mum has been diagnosed with Alzheimer's today

[Rosieteak]

Hi
My mother was diagnosed just around a year ago and it is so hard to understand how she will be. It was a shock ti hear the diagnosis of Alzheimers but mum took it ok ?! I was getting upto 17 calls a day on the phone .... only advice i can give is you will learn slowly how to cope something i now realise is mum lives “in the moment” and that has helped me quite a bit, she dosnt know what happened yesterday or this morning or even 10 minutes ago she only knows “now” !! She remembers when she was a little girl with her mummy and daddy but 60 years of marriage have gone and of my childhood, and i just have to accept things...very hard but i hope this helps you a little ? Xx please get in touch with your local adult social care to get a care needs assessment done the best advice i ever had then you can get a care plan organised and youll have someone to help and share with x

 

[gogo321]

Hi denzil. My sister and I have spent the last year coping with our mum's diminishing short-term memory. It really is almost non-existent now and we have slowly come to terms with the same question being asked over and over. Mum now can't recall anything that happened more than two minutes ago, but is able to recall lots of things from her childhood and early married life. Answering as if it is the first time the question has been asked is the best way forward ... it is sometimes really hard to do, but you just have to put yourself in their shoes for a moment and try to see it from her side.
We had the same issue with mum saying that no-one had been to see her, etc ... and then discovering that people had indeed been, but she had forgotten. If your family/friends have WhatsApp messenger, perhaps you could create a group that you are all members of. You could then post little updates as and when you have visited so that everyone would be kept in the loop. It might come in handy for other things too! It is better than just using text messaging, as you can have a conversation with everyone at once if you need to ... and also include photos which is sometimes fun if we have had a nice day with mum or been somewhere special.

 

[pinkwizard1]

I went through this in Nov 2017 even though another consultant lied in Sept saying nothing had been found on the CT scan, so am with you in queries etc.The best advice given to me was to step inside their minds and providing they're safe go with what they want/ask/do etc. There's no point in correcting them, would we like to be constantly chastised for not being bad? It's an illness not a deliberate forgetfulness or unawareness. My best words that I hang onto is not Mum forgetting but Mum is unaware. It's helps me keep sane and stops me getting mad, it also stops her feeling bad and keeping her happy. And yes, we're talking about a 97year old lady who remembers what we would like her to forget and vise versa but would be devastated if she thought she was living with mixed dementia and was a burden. She's now doubley incontinent, totally unaware of that, I just clear up and get on with life. She won't be here long and I've stepped into her world to keep her passive and happy, I then step out the back door and shout and scream. What does it matter if we keep answering their questions, think of it like the toddler that keeps asking why? Good luck but most of all accept the love and need they place on yoo

 

[AndreaP]

Mum started to go downill quite noticeably 4 years ago but was in a state of denial from which she never emerged. It took me 2 years to get her assessed for a nursing home because she refused and that was that. My only other recourse would have been to have her placed under a guardianship order by the state (I live in Australia) who would have declared her mentally incompetent. One day I caught her at a vulnerable moment - I said she should put her name down somewhere nice in case she had to go after a fall - and she agreed. I was on the phone straight away and they rang her to check she had agreed to an assessment. I prayed she had not forgotten in the hour that had passed. Then I had to wait 4 months for the assessment. Looking after her myself was not an option. I don't have the capacity, mentally or physically and mum was becoming quite abusive towards me. Getting in somewhere really nice was difficult and I was constantly on the phone badgering them I'm afraid. When a vacancy occurred it was really difficult to get her to go. Said it was a two week trial and she fought tooth and nail not to go. Eventually I had to say "mum I can't support you if you stay home". I still don't know how I managed to get her packed up and in there. She was terrified understandably and continually barricaded herself in her room at night with a small table and two chairs. She swore at me for placing her there. People were stealing from her she said and she kept wanting to phone the police. I would not allow a phone in her room for this reason. She liked the food but continually begged to go home. I said "when the doctor says okay" although her place had been sold. She was never truly settled and grew more and more frail. After a year she could no longer walk, then gradually grew less able to do anything. After 2 years and steady deterioration she was unable to walk, speak and eventually swallow. She was sedated and died a few days later. It is not like this for everyone; many are more amenable and less abusive. But it was a very trying experience and stressful for all concerned. And awful for mum, just horrendous and so sad.

 

[Aineb]

hi all I am new here and my mum got diagnosed today. I have been given loads of info leaflets but they all give practical advice. what I would like to know is what to expect. I know each person is different and symptoms and situations differ. but I really am at a loss as to what this means. she has had a really bad 12 month spending about 8 month in hospital after falls and breaking hips and shoulders. her memory has been failing for quite a while now she is repeating things a lot to the point she asked 27 times in 1 trip round the supermarket for the same item. do I just let it go or do I keep correcting her.

The short answer is to let go. Par for the course is repetitive questions but within 5 to 10 seconds the question is forgotten. There is no point in correcting, it only leads to confusion. Also don’t ask questions of your Mum guide her instead. In taking care of your Mum take care of yourself too. Carers need care.

 

[kimmykimbo]

Sorry to hear this. Its a cruel illness. My grandad is in the later stages. Its been a rough rocky road. First he was forgetting little things the early stages involed repeating things over and over (with good speech that made sence) then he started to forget how to make drinks how to undress himself and day to day tasks become more difficult. Frustration kicked in he knew he had the illness he didnt want it and was depressed angry and wanted to end his life himself. Then he progressed further repeated infections hospital stays. Then toilet accidents where he would forget how to go and ended up needing to be changed. He has now progressed to the point where hes incontinent he cannot do any daily tasks for himself. His meals have to be fed to him which can take an hour per meal. Drinks are hard to get down him. Mobility is reduced. He can stand and walk still. Hard to get him to follow instructions even getting him to sit down. I cannot understand many words he says, he has his own language. Hes happy enough in his own land. But theres been a lot of phases to go through. My nan has cared for him from the start, I feel its time for a home but its up to her to make that decision. A lot of tension has built up between the family. My nan has been a super star but she seems to be full of resentment and critisises careers and has a very short fuse. Its making family not want to go round. But we all try to stick together. Its hard going especially as the illness progresses and it changes the person they used to be. One day I hope for a cure because its by far the worst thing I have seen someone go through. Its a sad illness. Not necessarily for the person with Alzheimer's its for the family. Sorry I have rambled. X