Mum has just been diagnosed and we are all struggling

(16 Posts)
Afternooninthepark Mon 22-Oct-18 12:07:52

My lovely mum is 75 and has not been right for some time when it comes to her memory. After lots of gp appointments eventually she had a memory test and ct scan which has showed early stages of Alzheimer’s.
My dad, sis and myself (and of course mum) are all at a bit of a loss. Mum’s memory can be great for a week or so then really quite forgetful. Like this weekend, Saturday my sis and I took her out. When sis spoke to her on Sunday, she had completely forgotten sis had come and told her I had taken her out for the day.
We are all worried and overwhelmed tbh, the memory clinic gave her the diagnosis, medication and sent her off with an overwhelming amount of leaflets and booklets (a ridiculous amount for someone with memory issues imo).
I’m so worried she will go downhill fast and we are all anxious about the future as it looks so grim!

OP’s posts: |
WarlocksAreLocks Mon 22-Oct-18 12:10:43

The age UK and Alzheimers society have really good websites with lots of info you might find useful.

Is there anything in particular you are worried about? I'd strongly recommend her setting up POA now while she is able to, because the alternative (deputy shop) is much more of a pita.

chrissie28 Tue 23-Oct-18 15:53:18

I agree with the above info Power of attorney online now i will put the link on for the cheapest and easiest way to do this through the Government website (a solicitor charges hundreds) and their helpline is very good too. I also run a group on facebook for families and carers of people with dementia and we have both carers and professionals (dementia nurse, OT etc) all happy to listen and help and support www.facebook.com/groups/dementiaconnection/

chrissie28 Tue 23-Oct-18 15:54:13

This is the power of attorney - very straightforward www.gov.uk/power-of-attorney

Notverygrownup Tue 23-Oct-18 16:12:44

Yy to power of attorney - "only" £82 and will save you lots of stress later on.

Hugs. You are at the start of a tough journey but you will get lots of support and help here. And I too have found the Alzheimer's Society helpline great with silly little questions or great big ones.

My mum was diagnosed 9 years ago, so certainly hasn't gone downhill quickly. I spent the first 8 of those trying to get her and dad to move house closer to me. I am so glad that I didn't as now, she is still semi independent in her own home - she can turn the telly on and off, go to the loo on her own, go to bed if she's tired. When she has visited us, or when she had to have a stay in a care home after a fall, she lost all independence, and forgot even the basics. Back home she soon remembered how to do them. If you do want to move your mum, do it sooner rather than later, so that she can build up a familiarity with the layout of her new home.

After diagnosis, mum's council did a carer's assessment for me and offered me practical support which was brilliant in a crisis.

Enjoy the time you have together. Up until last year, we still went on shopping trips together, and giggled a lot. Her sense of humour has remained the same, so as long as I stick to the same jokes we have always shared, she still remembers that they are funny! We have had our dark days, but we are blessed that she is not in pain (she has lived in dread of dying painfully since nursing her own father through a painful and distressing illness, and I am so relieved that her worst fears have not come true.) Dementia does pose lots and lots of challenges, but it can be managed, if you are a close family able to help each other and to access outside support too.

Finally, look after your dad lots. Help him to have a break from her, and try to help him not to feel guilty if he is getting stressed. It is very frustrating at times, so just recognising that for him can help. One feature of dementia can be obsessively remembering certain things, and asking the same question over and over. I used to have a reminder on my phone saying "Get angry with the illness, not the person!" and it would pop up daily, just when I was feeling stressed.

Oh, one other important thing. People with dementia can, with patience, learn new things. I bought Mum a Dementia clock, which is fab - will try to link to it. Best thing I have ever bought. But I had to teach her how to use a digital clock.

And finally, finally be aware that Christmas can be a particularly difficult time for people with dementia. Homes look different with decorations up. Routine can change over the holidays (and routine is very very helpful). People whom you may not remember can send you cards and you feel guilty or confused about how to reply, then suddenly there are presents to think about too. We have coped by putting up fewer decorations and doing so over a long period of time rather than doing it all in one go; asking friends to cut back on card sending (or I hide some of them, so that they just have a manageable few up) and keeping Christmas day very gentle.

