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Parent with dementia - how to reconnect?

(17 Posts)
3boys1cat Fri 14-Oct-11 20:34:18

Anyone else out there who has a parent with dementia? My 78 year old DM has recently been diagnosed with Alzheimer's, though she has been going downhill in terms of short-term memory loss for several years now.

I am now finding it difficult to relate to her. It is hard to have a conversation with her as she is unable to remember what she's been doing, or anything that has happened recently. On the phone, we tend to have conversations where I just ramble on about what's been going on in my life until I just run out of steam. When I am with her in person, rather than on the phone, conversation is still very hard. We tend to sit in (companionable, I hope) silence for long stretches.

I just feel sad that I can't connect with her more. She always seems pleased to see me, and I know that inside her somewhere is a person who loves me. BUT she is not my mother now and hasn't been for some time.

I don't mean to sound self-indulgent, as it is my DF who has the hard road to follow here, because he is with her almost all the time, and she is not the woman that he married either. It's obviously not easy for my DM either, as she seems pretty baffled by life a lot of the time. Does anyone have any suggestions for ways to connect with her so that the time we spend together brings her more pleasure?

casperella Fri 14-Oct-11 20:45:07

Am in the same situation as you, though DM has vascular dementia rather than Alzheimer's. Unfortunately we experience the same re lack of conversation, esp as she has now lost a lot of vocabulary.

One thing that might help, depending on your DM's longer-term memory, would be to reminisce about old times, eg looking through old photos, etc. I often find mum will remember stuff about her early life but not the recent stuff.

Also you are probably aware of "sundowning" where there is more confusion, etc as the afternoon turns dark, so it might help you to see her earlier in the day (although your DF may need more help at those times....).

It is really hard and you have my sympathy -dementia is a cruel illness and not well understood by most.

seriouschanger Fri 14-Oct-11 20:49:44

Can you make a book of photos when you were little...and talk about past....this may help you all to share memories you can all talk about?

Talk about her school days...learn how she loved things when younger...try and she where her memory cut off is...is it before marriage or after having her dd etc or later....talk to her about what she can otherwise it is frustrating pushing about this morning last week etc....memories can trigger others but most importantly share togetherness, laughter, tears, love etc.

Otherwise you could take photos and print them off daily ie where she went yesterday on trip out and talk about the photo the next day. It is very hard for any rel to deal with.

Henrythehappyhelicopter Fri 14-Oct-11 20:51:05

Agree with Casperella.

We are in the same situation with MIL. We spend hours looking at photo albums, have collected new ones from her siblings. She really seems to enjoy them.

Neverever Fri 14-Oct-11 20:52:24

sad 3boys, my gran has Alzheimer's it's an awful disease also I work with alot of people who suffer from it. It is tough at times I know my grandad gets frustrated on a regular basis, Alzheimer's.org.uk have a lot of good advice for patients and family members, I find familiarity helps, my gran will tell me the same stories every time I see her and I try to listen with interest all the time as if it's the first time she has told me. My grandad keeps her routine the same which we think helps also which broke my heart is my dm found a notepad which had all our names and her address and phone number written down so she is more than aware of what is going on. A part of her may change but she is still your mum, does she have vivid recollections of her long term memory? My gran does, can tell you anything about her childhood and when she got married. sorry am not much help.

JoinTheDots Fri 14-Oct-11 20:57:57

I used to find doing things with mum was easier than conversation sometimes. she could still answer simple crossword questions, like "common garden bird" and we would look through the local paper together. Photo albums are good and so are scrap books if you have them.

It can be hard but I bet she just loves having you around. When mum got really bad and lost most of her words I would brush her hair, share chocolate with her or give her a manicure as the physical contact was nice when words no longer came.

It is very hard when they change so much but you are doing a lot by taking the time to chat to her

3boys1cat Sat 15-Oct-11 07:43:53

Thanks for your responses everyone. Next time I see her I will try looking through her old photo albums and see where that takes us. It is so random though whether she will remember people and places in pictures or whether she will not know who they are.

I think I am still struggling with the change in our relationship, but need to stop feeling sorry for myself and focus on making the time as good for her as possible.

lookoveryourshoulder Sat 15-Oct-11 10:04:09

... trying listening to her favourite music together - then the long silences don't seem quite so long....

