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Dementia - how to hold on to relationships

(16 Posts)
GeraldineGransnet (GNHQ) Thu 05-Jul-12 15:59:11

This week's guest blog post from Sarah Reed is about how she managed not only to hold onto her relationship with her mother for longer than expected but also deepened it. Is this a really rare phenomenon? Comments on dealing - both practically and emotionally - with dementia.

ninathenana Thu 05-Jul-12 16:47:10

I feel I 'lost' my mum about 18mths ago. The woman I visit now is not the mum I had a close and loving relationship with.
I envy and admire Sarah the fact that she still has this. As a member of an Alzheimers forum, I would say this is quiet rare. In the latter stages at least.

If I had some news, it was mum I wanted to tell. Now it is impossible to have a conversation with her, she has forgotten the topic by the time I've finished speaking.

We used to enjoy days out together, shopping/lunch now she is virtually immobile, and falls asleep in the middle of eating.

As for practicalities, we have had to disconnect her gas fire and gas cooker, hide the toaster. (carers come in and her meals) She has a life line but we know she is incapable of using/responding to this. Her doors are alarmed but she is oblivious to the alarms, and quiet frankly is a danger to herself. Hence the fact my brother and I are currently look for a care home.

Grannyknot Thu 05-Jul-12 19:35:56

Interesting illness, Alzheimers/dementia. My MIL is now in an advanced stage, she had a very stressful life, sometimes I wonder whether she 'ran away inside her own head'. She has had Alzheimers for a very long time, slow progression, almost 20 years ago she asked me to take her to 'the specialist doctor because something isn't right' (she couldn't work out how to cut a quiche into 5 servings that day) when she was in her early sixties and was diagnosed then as having 'mild Alzheimers'. She is now 82 and lives with her daughter in a family home (in South Africa), where she has her own quarters and 24/7 care (there's a bed in her room for the night staff). She is extremely healthy physically, in fact she has put on a great deal of weight. She no longer speaks in any intelligible manner, but she appears to be - content. I remember reading Alan Bennett saying something along the lines (of his own mother) 'with the stresses and strains of every day life removed, and every other need taken care of, (I felt she) will live forever'. According to a website on the clinical stages of Alzheimers, my MIL is at late stage 6, there are 7 stages. It says that with superb care, stage 6 can last a long time. A kind of limbo. Like Alan Bennett's mother, she always loved food, and still does - eats whatever she is fed without any problems.

Vangran Fri 06-Jul-12 13:15:31

My MIL has been getting worse over the last few years and it is so sad to see a loved one deteriorate slowly but surely. We live a long way from her care home
where she gets 24 hour care. We cannot praise them enough. MIL knows our faces but that is all. Our names pass her by unless she is having a good day which, if not on our two day visit means we can't communicate. She can still read but it is just words and her hearing is long gone along with the hearing aids. Her teeth get mislaid and that makes things even worse. Her conversation doesn't make sense as she goes from now back to her childhood. So very sad, so very sad. She is gone and we have to come to terms with that so enjoy your MIL whenever you can.

Dee Fri 06-Jul-12 13:26:07

My mother had Vascular Dementia and I too felt I had lost the essential part of her long before she died 5 years ago.
When I'm particularly worried about something I still long to be able to discuss it with her, but am fortunate that I can talk to my adult children about this.
We have many jolly conversations about what Grandma Betty would think or do about things.
She was a larger than life character, very good with words and very funny.
As her dementia got worse she kept some of this but the conversation would be on a 5 minute loop which just repeated itself.
Anyone meeting her briefly wouldn't realise anything was wrong. She had a wonderful Social Worker who got to know us both well and took my needs into account too. Eventually like 'Ninathenana's mother it became unsafe for her to stay in her sheltered housing even though she had carers 4 times a day and she moved into an excellent care home where she spent the last 5 years of her life. All the staff had dementia training and they met her increasing level of needs very well.
Finding the right care home isn't easy. I looked on the Age Concern site which was much more helpful than the Local Authority one. It gives details of inspection results which are useful for eliminating the ones you wouldn't consider but as a retired teacher I know inspection results only tell part of the story. I think the key is finding somewhere which keeps their staff. My mother's home did this and invested in training, promoting people from within. This meant I built up a close relationship with them and was able to be an equal partner in looking after my mother.
I still visit the home as an elderly neighbour lives there now.
The staff still talk about my mum and clearly saw beyond the shell of the person she had become. This brings me enormous comfort.
I invested a lot of time and energy into making sure my mother was safe and as happy as she could be. It was very, very hard at times but I knew I was in for the long haul and made sure I got the emotional support I needed from friends and family.
I have never regretted it. When she died I knew I had done everything I could for her, just as she did for me when I was a child.

