Mum diagnosed with Alzheimer’s

[Alibaba80]

My mum was initially assessed in July 2017 scoring 56/100 on the ACE111 test. She then had a CT scan and finally had a consultation in February which diagnosed Alzheimer’s dementia. I wasn’t surprised as there has clearly been a problem for years but my Dad died in June 2017 and so the problem became more obvious.
I have taken over full control of her finances, employed a gardener and a cleaner through Age Uk. Mum is fine when at home, can dress herself and cook ok but she’s had her driving license revoked so relies on me doing an online shopping order and her sister taking her to local shops once a week. But she has already been a victim of fraud which we thankfully intercepted and recently invited a loft insulation company in to give her a quote so I am very worried about her safety at home.
I live in Somerset so only see her every 5-6 weeks but ring her twice a week. She finds conversation very hard because her memory is so bad she writes everything down. I am an only child and she has no other family (other than her sister) nearby or friends to help. Her house desperately needs decorating but I can’t see how I can do this from Somerset or without causing mum distress.

I am still grieving for my Dad so have found this new situation extremely difficult and worry about my Mum’s safety and the future.

 

[margherita]

It sounds like your mum won't be able to live on her own in a not distant future.
What decisions do you think you could make before the situation gets unmanageable?
We should always try to hope for the better and be ready for the worse.
I'm afraid I do not have practical suggestions, but most TP members living in the UK will help you as soon as they read your post

 

[carolynp]

Dear@Alibaba80 this must be terribly hard on top of your father’s death. If I understand correctly, you are still in your first year of grieving?
I agree with @margherita that steps to safeguard your mother, and organise her future, will need to be taken before too long.
I am wondering, though, if you could allow yourself a few months more before you begin. Could you set a deadline, maybe even of July this year, at the end of which time you will begin to start planning what to do? It will always be hard, regardless - but offering yourself a few months’ grace before you embark on planning your mother’s future may make the process more bearable when the time comes. At present, as you say, you are grieving and do not feel ready. It may be good to acknowledge that feeling - and then, at the end of July, or whenever seems manageable, make a start. It will still be very hard -but you’ll have given yourself some precious time, and taken your feelings seriously.
Given the distance, both the planning AND your own readiness to embark on the tough decisions for your mother, need to be given serious weight. Your own energy ( grieving being so physically exhausting!) will have to be conserved.
How do you get on with your mother’s sister? Would it be possible to say to her that you know she’s being a great help - and that if she can just keep on till the end of July ( or whenever), you will then start making more permanent plans? Then she would know there is a time limit for herself too, after which you will call in the cavalry. Whatever you decide, be kind to yourself; and if it is at all possible to do so, take up the reins of your mother’s life slowly, letting your grieving have its way in the meantime, and run its course. Very best wishes, Carolyn.

 

[Alibaba80]

Thank you both for your kind words. Yes Dad only died (completely unexpectedly) 8 months ago. I have found life very hard since then as I have had to take over so much of Mum’s life and force her to get a diagnosis. Living so far away (she in Sussex and me in Somerset) has been a challenge too, especially as I have two children aged 6 and 2 years old and work part time.
I like the idea of giving myself a deadline, if we can muddle through until July that would mean we have done a year without Dad. The problem is I don’t know what the decisions are that I need to make. Mum is fine and cooking (well warming ready meals!) and getting herself dressed, she’s ok in her own bubble! But she can’t cope with change or anything unexpected happening and doesn’t seem to understand the dangers of talking to strangers so I’m not sure how to protect her. I’m sure she would hate to leave her home but it’s falling apart around her. I do get on well with my Aunt but she is 74 and not in great health so I feel that all the decisions are up to me. I was the one who contacted a nurse in the first place to get my Mum assessed which led to her driving license being revoked which my Aunt or cousins weren’t pleased about because they didn’t think there was anything wrong with Mum. Which is why her diagnosis was such a relief.

 

[carolynp]

Dear Alibaba80, you have so much on your plate and are doing so well! Getting your mother's diagnosis, and hence the revocation of her driving licence, has been a HUGE step to protect her (never mind resentfulness on others' part! What did they want her to do? Have an accident?). In other words, while I can see you are in a turmoil about how to protect your mother, and the thoughts are flying around in your head, you are ALREADY doing it, one step at a time. With working, and with your young children, you must try to take a breather, if you can, for a while. The diagnosis and the driving are very big things to have sorted out; and you've only just done so. Give yourself a pat on the back. Several pats. MANY pats. Trust that your mother will manage till July. Grant yourself your first year of loss of your dear father, especially given his death was so unexpected. End of sermon! But I'm sending you loving thoughts, Carolyn.

 

[Alibaba80]

Thank you Caroline, kind words were just what I needed! I am a very organised person and find this situation incredibly hard because I can’t control it! You are right that I have achieved a lot in a short space of time. Best wishes, Ali

 

[carolynp]

Thank you Caroline, kind words were just what I needed! I am a very organised person and find this situation incredibly hard because I can’t control it! You are right that I have achieved a lot in a short space of time. Best wishes, Ali

I too am very organised and my husband's dementia is having the same effect on me as your mother's situation is on you: I need to be able to control things and I can't control this! It's driving me mad! Taking a step back is just SO hard, though I am good at telling others to do it! All the very best, Carolyn.

 

[canary]

It is very difficult to live a long way away.
Does your mum have a trusted friend who visits her regularly and could be your eyes and ears? If so, this could be a way for you to know what is going on.

PS, sorry to add more to your to-do list, but have you got POA for your mum? If not, now would definitely be the time to do it before it is too late.

 

[Alibaba80]

Thank you. No not really, she has friends who we see every now and then when I arrange to see them but they don’t contact Mum at other times. There isn’t anyone that I can ask.
Yes we got POA financial and health just after my dad died, although I don’t think she really knew what she was signing even then!