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New here and saying hello

mumskids

New member
Apr 21, 2021
2
0
Hello everyone,

New to this so not sure how much to put on - There are four siblings behind this username, we’re on here because our mum was diagnosed with Mixed Dementia last October. My mum lives with my sister and her four children, (one at uni, one at collage, 2 at primary school). You can imagine things get a little heated at times and although we all help as much as we can, its our sister that takes the brunt.

Our mum is 85 (86 next month) and seems to have lost all sense of time, smell, taste, memory and most tragically, self pride. This represents itself from waking up at 03:00 and waking everyone up or still awake at 01:00, constant eating (if we let her), not wanting to change her cloths, etc. She is on medication which thankfully controls her moods, prior to that, she could get very paranoid and aggressive. From what we understand about dementia, is that this is common, but still hard to see our mum in this state. Also she seems to have reverted back in time and regularly calls for her mum and her own siblings, again very sad to hear. I’ve asked if she’s in pain or in distress, she says no, just calling for them.

The big problem is her memory, this is most evident with food. She no sooner has finished eating (breakfast, lunch, dinner) and within minutes is asking for food and when we say she’s just eaten, she says she hasn’t.

If anyone has any advise on any of the points above, we would be very glad to hear from you :)
 

Sarasa

Volunteer Host
Apr 13, 2018
2,888
0
Hi @mumskids and welcome to Dementia Talking Point. All the things you've mentioned are very common with dementia, and your sister must be beginning to feel run ragged if she is coping with the demands of her mother and those of her children too.
Does your mother have carers coming in at all? If she doesn't now might be the time to start introducing them. If your mother would be self-funding (having over £23,500) in savings you could just find a good company and get that started. If she wouldn't be self-funding I'd contact social services and ask for a needs assessment for your mother and a carer's assessment for your sister.
Does anyone have Power of Attorney? It sounds that if you haven't your mother might be beyond agreeing to one, but you could apply to become her deputy. This Government site explains it all.
I'm also wondering if it is time to start considering a move to a care home. I know this is something families are often reluctant to do, but sometime the person with dementia (PWD) does much better in an environment where there is a routine and lots of carers on hand. Due to covid finding a home and visiting will be more difficult than it was, but things are easing off and hopefully care homes will be more open shortly.
I'm sure other people will be along shortly with their ideas. This is a very supportive place and you'll get lots of support and advice.
 

karaokePete

Registered User
Jul 23, 2017
6,030
0
N Ireland
Hello @mumskids, you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.


Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

mumskids

New member
Apr 21, 2021
2
0
Hi karaokePete, thanks for your reply and advice. We will certainly have a look around. We have PoA & wills in place, so I guess that's a couple of things ticked off the list
 

karaokePete

Registered User
Jul 23, 2017
6,030
0
N Ireland
Hi karaokePete, thanks for your reply and advice. We will certainly have a look around. We have PoA & wills in place, so I guess that's a couple of things ticked off the list
Yes, there's a busy period post diagnosis. Quite often people will suffer a kind of grief, known as anticipatory grief' after diagnosis but I found that throwing myself into getting our affairs in order removed that for me. After a while life settles into more of a routine as one learns the ropes, so to speak.

One thing I found most useful was reading as widely as possible as that has meant that when some new change occurs it hasn't thrown me. An example of that was the time, about a year ago, when my wife asked "Which Pere are you?" - I immediately thought, oh, the Capgras Delusion, and was able to deal with the situation very calmly.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,374
0
High Peak
Well there are 4 of you and you have PoA sorted - that's a great start!

As you say, your sister is taking the brunt of things at the moment, so I'd suggest you gear your efforts towards helping her. You could arrange carers for your mum or someone to help with cleaning, gardening, etc. One/some of you could take turns in having your mother over to stay or taking her out regularly - what your sister needs is regular breaks because she's dealing with your mum 24/7 (as well as her own family) and that's incredibly hard.

Ask your sister what would help, what the rest of you could do, and if she says she's OK, don't listen!
 

Sunshine2*

Registered User
May 16, 2019
100
0
Hello mumskids.
I think you are all doing a wonderful job in caring for your Mum and she is very fortunate in having a kind family.
However, I do agree with all the comments above. It must be very hard for you all, especially your sister; her children must be her priority and disturbed sleep is not good for anyone.
I speak from experience, I solely care for my husband (in his fifties) and ill for 31 years with Aplastic Anaemia, a brain haemorrhage, epilepsy, Multiple Sclerosis, a mini-stroke and MS Dementia. He has bowel accidents, has an indwelling catheter, is disabled and I am up 2-4 times a night with him. He has optic neuritis and nystagmus, constant repetitive questions and requires instant, constant attention day and night and gets very confused.
As others have said, your Mum needs lots of help from a variety of people and my advice would be some respite care too.
Once my husband has had his second jab and after a few weeks, I am hoping he can go into respite care for a few nights, just to catch up on sleep and get some jobs done in the garden/house. I have a number of health issues too, due to previously lifting him when his legs give way and the pushing of a six foot tall man in his wheelchair.
Prior to March 2020, he was going to a weekly four hour enjoyable break. Music therapy, quiz, conversation, arts and crafts and lunch. He wasn’t keen to go, but I could see the enjoyment and happiness in his face, when I went to pick him up. A wonderful place for both of us. Perhaps your Mum could attend something similar, when things are back up and running.
I hope things improve for you all. Keep posting, there are so many helpful, knowledgeable people on here. They have certainly helped me in the past.
Take care.