From First Signs of Dementia to Care Home – A Journey

[sussexsue]

This is a bit of any essay, and does not warrant responses, but I just wanted to share an Alzheimers journey that is one of the easier ones. It is more for people who have just had a diagnosis, to show that each person is different and you may be lucky and not experience some of the worst behaviours that others on here have to deal with. This is the story of my mum who is 87 and moved into a Care Home 2 months ago.

My Dad died aged 69 in 1991, very suddenly and unexpectedly. Mum was 67 and for the next 11 years she managed on her own – not happy, but surviving. Probably around 2002 we started to notice small changes, the usual stuff of repeated conversations, losing things, etc. However by 2005 we realised it was more than just the natural ageing process and following tests she was diagnosed with Alzheimers. Because my brother lived close by and she had good neighbours, mum was able to carry on living in her own home for the next 3 years. As well as holding down a busy job my brother also had to do her shopping for her, keep an eye out, and of course almost daily fix the things she declared were broken (washing machine, TV, etc).

In 2008 we as a family agreed that mum could no longer carry on living as she was. The food wasn’t being eaten, she looked thin, ill and spent much of the day in bed feeling sick and off-balance (we later realised that her one glass of wine a day was actually several, although she never realised and the off-balance was probably a hangover). She was also only eating toast and biscuits. Although clothes rarely got changed she still always looked smart, fully made up, hair done and her house immaculate. Looking back now I am surprised we never thought of getting carers in, but TBH it just didn’t occur to us. We thought about moving her to sheltered housing even closer to my brother, but felt she would struggle to adapt to an unfamiliar environment and would actually make her confusion worse.

OH and I were discussing the dilemma and I suddenly said that in an ideal world I would have my poor mum come and live with us. To my surprise he instantly agreed that he thought it was the right thing. Mum was very keen on the idea and a few months later we sold houses, moved to the country and mum came to live with us, our two grown up daughters and a few horses and other assorted pets. We added an annexe so that we could live slightly separately. Only then did we truly realise just how much this disease had destroyed my mum. She became very dependent on us, always confused and couldn’t ever be left alone as she had no idea where she was or how to do anything, apart from making tea and burnt toast !! Fortunately she has never shown any aggressive or nasty behaviour.

During the next 3 and a half years she followed a natural decline and loss of abilities. She was still able to dress herself, mostly continent, but little else. She went to Day Care 2 days a week, but that was our only freedom. She suffered several UTI s, falls and periods in hospital, which I found very scary. Fortunately it was only when she had a UTI that I had to do any “personal” care, but she was always too ill to cause either of us any embarrassment.

When I hear of all the problems others on here go through I realise that we have been very lucky. However even caring for an easy dementia sufferer takes its toll and last November I pretty much broke down with the stress of it all. Her 24/7 dependence of being with me and constant questioning proved too much. I think we knew it was coming as we had just visited a lot of Care Homes with a view to respite. Mum would be self-funding so at no point have we ever had any dealings with SS or CPNs. When mum first moved in I had presumed I would look after her till her physical needs became such that I could no longer manage. However I will be honest it got to the point when after over 3 years I knew I needed to get my life back.

We found the right CH and on the day I totally flipped they said she could come the next day. We just took her to the CH and once there and said that we needed to go and look after my in-laws for a couple of weeks and she would be staying there as we couldn’t leave her on her own. She wasn’t happy, but too confused to do anything about it. She kept asking what the place was and we just said it was a hotel for older people with staff who would help her. Fortunately because she doesn’t wander and still had very good social skills she was able to move into the Residential side as opposed to the Dementia Unit.

It was initially for respite, with a view to regular respite periods and eventually full time care. However she settled in so well, that both the CH and her Alzheimer’s Day Care suggested that was it really a good idea to keep moving her in and out when we all knew that it would not be that long before it would be full time. It is a lovely CH, beautiful setting, all on one level so she has the freedom to move from her room to the lounges, conservatories, gardens, etc. Do I feel Guilty? A bit, but I know I have given her 3 years of care and safety and found the right place for the rest of her days. I still visit every other day, so haven’t totally given up on caring. Mum has had Alzheimers for over 9 years now, and although it is an awful disease I feel it has been relatively kind to her. She had her 6 month assessment this week and is still scoring 16 which amazes everyone as it seems totally at odds with her normal abilities and understanding. Who knows what the future holds.

