Ask HN: Caring for Elderly Parents with Dementia?

If you have the means, I recommend placing her into memory care. I did that for my father and I have no regrets about the experience.

In terms of day-to-day interactions, the best pieces of advice I received was to:

* redirect the conversation rather than argue or correct them.

* always flash a look like you just recognized them and are happy to see them before approaching.

* don't ask them if they remember something. They don't and will just rationalize a scenario in which you are antagonizing them. * don't watch action/war movies with them around.

* don't inform or remind them of their condition. It just makes them sad for a bit and they'll forget anyway.

* ask them about distant childhood memories and play them their favorite music.

I hate to end on this, but this isn't a condition that gets better. There were good days and bad days and they eventually all became bad days. Spend time with your loved one and try to get as many of those good times as you can now.

I appreciate this, thank you for sharing. I spend so much time at work being logical and "fixing/troubleshooting" people's wrong thinking, that I often forget to flip the mode.

On the memory care, I agree I think it would be best, but I come from an Asian culture where this will be viewed as a great transgression of how a child should take care of his/her parents -- so not an option I'm exploring at the moment. (I don't care about what other people think, but I do care about what my mother thinks, I don't want her to think I'm abandoning her, even if it's for her own good actually.)

I can sympathize with your situation.

If you don't have a formal diagnosis from her physician, that might be your next best move. I don't know where you live, but you or someone else that's involved should also look into getting medical power of attorney for your mother. There are a lot of difficult decisions coming up regarding her care and those are preparations best made early.

Remember that many, many people have been through what you and your mother are going through right now. There's a wealth of available information for you. I also recommend that you visit a memory care facility just so you can get some of the pamphlets and other materials that they have on hand for families that are dealing with this.

Finally, thinking of dementia as just a memory problem downplays how insidious it is. It's a loss of overall cognitive function that includes memory, reasoning, and the general ability to think. The only good part about it is that the person suffering from it doesn't typically know that it's happening.

Best wishes and good luck. Your mother is fortunate to have someone who cares about her like you do.

That's very kind of you, thank you again for this. I wish you the very best as well.

I cared for my Mum with dementia for 10 years. The episodes of the early stages I only recognized in hindsight. Stressful or unfamiliar situations were remembered differently to how I saw them at the time. Towards the end she argued about which medication to take, etc. But was docile at the doctor's surgery. My Mum also developed macular degeneration and couldn't read and watched very large screen TV up close.

I concur with @Smeevy, especially about not arguing / correcting.

All I can add is to grow a thick skin, because you will be attacked over hallucinated events and to accept that the condition does go through swings. There are times when they seem almost like old times and then without warning out comes something totally hallucinatory.

It's like they are wearing Adam Savage's (MythBusters) T-shirt: "I reject your reality and substitute my own." And you just have to go with it.

Thank you for sharing, I appreciate it. I do need to grow thicker skin. I'm taking these hallucinations too personally I guess.

I reject your reality and substitute my own. <-- I love this quote!

I can feel your frustration and burnout. You are definitely not alone. Dementia care is a long term fight, it will be nice to have "a support team". From your text, I can't tell if any social resource can be utilized. Are there any associations such as Alzheimer Association around you offer caregiver support? Go join a caregiver group (physical or online), you might learn different care approaches from other family caregivers, places are friendly to dementia patients, or tricks to transfer the attention and so on. Do take good care of yourself, it's actually the top priority.

"You are definitely not alone" -- that gives me comfort, thank you for this.

I have not actually looked for such an association. I'll do so.

Lots of good ideas on this thread. I'd like to second the idea of getting the legal affairs in order ASAP.

This will help out a lot in the future.

And don't forget yourself during this time as it seems that you are some kind of primary caregiver so,I'm not trying to add additional burdens on you but, It helped me to seek out some kind of " counseling" and psychiatric help just to make sure to myself I was making the correct decisions.

There is a long road ahead of you that you will need to navigate - and I'm sure you will do this well.

Stay strong right now+ no matter how bad it seems, It could always be worse ( but it isn't)

You will find a way through this

Thank you for this. I did try to look for some psychiatric help, but it wasn't easy. Many of them are younger than me so they don't understand and/or cannot empathize.

It is a long road indeed. Physically my mother seems extraordinarily healthy for her age. Inputs like yours do help in finding my way.

I'm dealing with something similar. I used to sit with my mother to talk but almost immediately she would start talking about how unfair life had been to her and about all the people that had done her wrong. It was negative that led to negative. It was hard to take.

Eventually I got tired of it and started to negatively reinforce it. Instead of consoling her, I started to tell her how hard it was to hear what she was saying and that I didn't want to hear it anymore. I asked her to focus on the positive parts of life and gave her samples of what real tragedy was like by pointing out samples in the news that she watches every night. I know it was harsh but I don't think it was harsher that her recounting the same stuff everyday to me. The negativity has slowed not stopped but at least we can have a conversation now.