When I visit my DM in her Nursing Home they are always playing "old time" stuff in the communual areas and the residents all seem to come alive to all the old songs.

Unfortunately that kind of stimulus is now far too late for my Mum as she is immobile and barely conscious these days.

Perhaps when you sit together you could give her a hand massage or something - it may help to reconnect you both together - but I guess that this is a personal thing and may not appeal..

It is very very sad - but be kind to yourself and try to remember her at her best.

MitrochondrialEve Sat 15-Oct-11 12:02:31

My dad enjoyed music channels on cable TV - the ones with rock 'n' roll, hits of the sixties, ballads, etc. He would sit and clap along and sometimes say how much he enjoyed it.

My dad liked to feel useful, so don't do everything for your mum - my dad for a long time could still make tea, feed the dog, take rubbish to the bin, etc. He was pleased to be able to do things.

Look at getting a carer in for an afternoon, Alzheimer's Society volunteers do this - or can take a fitter person out for tea, etc. My dad liked going out for a run in the car, and tea and cake with his volunteer. Your DF needs a break. Social work can help with lots of things, also ask your mum's gp to put you in touch with the right team locally, so that they are aware that she will need more help over time.

We waited far too long before asking for a social work assessment - we could have had a carer to give my mum a break much earlier - but like many people she wanted to feel that she was coping. Convince your DF (if he needs it), that your mum will benefit from him being better rested and able to get on with some things, e.g. go to the bank while the carer is there.

Your dad is / will become eligible for respite care for your mum. My dad goes for 'holidays' to a very nice care home, while my mum gets away for a week or so.

If your mum would go, enquire about a day centre place - you can wait for months for a place to come up, so ask now. My dad didn't want to go to day centre, and didn't enjoy it - but the 30 or so other people there seemed content to be there. My friend's mum only liked day centre for the art activities afternoon - so she stopped going on the other days - but was happy to go out to "art class".

My dad has had dementia for a number of years now, and is in a much different state from your mum, but even now, his face lights up when he sees his grandchildren. He also watches their TV programmes with lots of animation - singing and clapping along to Night Garden and Waybuloo.

CMOTdibbler Sat 15-Oct-11 20:57:02

You might find the book 'Contented Dementia' helpful - it really helped me to find ways to talk to my mum in ways that satisfy us both.

LizzieMo Sat 15-Oct-11 22:45:11

Sorry don't have any answers but just to add my solidarity, my Mum is going through the same, you get to the end of a conversation and she starts asking the same question which started it off in the first place- no memory of what you just said. It is heartbreaking. Each time I see her it is like I have lost another piece of her. I agree, talking about the past helps, but sometimes she obsessively goes over memories of friends she lost touch with 40 years ago and vows to track them down to find out what they are doing now!!!! I find taking her out on trips helps as it gets her out of the house (and away from my Dad who is not at all patient with her) It is a cruel , cruel disease. Good luck to everyone in the same boat.

garlicScaresVampires Sat 15-Oct-11 23:18:40

I am sorry, OP, and everyone else who is losing a loved relative this way. They disappear, bit by bit, so it's a long grieving process sad

In the early days, it's good to discuss the illness during periods of clarity and introduce memory aids - post-it notes on everything, fixed routines and everything in its (labelled) place can help. The advice about revisiting the past is great, too. The old memories are the last to go. This can be a good time to create her 'life book' as, with little prompting, she may recall long-forgotten events in technicolor detail.

When befuddlement really sets in, it is better for everyone to go along with the world as your sufferer sees it, rather than trying to force recognition of the real world. This approach is now being adopted in care homes and there are some wonderful books on it. My SIL, who recently lost her mother to Alzheimer's, did this instinctively - she chose to 'see' dead aunties where her mother saw them, to 'catch her train' when mum advised, and so on. It created a very soothing atmosphere and her mother displayed very little tantrum behaviour.

Wishing you luck and peace.

QuintessentialShadyHallows Sat 15-Oct-11 23:36:40

Hi there,
I feel for you.