Sue

 

[Grannie G]

Thank you Sue.

 

[nita]

Sue, thank you for sharing your story. It is one of the more heartening (if you can say that about this disease) stories in that your mother doesn't appear to be suffering too much.

When you say she still has very good social skills, does she communicate with the other residents and staff? or do you mean that she isn't blunt or rude as patients can get when they become disinhibited? I am wondering because I realise that sufferers often eventually have to go into a specialised dementia unit. (At the moment my mother is in a mixed CH.) I suppose there are many types of aberrant behaviour that warrant such a move?

 

[sussexsue]

When you say she still has very good social skills, does she communicate with the other residents and staff?

Certainly with the staff she always smiles at them, says please and thank you, and shows gratitude for how they look after her. She talks very articulately. For example, if asked "how are you", she will smile and reply "oh I'm fine, but then I am never ill". She will talk to other residents and even start conversations, but couldnt answer questions and will say the same thing to them repeatedly. For the first 5 minutes of talking to her, you would not guess she has dementia. She struggles more with conversation from about 3:00 pm when she is more confused and loses language. When we visit she will often offer to make us a cup of tea - not that she has a clue where or how to do so.

 

[nita]

Your mother sounds delightful! She has certainly retained all the social niceties and that must make such a difference to her (and you). I think it must be true that part of the person's personality comes out, albeit in a slightly different form.

 

[hollycat]

Many thanks for sharing, it is a lovely example for us all to read and note.

As you know, OH and I have moved in with mum.

Will keep your story close at hand for our future reference.

By the way, in my first post on her, I was advised to read

Andrea Gillies - Keeper

ANYBODY thinking of moving their parents into their home, or moving in with them, please do yourself a massive favour and read it.....it is brilliant.

Many thanks again

 

[Meercat]

Thanks Sue - your story has really helped.
A room became available for our M in a CH and we had to make the decision that it was in her best interests to go now rather than end up in an alternative CH that was less suitable in the future.
Since being in the CH, it has become apparent the she is partially incontinent - she has accepted and asked for help from the carers but had refused any attempts from family to help with anything personal.
It has meant she has kept private what, in her eyes, needs to be kept private from us - retaining her dignity and we can visit and have a pleasant time rather than constant worry whether she is clean, has changed her clothes etc

 

[Necion]

Thank you Sue, to read your story is very heartening.

Lots of love to all, Necion. xx

 

[sussexsue]

By the way, in my first post on her, I was advised to read

Andrea Gillies - Keeper

Just downloaded it onto my kindle, and will be my next read.

 

[sussexsue]

Since being in the CH, it has become apparent the she is partially incontinent - she has accepted and asked for help from the carers but had refused any attempts from family to help with anything personal.
It has meant she has kept private what, in her eyes, needs to be kept private from us - retaining her dignity and we can visit and have a pleasant time rather than constant worry whether she is clean, has changed her clothes etc

You know, until you pointed it out I hadnt realised, but my mum is actually the same. Just little accidents and struggling to wash and dress, but not wanting to ask for my help. When she first went in they pretty much left her to it to see what she could manage, but within a few days they started helping her and now she waits for someone to come and help her get washed and dressed. They know she likes to look smart, jewellery and lipstick and every day I visit she is made up, different clothes, different jewellery - it is lovely to see.

 

[Grannie G]

They know she likes to look smart, jewellery and lipstick and every day I visit she is made up, different clothes, different jewellery - it is lovely to see.

IT is so good to know this Sue. It makes such a difference.