This is what I did but I can't recommend it to you since your situation can be so much different. Also, her short term memory is still functioning to a point. She mostly does her daily care and she requires very little help.

That's very interesting. Somehow, not in an unkindly sense, I can't help but feel it's a bit like "prompt engineering". Thank you for sharing your experience.

I have a few friends with parents with dementia, I didn't really fully get it. I watched The Father on Netflix, Anthony Hopkin's latest film and I thought it was very powerful. It gave me a lot of insight on what might be going on in someone's mind with that condition. Probably one of his best performances.

I'll give it a watch! Thank you

It's quite upsetting, but valuable I think.

Having known a few people in this situation, yes it is indeed common for people to imagine slights against them. Common for Alzheimers sufferers to wrongly accuse their offspring of stealing from them. This can happen because you're trying to manage their money for them, ensure utility bills are paid etc. Unfortunately, sometimes people become estranged from their families because of this. Don't underestimate the amount of stress you can be under simply giving regular care to a person in this state. Stress is stealthy, it can creep up on you, suddenly you overreact to things, snap etc. So I'd say give yourself a break if you can, don't be afraid to ask others for help. There does sometimes come a time when you have to give up and let the person go to a care home. Its the last thing one wants to do of course. A person in my extended family resisted doing that for a long time, it wasn't pretty, I think the affected person "luckily" died before their behaviour got even more out of hand. The best thing you might be able to do is look into getting some respite from caring and/or have some activities your Mum can go to. There's all sorts out there now in terms of help for Alzheimers patients, community things for example choirs, because learning songs helps memory etc

Thank you for this, yes the church helps quite a bit here, with the community and the activities for the elderly. Appreciate you sharing the advice and experience.

People with dementia often perceive discrepancies where none exist, and then believe those imaginary discrepancies are the result of foul play by others.

Keep your mother in an environment where she can run on autopilot. Change nothing.

I recommend reading The 36 Hour Day

It’s helped me in taking care of my aunt.

It was recommended to me by a doctor who was taking care of their dad.

I'd been taking care of my 86 year old grandpa who I hold a POA for and make his decisions for him. About 4 years ago, I became his POA as he had none and being as I was taking care of him, it only made sense.

I've really known him for the past 20 years and he's had early onset dementia since his late 60s-early 70s. As long as I kept him in a routine of breakfast/meds, walk, lunch/meds, mail, dinner/meds, walk/coffee/news, he was doing just fine.

Recently, he took a turn for the worst. I had to go away across country for a month to take care of my dad, who has Agent Orange. When I came back, this is when all the problems started. Something messed up his routine and he wasn't taking the proper dosages of his medicines, despite the cup system I set up for him.

He was never able to get better or return back to the way he was. I suppose this actually occurred after he had surgery to remove what we thought was colon cancer, but turned out to be a oversized polyp. But just two months after that surgery, he's experiencing renal failure, liver failure, and congestive heart failure. In addition to his organ failures, his dementia is getting worse.

The VA hospital doctors are recommending I put him into a nursing home. Just a month ago, he was doing fine, taking his medicines, remembering things. Now... I'd been helping him take his meds but some days I wasn't able to get there on time, so at 8 PM one night, I put his meds by his coffee and said to take them in the morning. When I got to his home to check on him, he'd forgotten to take his meds and went into a Afib arrest, heart rate bpm at 170 and bp at 80 over 60. Right now, his medicine is keeping him alive and he doesn't understand.

Dementia is quite common in a lot of people and we're all always at risk for it. It is not ever going to get better. The best things you can do:

1. Make sure you understand the wishes of your parents meaning: you know what they want while they are living and after they die. Yes, you have to accept this reality. So get a living will, DNR requests, etc. Make sure their Will states what happens, including assets and bank accounts, etc.

2. Get the POWER OF ATTORNEY, MEDICAL POWER OF ATTORNEY, and ANYTHING YOU MAY NEED TO PROVE THAT YOU ARE NOW A LEGAL GUARDIAN WHO MAKES DECISIONS ON THEIR BEHALF.

3. If they don't already have life insurance, go to a funeral home and make plans from the plot to the casket and funeral itself. You can start paying into an account and it gets a good return. Take care of this asap.

SPEND DOWN AS MUCH AS POSSIBLE OR GET THOSE ASSETS INTO YOUR NAME OR A TRUST.

4. Spend as much time with them as long as you can, even if they can sometimes be annoying.

5. DO NOT LOSE YOUR PATIENCE. It is not their fault they are in and out... they are likely trying their best.

6. Accept this as life and a part of your life and appreciate the time you had with them.

Thank you for taking the time to share this with me. I really appreciate it. All good and important pieces of advice.