NanaAnna Fri 06-Jul-12 14:32:18

My husband is in the early stages of dementia. He refuses to admit there is anything wrong with him, and can be verbally aggressive. Sometimes it's like talking to a 5 year old. My children haven't yet seen this side of him and think I'm exaggerating, so I have no support. It's very hard and sad for both of us.

westieyaya Fri 06-Jul-12 14:43:59

I found Sarah Reed's blog very illuminating. I am a full time carer for my husband who is in the early stages of vascular dementia along with various medical conditions and am in a constant battle with care services to get him assessed in order to access further care and support. My main bug bear at the moment is getting occupational therapists to come in and suggest ways of moving him to a shower room or providing basic moving and handling equipment like a door ramp to access the garden or 'slider' to help him in and out of the car
I tried the route of looking at photographs but found it so distressing when he couldn't recognise our family or even our wedding photo. The more I read about the condition the more symptoms I recognise. We are fortunate in having a local dementia care residential home and his name is on their waiting list although I wish to care for him at home as long as possible.

Grannyknot Sun 08-Jul-12 09:48:06

'...enjoy your MIL whenever you can.' Thanks, Vangran. Amongst the good advice we've been given in the past was to 'go where she is, with her'. So by doing that, her 60 year old son (my husband) enjoyed many happy hours with her pretending to be her brother (there is a strong resemblance) and that they were at infant school together in the village where they grew up, or swimming in the canal as young children, or playing on the beach. She would become animated and happy, and I must confess, it provided the rest of us with much amusement, and joy. Not because we were laughing at her, but because it provided a bit of levity and lightened up a sorry situation. It was especially poignant, because although she no longer recognised who he was (despite still knowing me for example), he could spend quality time with her and engage with her almost better than anyone else. Sadly all that is gone now. I had an amazing momentary breakthrough though - my MIL used to play piano and sing in the local operatic society, and I played piano for her recently, she became very interested, the carer brought her over to the piano, and she leaned close to me and whispered in my ear in a clear and strong voice 'thank you'. Then she zoned out again.

Solitaire Sun 08-Jul-12 10:56:51

My dearly loved Aunt has had dementia for 10 years and was a second mum to me, having no children of her own. In the last few years she has been unable to care for herself and I have a 50 mile round journey to care for her in a small village without any shopping facilities. Just before Christmas I managed to get carers for her who went in each day and took food.
I tried in vain to have her assessed for a residential care home but the social worker decided otherwise and without her support the charges would be £2300 each month, which I couldn't do.
In March my Aunt was admitted to hospital by the social worker, who finally agreed in my absence that she was unwell and hadn't been able to get out of bed without help for 2 days. Her bladder was terribly distended but she was unable to pass water.
After 3 weeks of hospital treatment the social worker arranged for my Aunt's discharge home, doubly incontinent, immobile and to live alone, but with carers 4 times a day between 8am and 8pm.
The hospital staff, with my support, refused to allow her discharge until there was an arrangement for her to go to residential care. Under immense pressure of being charged fees for each day my Aunt remained in hospital, the social worker finally agreed to part fund my Aunt's care in a residential care home.
My Aunt died on the very day she was to be discharged.

Grannylin Sun 08-Jul-12 11:00:18

I have been exceptionally lucky with my Mum.She is in a wonderful local authority care home in Cumbria and has vascular dementia which in a strange way has changed her personality for the better in some respects. Whereas she used to have quite an acerbic tongue, she is now very gentle, calm and funny. She has a boyfriend and keeps everyone entertained- the life and soul of the party according to the staff. Admittedly when I make the 700 mile return trip from Devon to see her she always says "What have you come for?", it's nothing compared with the relief of knowing that she is happy in her own way.

Solitaire Sun 08-Jul-12 11:11:01

My apologies, I should have contributed to 'how to hold on to relationships' too!
Old photographs are a great way to initiate conversation and can reveal some very interesting stories as well as building a family tree.
My glamorous Aunt recalled happy days in the cycling club and only later did we discover that she had a tandem and could easily find some willing young man to pedal, while she chatted in the rear to other cyclists, often from other clubs who rode alongside!
Tales of her days in the Land Army had in fact amounted to approximately 2 weeks according to her brother (my 91 year old father) because her wrists hurt.

My Aunt's late husband was a Royal Naval officer and she had a collection of jewellery, clothes and gifts from around the world which my sisters and I used to dress up as children and we sat and chatted many hours about those days.

