Early days but already so stressed

[Commonpeople22]

Hello again. I posted on here a couple of months ago (then couldn't remember how to use the site.) I have both my husband and Mum with dementia and only nearby family are sister and brother in law, who are supportive but both work full time.
The official memory tests are this month.
My husband is needing me to "supervise" more but is doing OK.
Things are difficult with Mum. We are close but there are some issues in our relationship.
She has always been someone who needs to be "in charge". And of course no-one welcomes a dementia diagnosis. However, she is being very resistant to anything we've tried to put in place to help her with her very poor short term memory.
I can get anxious and agitated by her behaviour under normal circumstances, this was already going on this week. During the course of a phone call, I mentioned that she needs her hearing aid for the memory assessment. (She's had it for years, and refused to use it.) She wasn't rude, but very stroppy about it, to the point where I was getting upset and hung up the phone.
My sister keeps saying about "lots of patience",I know that, I'm ex NHS. I have real problems myself and my therapist has offered (when social services are contacted) to warn them of the issues between Mum and I which might make a caring role complicated in the future.
Realistically she is going to need my input at least some of the time in future.
I don't know if it's realistic or fair, but at the moment I feel like saying to her that I know she's under pressure, (as is my husband,)
but me and my sister are doing our best and she's got to help us to help her!

 

[Yankeeabroad]

Hi @Commonpeople22 and welcome.
it must be very hard to have to deal with both your husband and mom. Hats off as you seem to be very cognisant of the situation and issues.

Regarding your mom, is there someone with which you can split the emotional care of her? My sister and mom haven’t always had the best relationship and still have residuals. My sister and I work pretty much together but she always lets me be the bad guy (so to speak) with difficult decisions concerning my mom. Both of us are long distance (2.5 hour plane flight for her & circa 24 hours travel time for me) but find that professionals are able to work with us remotely when we ask. So for example, my sister and I worked together to get a caregiver system in place for my parents (both have dementia) initially. But I was the one to tell them they had to accept it or move to a care home (makes me the bad guy ?). My sister made the absolute decision that my mom had to go into a care home but I was the one to explain (&keep explaining). The thing here is that it’s easier for my mom to accept this type of information from me than my sister.

 

[Grannie G]

Hello @Commonpeople22

I mentioned that she needs her hearing aid for the memory assessment. (She's had it for years, and refused to use it.)

If your mum doesn't`t use her hearing aid, there is no point asking her to take it for her assessment. A hearing aid isn't something that can be used occasionally. If your mother had ever found it helpful she would have been happy to wear it. Just because a person has a hearing aid doesn't`t mean they find them helpful.

I say this to you with kindness and from personal experience.

This link might help you.

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

If your mother is used to being in control she is unlikely to step down because she has dementia. She is more likely to try to stand even firmer to hold on to her independence. It is one of the accusations my husband levelled at me, that I was trying to take away his independence.

All the reasoning in the world is not going to help.

The care I gave my mother, with whom I didn't`t have the best relationship was so different to the care I gave my husband. It was better for me because I had them at different stages in my life and my husband was well enough to help me care for my mother. Having them both with dementia at the same time is too much for anyone without help.

Please try to get a carers assessment for yourself to see what help will be available for you.

The carer's assessment: support for carers

This page looks at how a carer for a person with dementia can get a care assessment, who does an assessment, how they are carried out, who makes the decision, and tips for making the most of the care needs assessment. It also explains the eligibility criteria.

www.alzheimers.org.uk

The current situation might mean you will have a long wait so the sooner you apply the better. You have nothing to lose.

me and my sister are doing our best and she's got to help us to help her!

I doubt she will be able to do this. It's one of the losses of insight of many people with dementia.

 

[canary]

With dementia, the memory loss is, unfortunately, only the tip of the iceberg. What is far harder to deal with is the loss of life skills and their change in perception of the world around them. So many people with dementia (my mum was one of them) do not realise that they are no longer doing things - they really and truly think that they are - and do not understand that they have anything wrong with them and that they have changed in any way. They will, therefore, strongly resist any attempt to put things in place to help them, as they are sure that it is not needed and will get annoyed (if not downright angry) with you for suggesting that it is.

Logic and reasoning will not help, neither will pleas that she helps you out as she will think that she is already doing this and will be unable to see things from your point of view. You will need outside help, but you may well have to be sneaky and introduce things by subterfuge

 

[Commonpeople22]

Hi @Commonpeople22 and welcome.
it must be very hard to have to deal with both your husband and mom. Hats off as you seem to be very cognisant of the situation and issues.

Regarding your mom, is there someone with which you can split the emotional care of her? My sister and mom haven’t always had the best relationship and still have residuals. My sister and I work pretty much together but she always lets me be the bad guy (so to speak) with difficu lt decisions concerning my mom. Both of us are long distance (2.5 hour plane flight for her & circa 24 hours travel time for me) but find that professionals are able to work with us remotely when we ask. So for example, my sister and I worked together to get a caregiver system in place for my parents (both have dementia) initially. But I was the one to tell them they had to accept it or move to a care home (makes me the bad guy ?). My sister made the absolute decision that my mom had to go into a care home but I was the one to explain (&keep explaining). The thing here is that it’s easier for my mom to accept this type of information from me than my sister.

Thank you. My sister and I are very much a team, having seen my Mum and Dad through his terminal illness in the past.
Mum tends to take more note of what my sister says so she can be "Bad Guy" and it's acceptable!
My Mum does spend time with my sister when my sister isn't working. I don't think we would get any other care in yet as she's mostly still independent. We live in a very good community and we are encouraging her to get out more (she was very sociable before lock down.)

 

[Commonpeople22]

With dementia, the memory loss is, unfortunately, only the tip of the iceberg. What is far harder to deal with is the loss of life skills and their change in perception of the world around them. So many people with dementia (my mum was one of them) do not realise that they are no longer doing things - they really and truly think that they are - and do not understand that they have anything wrong with them and that they have changed in any way. They will, therefore, strongly resist any attempt to put things in place to help them, as they are sure that it is not needed and will get annoyed (if not downright angry) with you for suggesting that it is.

Logic and reasoning will not help, neither will pleas that she helps you out as she will think that she is already doing this and will be unable to see things from your point of view. You will need outside help, but you may well have to be sneaky and introduce things by subterfuge

Thank you. We have done some reading over the months we've had concerns, and dementia is very complex, isn't it? I tend to think of the confused bits as "holes" in awareness.
We're not up to needing help yet, but I have spoken to our local carers service who have advised me to contact social services.
Sneaky yes, I can see that!