 

[hollycat]

Just downloaded it onto my kindle, and will be my next read.

really hope you enjoy it. we had the added twist that we used to live on a remote scottish island. this will become clear as you read. please come back and tell us what you think of it.

 

[Jimbob1208]

Thank you Sue for sharing your experience.

My two brothers and I have had a similar experience over the past year with both our Mum and Dad for different reasons, and whilst it was one of the hardest decision we have had to make, on reflection it has been the best decision we have made for all.

My Dad has suffered from severe depression since 1998 and Mum has always been his crutch ever since, so when she started to succumb to Alzheimer's it had the added problem of impacting on Dad's health too as he found it impossible to cope with his own mental health and also the role reversal of having to become a carer for his wife.

The past 18 months have been a real roller coaster and one I would not wish on anyone. Seeing Dad suffer with depression and what I would also describe as a grieving process at having lost the wife he once had and also my brothers and I loosing the Mum we knew, plus having to arrange for both to go in to a care home.

Thankfully, we were very luck to find a fantastic care home and staff who are able to take care of both Mum and Dad (both in the same care home).

Would I want Mum and Dad back home, yes of course, I would give my right arm to be able to make that possible. However, I have come to learn that you can either spend each day wishing for what use to be or spend each day making the most of the parent we all love and adore.

Since Mum and Dad moved in to care the rest of the family have got their life back. We are less stressed and worry less about all the things you worry about when vulnerable parents are living in their own home.

As a result I consider that my brothers and I now have quality time with our parents and an opportunity to really mack the most of every minute we spend with them. Before they moved in to care, we also clung to the hope that we might be able to keep them in their own home and out of care by taking it in turns to live in with them at their home. However, it wasn't until we did this that we fully appreciated just how demanding it is to look after someone with Alzheimer's, despite making all the usual arrangements (such as door chimes etc) to make caring for them easier. It is truly hard work and one is always looking for the opportunity for a break and a rest.

Now, rather than looking for opportunities to have a rest from my parents, I look for opportunities to go and see them, which is how I think it should be.

Whilst difficult, unwanted and heartbreaking, I feel 100% that everyone benefits when the care for your parents is given to those who are able to meet their needs 24/7 and it enables us to have 100% quality time with our parents now.

 

[Julia58]

Sue thankyou so much for sharing your story with us all.
What a loving and caring daughter you are.
Hugs x

 

[haggis1938]

Why is dementia not classed a major illness? Why know action?

SINCE MY WIFE WAS FIRST DIAGNOSED RECENTLY , I FIND THERE IS A WAITING LIST IN MY HOMETOWN OF GREENOCK SCOTLAND FOR HELP? HOW CAN THIS BE , IAM AMAZED ALSO THERE IS KNOW PLAN -B AND KNOW EXPERIECED STAFF TO CARE FOR THE EPIDEMIC HITTING GREENOCK? THAT IN TOP OF CANCER AND OTHER MAJOR ILLNESSES? ALREADY KILLING MANY ? AS A HEALTH ACTIVIST AND CANDIDATE FOR OUR LOCAL ELECTIONS IN MAY , IF ELECTED HEALTH OF OUR TOWN WILL BE MY NUMBER ONE AGENDER , ALREADY STILL GRIEVING MY ONLY DAUGHTER BARBARA AND YOUNGER BROTHER TO CANCER, NOW TRYING TO SAVE MY LOVING WIFE BETTY OF 54 YRS FROM VASCULAR DEMENTIA ? SO MUCH I HAVE CONTACTED MSP NICOLA STURGEON REGARDING ? BUT KNOW REACTION FORTHWITH? COUNCILOR PETER CAMPBELL UKIP SKYS THE LIMIT AND SCOTSPETER CHANNEL ON YOUTUBE

 

[Buddy]

