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Alzheimers Support Advice

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emmie | 15:01 Sat 04th Mar 2017 | Body & Soul
17 Answers
anyone have experience of a loved one with Alzheimers and can offer some
support and advice - my mother has developed this horrible disease.
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Very difficult time for you, my Mum has Vascular Dementia. Started with short term memory loss. She is in a specialist Care Home, so I have seen many going through it. No two people progress at the same speed, and they have many phases they go through, in no particular order. You will have many good times and many bad, and yes there are laughs along the way. A lot of...
15:20 Sat 04th Mar 2017
Question Author
have looked at Alzheimers association website but would appreciate any views.
you've seen these people? Sorry, I can't offer any personal advice. I hope you're well yourself.

https://www.alzheimers.org.uk/
ah, sorry, your post wasn't there when I started.
Question Author
it grim to say the least. she has no short term memory and one of the family is having to take up the slack.
Can't reAly help, my father had dementia and had no clue who I was. Showing him photos of the good old days was pointless as he didn't seem to be lurking in any particular era.

Good to see you back and I hope your own medical issues have been resolved.
Very difficult time for you, my Mum has Vascular Dementia. Started with short term memory loss. She is in a specialist Care Home, so I have seen many going through it. No two people progress at the same speed, and they have many phases they go through, in no particular order. You will have many good times and many bad, and yes there are laughs along the way. A lot of patience will be needed as you will keep being told the same thing over and over, I used to refer to Mums 'theme of the day'. Sadly she is now bedridden, cannot so anything for herself and cannot speak, with a failing swallowing reflex. It has taken 10 years to get to this stage though.
DTC may be along later, he cares for his Mum at home and would be able to contribute quite a lot.
what help have you been offered? Accept everything that you think may be useful and that your Mum will accept. If you haven't been offered any then talk to your Mum’s GP. If your Mum is being “difficult” about accepting outside help then get help to get her to accept it. I have been there both as a reli and a professional and I know how hard and heartbreaking it can be. If anyone tries to judge what you and your family are doing, tell them to pizz off.
Question Author
thanks for the advice, mum is 87 and has long term memory but short term is very very different, almost none.
seems sad after a lifetime of looking after family it ends like this. boo sucks as one might add.
Emmie I am so sorry to read about your mother but cannot help with your question as I have no experience of Alzheimers. But I do want to say it is lovely to see you posting again, I have often wondered if you were OK. I hope you stay.
Question Author
thanks to those welcome backs, much appreciated.
Can't offer any advice, just wanted to say hi, Emmie.
My MiL had this and for a while we ket her in her home , paying someone to get her up and do breakfast for her. She had someone dlivering lunch and we fed her dinner which I had cooked in batches and frozen. She went through a variety of stages, being vey loving and aggressive at different times. She forgot her son. She had her own home so with POA we rented it out and it helped pay for her care in a lovely care home...(there are some not very nice ones out there I have to say) The council were dreadful and gave no help as they seemed only to want money. It is very hard to live with..I wish you and your family well...there was only himself and me for his mum..that was hard at times. Hope it all goes well.
My nan had it. It's awful. One day she'd know who we were then the next she seen us as strangers.

The only option we had was to put her in a care home. It was simply too dangerous for her to stay at home.

Most of us had nan days where we'd pick her up and take her to see my granddad. Often she thought he was her dad. Other times she'd try snog him. It was sweet and very sad.

A truly horrible condition.
Yes, it's an awful way to finish a full and valuable life. Mum's got vascular dementia, so I can both empathise and sympathise!

On a practical note, if she still has some capacity, make sure that you have Lasting Power of Attorney sorted out both for finance and health and welfare. Without these, life becomes very difficult. My advice, too, is to make sure that you get 'joint and several' for most of these - it can be really difficult if you have to have a joint decision every time you want to buy her a new pair of knickers!

It's a good idea, too, to make sure that she's made her will and that there's a funeral plan in place. This is not because it's all 'doom and gloom', but eventually she will be unable to make these decisions for herself - much better if her affairs are in order now.

The person who is 'taking up the slack' is going to need a lot of support. Make sure that s/he has at least a day 'off' every week, for the sake of sanity, and get this in place now, so that your mother is used to the routine. Also, work out what's going to happen when that person needs a holiday. Talk to your relatives about what is going on - the disease often provokes friction and resentment in families, even when they have formerly been very close!

There should be/have been an assessment done on your mum's needs by a social worker. If this hasn't happened, make sure it does. This is where a care plan can be set up. If your Mum has savings, then she will likely be a self-funder. This means it's up to you to sort out the care. We found that going through an agency was much easier than going through the list that the local council provided for us. If we'd hired people ourselves, we would have been required to sort out their pay, their holiday entitlement and their pensions. An agency will do this for you - which is why it costs a bit more. Also, an agency should have carers who can cover for colleagues who are sick or on holiday. Ask around to find out which is the best care agency in your area and look at the CQC reports on those that are suggested. We found a newly set-up agency and that was great because they had no preconceptions about how the care would be delivered. We had one carer who used to take Mum to the hairdressers and 'Singing for the Brain', which she really enjoyed up to the time when she needed to go into a care home. If she doesn't have much in the way of savings, she will be funded by the council and they will decide what help she will get and from whom.

Care homes .... yes, depending on your mum's circumstances, she may well need to move into one of these at some point - possibly quite far into the future, possibly not so far. We had the diagnosis in October and Mum needed to move nine months later, for her own safety and the family's sanity! (She used to go out and forget why, get lost and eventually find her way back a three or four hours later; there would be days when she forgot to go to bed; she forgot how to wash and clean her teeth; she forgot how to use the phone!) Have a look at what's available in your area and, again, get personal recommendations as well as looking at the CQC.

There are phones you can get which you can put pictures on and put the relevant number in the memory, so that if she needs to talk to somebody, it's easy for her to get in contact. Have a look at the OwnFone, for example: https://www.myownfone.com/

Does she have a walk-in shower? This is likely to be come a necessity if she's to stay at home and a stairlift, if appropriate, is something else to think about.

Finally, AgeUK can be incredibly helpful - give them a call or look at their website, and you will get lots more advice at the Alzheimers.org 'Talking Point' forum https://forum.alzheimers.org.uk/?_ga=1.243731074.602638050.1488061276

Good luck - and remember, there will still be good times. Make the most of them!
Question Author
tefler
a relative has power of attorney, so that bit is sorted.
however she is deteriorating quite rapidly, her weight has gone right down, as she often refuses to eat. When i talk on the phone she sounds quite chipper, but when other relatives visit she goes on a tangent.
Question Author
she is mobile, however she spends most of the time loafing on the sofa watching or not watching tv.
In the area where Mum lives, there are quite a few clubs and things for people with dementia to go to. As I said, my mum loved the monthly 'singing for the brain'. There are also armchair exercises and lunch clubs. These can be helpful in providing an interest for the sufferer. Mum also used to like going out in my car for drives and a wander around a few shops. Problems with continence can make this a bit awkward - so I would go prepared with a bottle of water, disinfectant, a bucket, old cloths plastic to protect the car seat and spare clothes. The one time I needed the emergency kit I didn't have it!

Your Mum might eat more if she were taken out to, say, the local garden centre. Can she do jigsaw So? There are some good easy ones in the Alzheimer's.org shop.

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