuscitate directives etc.

In terms of what would have made it easier ... honestly, practice re-directing conversations. Sometimes I can find strategies to get out of loops or fixations on things I don't want to go on talking about, but it's hard.

Also, any networks of informal support you can set up in advance are helpful. This might not be face to face (eg could be friends and family writing to your mother, if this is something she would like).

Worth thinking about things she enjoys / distraction activities - like putting together family photograph albums or starting to make playlists of things she might want to watch. Worth considering between you, your sister, father and also your mother what your attitude to risk is. Do you want to restrict her activities (assuming she gets to a point where she doesn't have capacity to make some decisions herself) because of safety or are you more laissez-faire?

It is much, much easier in my experience if the person with dementia has some insight into their illness - but this isn't something you can make happen.

We're just starting to investigate dementia life-coaching / cognitive rehabilitation for my father - info here - so that may be something you want to look in to, depending on whether it's available near you.

Best of luck, this is difficult stuff. Happy to be MeMailed if you have specific questions, I spend a lot of time thinking about dementia for both family and professional reasons.

Oh, and one other thing - make sure another family member is at all health appointments (assuming your mother consents). We're currently dealing from the fall-out of my father having been to one on his own and a lot of confusion resulting.
posted by paduasoy at 4:43 AM on January 7, 2019 [3 favorites]

Seconding the 36 Hour Day - so, so helpful. I read Contented Dementia, but it wasn't useful for us.

Our neurologist told us that the faster we move dad, the easier it will be. We did not believe her, but we took her advice anyway. She was SO right.

Dad is still with us 5 years after diagnosis. Mom, however, didn't make it and she did not have dementia. It is very hard on the carers. Make sure you are taking care of yourselves.

If you find yourself Arguing, Reasoning or Explaining (ARE), you are wasting your breath and causing unnecessary stress for you and your mom. Chocolate chip cookies are incredibly distracting and can help when you are frustrated with her. Or take her out for ice cream to distract from something she might be obsessed with. You'll need ready made distractions frequently. Music can also be very distracting. Especially music from mom's youth.

Feel free to memail. I've done this twice and would be happy to answer any questions.
posted by Sophie1 at 7:37 AM on January 7, 2019 [2 favorites]

The thing that really pushed my mom over the edge was all the new drugs a cardiologist prescribed her when she fell at the assisted living place and they sent her to the hospital. The whole episode was unnecessary. She was not injured in the fall, she just couldn't get up. Once the 7 new drugs entered her system, she was too dizzy and disoriented to stand, and the hospital wouldn't release her to rehab until she could. The cardiologist was trying to prevent a heart attack. Since she was 100 years old, and had expressed a wish to go to sleep and not wake up, his efforts completely missed the big picture. I exercised the healthcare proxy as soon as I figured out what was going on, and stopped all the drugs, but she was hallucinating and increasingly wobbly from then on.

Don't let the facility and doctors put their convenience and priorities ahead of your mother's best interests.
posted by Kirth Gerson at 12:58 PM on January 7, 2019 [2 favorites]

I came back to say that we employed a freelance older person's social worker in the first situation I describe, to ensure we knew what my family member wanted and to set up the original package of care (for instance, the social worker found a local charity which was piloting one-to-one memory sessions). This was helpful.

I also asked my father what he would have found it helpful to know when he received his diagnosis. He said: knowing that deterioriation might be very slow; that exercise is helpful; that it's good to talk to people one meets about dementia [did I mention that as a family member you will learn to live with embarrassment?]; and that one should ask questions of one's doctor and ensure they explain what they are doing.
posted by paduasoy at 4:10 PM on January 13, 2019 [1 favorite]

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