My mum has Levy Body Dementia, which differs slightly from "normal" alzheimers. (it includes some degree of hallucinations and psychosis in addition the the disorientation and memory loss of alzheimers, coupled with some Parkinsons treats) She lives in a nursing home now, as my dad is disabled and in a wheelchair, and unable to care for her.

I have made a "memory album" for her. It is basically a selection of important photos, in chronological order. A few photos from her youth, her wedding photo, baby photos and family photos including my sister. Photos of me as a baby, photos of our family as me and my sister grew up. Photos of my mums family. And photos of my sisters daughter, and my children, etc. They are glued into an album with descriptive captions under. This means that anybody can pick up the album and talk to my mum about the photos. They can say "Oh look, this is you on your wedding day, what a nice dress you have!" "This is you and your oldest daughter." and the idea is that her memory of her family and her life can be kept alive for her by anybody, not just me. She loves her album.

I agree that a parent with alzheimers is still the same person within. But they are also a new person in their own right, and this must also be recognized as the time spent with them now is very much on their terms, and it is important to both follow their lead, and also to a degree bring them into OUR reality. Although, I think my mum prefers to stay in hers, most of the time, and I let her.

I am getting to know her all over. She is still the same lovely woman as she has always been, but her life as it is now, is different from the one she shared with us.

She now has a baby doll. He has the same name as my youngest son, whom she loves very much, and to her it is a real baby. My mum is living the life of a young single mum, whose husband have left her, and she is having a work placement in an institution. She worries about her babys eating, finding babysitters, what her parents (dead of course) are up to, where her siblings are, etc. I play along with this, so as not to upset her. I dont lie to her, but I dont correct her either. If she asks me how her mum is, I say I havent seen her in a while, but I assume she is fine. The conversation then moves on. If I were to tell her that her parents are dead, it will be bereavement all over again.

Most of the time she does not know who I am. She recognizes me, and she loves me, but as SHE is a young woman, she does not connect that I am her daughter, as I am too grown up for that, seeing as she is a young woman now.

This means that when we meet up, I let her think I am her sister. It does not matter who I am, as long as we have a good time together.
If I call her, I tell her "hey mum, it is Quintess, your youngest daughter, how are you today?" And then I talk about my life, my issues, and she will very often be able to follow the conversation and it becomes clear that she remembers things I have told her previously, and it is possible to "keep" her in my sphere for a little. She may after a while start talking about her babies, and I let her. Then I can steer the conversation back to me, or real life for a bit, and she is with me some more.

It is only natural for your relationship with a demented parent to move on, and change. Try to think of it as getting to know a new person who has very similar personal characteristics to your mum. It will get easier!

CMOTdibbler Sun 16-Oct-11 08:47:37

To add to what Quint said about memory books, I've been making my mum a photobook each year for 4 years now. Its pictures of our family with captions like 'Grandma, I loved the day that you picked raspberries for me, dsxx' and 'cmot and mrcmot looking very smart for dbs wedding'. She spends hours and hours looking at them, wheras photos on their own don't give her any context. And she can show them to people who ask about family without being asked questions

MsWeatherwax Sun 16-Oct-11 09:05:47

You could try the Pictures to Share books - some libraries have copies, or you can buy them here: http://www.picturestoshare.co.uk/. I've used them and they just give you something else to talk about, rather than the same endless things on a loop (you know how they can get stuck on the same stories/arguments).

3boys1cat Sun 16-Oct-11 19:42:57

Thanks again to everyone who's replied for your suggestions and support. Quintessential, what you said has really struck a chord with me, particularly the bit about getting to know her as a new person.

Hugs and best wishes to everybody going through this.

ElsieMc Mon 17-Oct-11 13:48:11

Try not to give up. My mum's dementia is now end of life and she is bed bound, does not recognise anyone, has little or no verbal communication and is only capable of eating pureed food. She is incredibly frail.

However, occasionally she will respond with some clarity for a brief time. I brought my grandson to see her, he is confident and walked up to her bed and said "Hi, Great Nana". She looked at him and responded "Hello love". Sometimes I will walk across the room with flowers and she will say "Oh, they are nice" then she switches off again.

I sometimes sit and chat generally about her grandchildren, what they are doing etc. It can help you both to reminisce.

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