Dementia struggles

Share your ideas about the practical side of caring.
Hello folks, I am new to this but having read several posts so far, I am so glad to have found you.

My mother has dementia, she has been gradually getting worse over the past 4 years. My two main concerns are that 1 - my father is in almost denial, saying he has perfect conversations with mum when I am not there, and 2 - sometimes mum is more lucid that others.
How do I know what she understands and what she does not? This is such a wicked illness!

Mum is mostly incontinent now, so I am fairly sure she does not really understand what is happening, however she has almost lost the ability to speak, so talks with her eyes. I cannot bear it when she cries.

Is this part of the illness?

Thank you,
Pam
Hello Pamela
So sad to read your post.
My husband is in a nursing home because of strokes and vascular dementia.Sometimes I and my family can have really lucid conversations with him. We spoke of the election, he can still explain some laws to me etc etc. Then he will confabulate, ask me if I have seen his mom( she died many years ago). I could go on and on. I personally just go along with what he is saying, ie, no I haven't seen your mom, she can't come out in this weather, at the deaf club or whatever. I call them kind lies.
So yes, sadly what you ask is part of the wicked illness. Your dad being in denial is common too.
Do you get any help? Have you been in touch with the Alzheimer's society or Admiral nurses? You made find it beneficial.
Do keep posting, as lots will be able to support you.
Hi Pamela
wecome to the forum, I am sure you will it very useful and supportive.
I care for my father with dementia and one of the most frustrating things is that when Dad sees rest of the family he pulls himself together and appears as near normal as possible if not quieter than usual but when alone with me especially at night he can be completely potty and ask me things like where is his bed and can I find his slippers when he already has them on etc. People with dementia do seem to pull from some reserve sometimes and you may find it get worse at certain times of day (sundowning).
If you have not already found it I strongly recomend you also look at the Alzheimers forum called Talking Point. Do not be fooled by the name as all kinds of dementia are frequently discussed and not just Alzheimers. They also do an amazing collection of free downloads or information leaflets. If you can't find the right [age come back and ask- do go through all the links there are loads and loads of them on all sorts of things.
Dear Pet66 and Henrietta,

I am so grateful to you both for your replies. The forum is new to me, this is the first time I have discussed mums illness with people who can fully understand my feelings. I am relieved and struggling at the same time with what I read.

Thank you both again so much. Tonight has been a huge step for me but I will follow the links you have suggested and read more of the posts, there are so many and a lot of information to absorb.
Pam x
Henrietta wrote:Hi Pamela

If you have not already found it I strongly recomend you also look at the Alzheimers forum called Talking Point. Do not be fooled by the name as all kinds of dementia are frequently discussed and not just Alzheimers. .
here is the link
https://forum.alzheimers.org.uk/

We also have many discussions on this forum to. You can read them here
http://www.carersuk.org/forum/specific- ... s/dementia

Rosemary
( caring for hubby diagnosed 6 yrs ago with alzheimers aged 51 yrs old )

x x
Welcome to the Forum, Pamela. Glad you found us; many of us on the Forum are caring / have cared for people with dementia.

What you describe is, sadly, quite normal although no two dementia sufferers present in exactly the same way. Has your mother been officially diagnosed, and was any support offered? Some types of dementia present differently than others.

In my mum's case, she had mixed dementia (Vascular / Alzheimers). By the way, the Alzheimers society deals with all types of dementia despite its name. One tip I can give is to go into your mother's world, not expect her to come into yours. Don't contradict, it is easier to go along with her ...

Just ask away if you have any questions, or want to chat / vent. Normally there is someone around.

Take care, Anne
Hello Pam,
Welcome to the Forum and thank you for voicing your concerns. It is better to speak up rather than feeling you are supposed to go it alone just because you are a daughter. I can only suggest that your father's denial may be because he feels himself to blame or in some way responsible for your mother's dementia. Neither of which is true. I agree with the other responders who advise to try to stay in your mother's world as far as you're able, which I suspect is what your dad does. As far as the incontinence goes, it is what it is. Buy as many incontinence items as you can, and try not to be embarrassed. Do not be afraid of this condition as it worsens, you can be on top of things with guidance and support ok?
Welcome to the forum. Is mum in receipt of Attendance Allowance? Did you know that people with dementia are entirely exempt from Council tax on the grounds of "severe mental impairment"?