Help please....

[gina1962]

Hello, I have just joined this forum and would like some help please.

My mum who recently turned 95 has just been diagnosed with dementia (it started off with sundowning), and could no longer live by herself so we have had to put her into a care home. The sundowning has extended into permanent hallucinations, but sometimes my mum is lucid enough to say "I know you all think I am daft, but one day you will find out I was right".

She has become very depressed since being put into the home a couple of months ago, and as I said the hallucinations have become much worse, to the point where she is suspicious of everybody and everything.

When we visit she is totally disinterested in any conversation we try to start and is solely focused on telling us what is happening, which of course is all imaginary. She constantly asks why she couldn't stay in her flat and why/how she ended up "in this hole" (her words). It has got to the stage where we feel unable to visit her alone and have to go in pairs to give support to each other. Yesterday I left feeling I really don't want to go back to visit again but I know I have to.

I am feeling very depressed and guilty and keep crying whenever I think of my mum. I am assuming these feelings are normal?

I feel very alone in this situation, my husband and 2 children both have Aspergers Syndrome (autism) and cannot be sympathetic, the syndrome makes them only aware of their own feelings and needs. I know I should be talking to my sisters about how I feel but I don't want to burden them as they all have their own illnesses and needs to deal with.

I hope someone can reassure me what I am feeling is normal.

Many thanks
Gina

 

[shelagh]

It is normal

As well as having been dignosed with dementia I have been a carer in the past and my also 95 is currently in a home. Everything you feel, the despir, the not wanting to go, thew need for support, the grief, has been felt by every carer on this forum at some time. Keep strong, go ion loving the mum you used to have and do what you need to care for yourself.
Shelagh

 

[BeckyJan]

Hi Gina,
Welcome to Talking Point although it is sad you need to be here.

You are having a difficult time, hard enough with your children and then these worries about your Mother. Depression seems to come often in dementia cases and I do suggest you highlight this with the MH Consultant or GP. It could be some mild medication is needed. None of us want to dope our relatives but if it improves quality of life then its worth considering. Also have you mentioned the hallucinations to the Consultant? Not sure if they can do anything but worth asking.

Please keep in touch and let us know how you are getting along. There are many wonderful members here who will support and share their experiences too.
Best wishes

 

[angelface]

You must feel so sad and stressed.

Is there anything you can do to divert you mum a bit? Any nice food, magazines. walks round the garden or round the CH. Maybe a CD or video?

Sorry if all these are old hat

 

[Noorza]

I can see we are going get on like a house on fire. Yes I've felt such a huge rollercoaster of emotions, nearly all through guilt and I know what you mean with Aspergers, my son has high function autism, he's already warned me he won't look after me like I look after mum if I get ill. You have to love the absolute honesty of autistic children.

 

[HanSpan]

I'm pretty new here too but just wanted to offer some sympathy and support.

At 47 I've only recently found out I have some aspergers traits (not been formally diagnosed as aspergers so I'm never quite sure what to say), and through that have come to understand that my father probably has too. He's now 80 with recently diagnosed dementia and I'm all he's got - so the combination of us two is interesting. We are currently wavering between what others probably think of as innapropriate joking, getting snarly with one another, and apologising for making the other one unhappy.

I do have huge feelings of guilt. Although Aspergers traits makes it difficult for me to see and recognise others' feelings that doesn't mean I don't realise intellectually that they probably feel carp, and then feel guilty for not being able to do better to understand them! Also I often attibute feelings to others that they probably don't have - so I feel guiltier for how I would feel if I were them when they may well not actually feel that (sorry that's everso hard to explain). Obviously I don't know your husband or children but you might find them far more support than you expect if you can explain in words to them how you feel, and tell them what you would like them to do.

I miss my Dad - the one he was even a few months ago - and I imagine you must miss your Mum too. But I too don't want to go and visit, its just too horrid to see, and although I miss him and I want him back I also can't help thinking if I was like he was yesterday I'd want someone to put me out of my mysery. I have this really strong urge to just run and hide and leave someone else to deal with it all.

Mmm. I've just reread that and I'm not sure It will do anything but making you more miserable. Sorry if that's the case. I guess I can only hope you take some comfort in not being alone in this awful situation.