HTH. You will get lots of other advice on here. Keep posting

Millipedewithherfeetup Tue 23-Oct-18 16:14:59

It can be overwhelming for families to come to terms with this...the struggle we found as a family was just getting the proper care there seems to be a lot of ppl 'dealing' with various things but no one in charge of the whole thing iyswim. The power of attorney is a must I think...this will also enable you to talk to GP's etc. Wishing you all the best Op it's a difficult road ahead...try your best to spend quality time together now x

Notverygrownup Tue 23-Oct-18 16:15:17

Oops sorry. Essay there!

This was our dementia clock, which has been worth it's weight in gold. dementia clock

We also made mum a simple calendar to keep next to it, which she consults several times a day to see if she should be doing anything today. She still loves them, even though she no longer goes out.

Advertisement

cojmum Tue 23-Oct-18 18:04:45

Contact your local Carers charity and they will help you with everything from power of attorney to care packages if/when you need them, finances, social groups ect

Blogwoman Tue 23-Oct-18 18:15:46

Hi OP. Totally understand the feelings of being overwhelmed (my DM recently diagnosed) & agree with others there’s lots of info & support here so keep posting! I know you’ve been given a lot to read (or your DM has) but would highly recommend Wendy Mitchell’s book, Somebody I Used To Know; Wendy has early onset Alzheimer’s & her daily blog became this book. Lots of insights into how it is for her, & I gleaned practical tips that were worth trying for DM. My sister found the book ‘Contented Dementia’ particularly helpful for its photo album analogy to explain the process of memory loss in dementia. And yes yes to sorting power of attorney ASAP. Also consider an advance decision - requires some tough conversation but will enable your DM to make some choices about how much intervention she would want to keep her alive if she was seriously ill/at the end of her life. Making decisions as our DM’s attorneys feels much better for me & my sisters because we had conversations with DM about her wishes & priorities.

chrissie28 Tue 23-Oct-18 18:56:51

I agree re your local carers charity - they are very good and often run carers cafes where you can meet local people caring for family members - ours was my lifeline - lots of local info about what is good to tap into and what is a waste of time x
There are some decent books around but to be honest there is so much info on the net now - the only two I found both funny and sad and very easy to read where The Little Girl in the Radiator and Knickers in the Fridge

GreyhoundzRool Wed 31-Oct-18 05:59:25

Hello - I’m sorry to hear of your mum’s diagnosis OP. My mum has also been suffering with her memory for a while now and we had an appointment at the hospital yesterday. The doctor thought she may have had a stroke but she had a scan and nothing showing other than some small vessel disease which I think is fairly normal for the elderly ?

Anyway they think she has vascular dementia so I am reeling a bit at the moment same as you. Unfortunately there is only me to deal with it all ( no siblings and my dad died years ago). I’m definitely going to get a clock as mentioned earlier

My thoughts are with you

MereDintofPandiculation Wed 31-Oct-18 10:36:02

This was our dementia clock, which has been worth it's weight in gold. dementia clock How did your mum get on with the idiosyncratic spelling "Mornig"?

chrissie28 Wed 31-Oct-18 16:18:23

Brilliant observation Meredintofpandiculation - dementia clocks have a very limited life - it is the concept of time that goes not the reading of the clock

MereDintofPandiculation Thu 01-Nov-18 11:38:02

@chrissie28 It was a genuine question, I wasn't trying to be snarky, the advert explained carefully how one advantage was that it spelt the words in full, because dementia patients find it easier to understand the full word not the abbreviation, and I wondered how they got on with mis-spellings.

I had wondered whether children's clocks would be any use, the ones that show dark blue or lightblue/sun depending on whether it's night or day.Particularly in winter it's easy to be disorientated when you wake at "6" in a dark room.

chrissie28 Thu 01-Nov-18 11:42:53

I agree i wasn't being awkward - i just thought it was well observed - i only read what i wanted to see

MereDintofPandiculation Fri 02-Nov-18 09:51:04

Sorry @Chrissie28 - not used to such praise!

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