New Here - needing some help

[mparmar]

Hi Everyone (apologies in advance of the long post)

It’s taken me a while to register here. I’ve been reading posts and would like some support. My situation is as such - my father passed away end of November last year, prior to that my mum had a fall and ended up in hospital and has since not been home and is currently residing in a care home.

She has thyroid cancer - which although is stable has not helped her situation. For the last year and most noticeably in the last 6 months my mum has deteriorated significantly. She cannot live by herself and due to her fall when she was on her own and the state she had the house it wasn’t safe for her to go back. Whilst my father was in hospital she didn’t clean the house - left papers everywhere, clothes everywhere and it just wasn’t safe for her anymore

Thing is she hasnt been officially diagnosed with any form of dementia but being her daughter I have seen how she has deteriorated- some examples are here

She calls me multiple times a day (10-15 times a day) forgets we have spoken and repeats the conversation - she doesn’t like being in the home and thinks everyone there has dementia and she is fine. She wants to go home but I know she can’t - when I have gone to visit her she still thinks she lives at home and insists on going to “get me something from the shops” up the road. She has moments of paranoia - and times when she just forgets where she is going - yet some visits she is quite normal and those are the good days

I live 2 hours from my mum and am an only child with a full time job and a young family so it’s really hard to visit all the time - although I have been going to visit her at least 3 times a month (if not more) since November last year (at one point it was every week)

I have asked for her to be formally assessed but every time someone comes to see her she refuses to speak to them so they can’t asses her

She is getting worse and called me the other night at 1am scared and wanted someone to go and stay with her

The home have seen her deteriorate and say she will change her clothes multiple times a day but when I speak to my mum she thinks nothing is wrong

It’s really hard to manage and I don’t know what’s right - all I know is that she can’t be on her own and needs help. The home are amazing with her but daily I hear from her how she wants to go home and hates it there and I feel so guilty - but I don’t know what else to do

I’m just posting here for some reassurance I guess that this is normal and I know it’s a long journey ahead but writing this is my first step of realising that not only have I lost my dad but I’ve lost my mum too

Monique

 

[Grannie G]

Welcome @mparmar

I`m so sorry there is so little you can do to help your mother. It`s an impossible situation when you are so far away from her.

At least she is safe and being cared for no matter how much she dislikes where she is. It`s good you are happy with the care the home is providing for her. Hold on to that. Whatever the location there is no way you would be able to meet her needs if she was allowed to go home.

I would ask the care home to try to find a way to limit your mother`s calls. I had this with my mother. The minute she put the phone down, she forgot and phoned me again.

Sadly your mother is asking for something you are unable to provide.

I hope you feel this community will help provide the support you need. You are in a no win situation, still grieving for the loss of your father and fearful for the well being of your mother.

Just know and accept there is little you can do to ease the situation and look after yourself.

 

[jugglingmum]

I had children aged 8 and 12 and worked part time when mum had her crisis.

A four hour round trip several times a month is adding a lot to your family life and a balance has to be made between your mum's needs, your needs, your children and husband.

Your mum is safe where she is, clearly isn't capable of living on her own and is taking it out on you as the person who is a constant. Wanting to go home and not understanding that they can't is part and parcel of dementia.

As grannieG has said somehow you need to find a way to limit your mother's calls. All the time she is calling you she is staying dependent on you and not coming to rely on the staff in the home. She isn't going to come to any harm if you don't answer. I think you should limit the times of day you answer her calls, the home will call you if something is wrong. Unless you have to I'd try to visit less often as well.

If she is self funding you could consider moving her near to you as this will make things easier especially if she needs hospital visits.

As for diagnosis, I wouldn't sweat this one too much, if she has Alzheimers there is medication which it is thought slows the progress of the illness but doesn't reverse it, and otherwise there isn't anything specifically. The home will manage her behaviours in the same way either way.

Somewhere on the forum there is a stick for bashing the guilt monster as you have done the best you can for your mum by finding her a home which can look after her needs.

Your children need you as well and you can't be everywhere at the same time.

 

[canary]

Im afraid that this wanting to go home is almost universal in later stages of dementia. They are trying to escape the confusion of dementia and want to go somewhere where they felt safe. They dont understand that they will just take the confusion with them and wherever they are they wont be happy. Taking her home will not solve the issue and she may not recognise her home anyway - there are people up and down the country who are asking to go home when they are sat in their own homes. Many people who want to go home are thinking of an earlier home - a place they lived when first married, or a childhood home. My mum wanted to go home to her childhood home that had been bombed in the war - truly a mission impossible.

 

[mparmar]

Thank you everyone for the support. It is really difficult knowing what to do - I know the home is the best place for her but some days I think would it be easier for her being at home yet I know the answer

I have comfort knowing she is safe and surrounded by people and I try and not answer all the time - working full time I am on calls during the day and can’t answer - everyday my mum will ask me the same questions , what time kids coming home, are you working from home, etc etc.

I worry about when things will get worse and potentially will she stop remembering who we are? She adores her grandkids and still remembers things however at times I think perhaps she remembers them as babies and me as pregnant - as she seems surprised how they have grown and how I look now?

Anyway I have to try and manage this as best as I can - I have a accepted that my mum who once was isn’t now and I have to manage this somehow

Being here and able to speak to people going through similar is really helpful and I thank you for taking time to read my post xx