My Wonderful Mum and Dad

My Mum has suffered with Alzheimers for 8 years now. We were fortunate to be able to move both my Mum and Dad in with us when she was diagnosed. They live in an attached granny flat. Since day one my Dad has been her constant companion and does a fantastic job supporting, caring,prompting,loving her. As a family we have strived to include them both in everything that we do. My Mum is a real comedian, constantly laughing and cheerful. She is very confused now and unable to to do most tasks although she will iron anything (sometimes things that she shouldn't). Her mobility is deterioating and my Dad has heart failure and prostate cancer, so both are becoming frail. We have had a real battle with services to get extra support but have managed to get some direct payment to give my Dad a break. Like Sue says it is extremely tiring and we are constantly on call and find it hard to get a break, although our children will often step in to help.
I know that soon we will have to make some hard decisions regarding my Mum's future particularly if my Dad becomes unwell and we have had some difficult conversations with him as he wants me to promise never to put her in a home.

We also have been lucky because my Mum remains a gentle, happy character and I feel grateful that we have been able to keep her with us for so long, I just hope that when the time comes we will be able to find somewhere that will care for her in the way she deserves.

 

[Hils21]

Dimentia to care home

Hello everyone,
This is my first time of writing.
My dad has been diagnosed as having dimentia with Lewy bodies. We have worked with social services to keep him in his own home for the last year but it has been very difficult since we live 90 miles away. He presents as a very smart gentleman but can't remember what has happened 10 minutes ago. Fortunately he remembers me.It has broken my heart to speak to him every day whilst he believes that that I am presenting the evening news on television and that the next door neighbours are breaking into his house and stealing his newspaper.
He has Had care three times a day but was taken into mental hospital in November 2011.Following numerous meetings with doctors, social services and CPN He is now going into a care home near to us which is a relief but why don't I feel relieved, just guilty?

 

[susanne1964]

thank you Sue for sharing so nice to hear a success story (or almost )

take care
Sue
x

 

[Traceych68]

Thanks for your story, I only hope it's the blueprint for my dad. The best of awful options. Thank you again.

 

[Tigress Twicker]

Wonder how it will be for us?

Certainly with the staff she always smiles at them, says please and thank you, and shows gratitude for how they look after her. She talks very articulately. For example, if asked "how are you", she will smile and reply "oh I'm fine, but then I am never ill". She will talk to other residents and even start conversations, but couldnt answer questions and will say the same thing to them repeatedly. For the first 5 minutes of talking to her, you would not guess she has dementia. She struggles more with conversation from about 3:00 pm when she is more confused and loses language. When we visit she will often offer to make us a cup of tea - not that she has a clue where or how to do so.

My husband has had dementia diagnosed since 2008 - he is only 70 now. I can't say he has good social skills - he varies; he is polite, but withdrawn and often negative with others, even myself ["I don't want... [- and a long list]"] . He lives at home with me & an adult son, and is very dependent on me. At present we are not looking at getting him into a home - maybe another 10 years if he is still alive? Today I embarked on the first step towards assisted care, self-funded - I am paying a carer to come in for 1 morning a week, so I can have a ring-fenced free slot without worrying about getting back. He is resistant to this, and came in where I was meeting the new carer, saying he did not want anyone to be here - my answer is that I need a break, and we will persist and see how it goes. She is due to start next week; apparently this is common. [I am about to apply for a health LPA in his name; have done finance one.]

My hubby often says he is afraid of going into a residential home - "somewhere else" - but this is not an immediate prospect. However I see it as a future option. I will not ruin my health by caring for his every physical need,a dn paying carers must be alsomost as costly as residence. I am concerned about finding the right kind of home - also that he is younger than many others with the disease [I see there is a thread on this too]. At present he suffers from physical pain [kidney stones], which worsens his dementia & confusion, but is continent, and does not wander off - plus usually sleeps through the night. He's had the odd lapse in that - also once or twice he's got lost looking for the loo, a new development! My adult son with lives with us, but he can't take on a caring role, as he has mental health problems [I am also his carer, but less hands on]. He does "sit in" if I go out any evening, which is now very rare, as my husband gets anxious, also about my own safety.
You were also lucky to find a decent, suitable home straight away - I've heard this can be difficult, and some people have to change the homes they are using / living in.