My 8 year old grandson was recently discussing his friend who has learning difficulties and repeats questions ad infinitum. My grandson said "I don't mean to be rude Gran but isn't it like talking to Auntie again" Out of the mouths of babes.... :0)

Sbagran Sun 08-Jul-12 12:00:18

My dear late Mum never got as far as total dementia bless her but at the latter stages of her life was getting confused and muddled especially with people's names.
Her mother (my darling grandmother) had severe dementia and I feel my mother, when she realised what was happening to her, became scared that she was going to be the same.
When Mum went into residential care DH and I had to clear her flat out and came across several old photos. Together, on Mum's 'better' days we sorted out who was who in the photos.
I then made a book for Mum with a photo on one side of the page and on the page opposite a description such as 'This is .... he is my great-grandson. His mother is ........ who is my granddaughter. Her mother is ............. my daughter.
We kept this book close to Mum so that she could look at it whenever she wanted and when we visited we used to look at the photos sometimes covering up the opposite page. We would then ask Mum who it was in the photograph. It kept her brain stimulated and she enjoyed remembering experiences she had had with the relevant person.
The beauty of the book was that whoever went to visit Mum could look at the book with her and identify the various people even if they had never known them.
A hint for anyone who may be experiencing the early stages - if Mum was having a 'bad' day she never felt bad at not knowing who it was in the photo as on those days we wouldn't cover the details up!
My sincere sympathy goes to anyone going through this with a loved one - it is so hard.

SophiesMum Mon 09-Jul-12 08:48:58

Just been reading some of the messages on dementia. Earlier this year my Mum was diagnosed with vascular dementia. Mum still manages to live on her own, we visit regularly and take her out, and ring her daily. Her world is shrinking though, and she can't go very far on her own. We regularly have to clear out her fridge as she 'forgets' to throw away food which is past it's sell by date (sometimes well past!) Her flat is full of little notes, which she writes to remind herself of things she needs to do. She seems to fill her day with lots of little jobs which she then repeats later on.

However, I am filled with anger. Not with Mum, but with the 'system' From taking Mum to the GP last year when my sister and I realised that something was wrong, to her receiving her diagnosis - was almost nine months. To add insult to injury, when she received her diagnosis, the Consultant didn't sit facing us, but sideways on - appearing not to give us her full attention - not very professional at all. (They also kept us waiting an hour after our appointment time) We were told she would be prescribed something to slow the dementia down and this would appear in her dosette (which she collected weekly from the chemist) It took nearly a month for this to happen, and only then because my sister and I badgered the Consultant, the GP and the chemist, and it was only the chemist (who knew my Mum) that got through the tangled chain. The problem, though, did start with the Consultant and her Secretary, who sat on the prescription. Don't these people realise what stress and anxiety families and carers go through at times like these. To them you are just another case, to you it's your Mum and... well - it's everything. On a positive note Age UK have been absolutely wonderful, the help and advice, and the group she attends weekly are a godsend - what an organisation. If you need help and have not used them, please - I urge you - contact Age UK.

Just one more thing, we are very lucky that Mum is happy, we know this may not last and she can only deteriorate but at the moment she is in a good place. It does seem to me though, that the elderly and mentally frail are at the bottom of the list in the health service - that needs to change - and soon.

Ella46 Mon 09-Jul-12 09:40:11

(((hugs))) to all of you caring for family, it is so upsetting to see them deteriorate. Mine have both gone now and although it's a relief, I still miss them so much.

Sbagran Mon 09-Jul-12 14:17:56

Oh Sophiesmum I am sending you (((hugs))) and flowers as I so agree with you about the so-called professionals not listening to those who really know the patient.
Prior to my Mum going into residential care she used to declare she had 'lost her fingerprints' as mugs of tea, drinking glasses etc used to slip through her fingers spilling their contents onto her lap.
I had been telling the doctor for months that she had been falling asleep at the most inappropriate times but was always being fobbed off, being told that at her age she was entitled to have a doze in the afternoons or whatever!
How patronising was that - it was certainly far more than her having a doze - we've all done that - I knew it was more of a problem than that.
Mum continued to insist she had lost her fingerprints which was why the glass or mugs slipped through her hands - I knew it was because she was falling asleep. The doctor even arranged for her to have a carpel tunnel injection to cure it!
When the time came - she was admitted into care as an emergency, and under a different doctor, it all came to light - she was deficient in Vitamin B12 - it was that causing her sleeping and all her fingerprints were intact!
A three-monthly B12 injection cured it - if we had been listened to Mum would have had a far better quality of life WITH her fingerprints and without the unnecessary carpel tunnel injection.
I send all my love to those caring for loved ones - my Mum has gone now but once she received the correct treatment she had a better quality of life for the time she had left.
If they fob you off, and you are sure, keep pressing for them to listen.
Good luck everyone!

NanaAnna Wed 11-Jul-12 07:19:29

So sorry Westieyaya to hear about your husband. There are lots of posts about mums and dementia, and I didn't mean to downgrade these as i know what it's like to lose a mother to a condition like this.

But it's a whole different ball game when it's a husband or wife. You sort of expect to have someone there to share your retirement years with and instead they 'leave' you bit by bit.

It's bad enough trying to get a diagnosis in the first place and often your children don't believe you when you say there is something wrong as they are not involved in the day to day living with the person. Even the young doctor tried to say I was imagining it (how dared he) until the results of the brain scan came through. I was so cross.

I hope you get the help and support you need.