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In Despair - Carers UK Forum

In Despair

Tell us a bit about yourself here.
I am new to carers, male and aged 84, fairly fit and mentally good, until some 12 months ago my wifes memory began to fail.
Coped ok initially, until my wife began to imagine her parents and siblings were still alive [ all had passed away between 10 to 40 years ago], and culminated in her visiting our local hospital where she new her father was, and I had to search the hospital with the chaplain until we found her in a corridor, and the chaplain explained to her that her father had passed, but had sent his love.
She accepted this, but on arriving home wanted to arrange the funeral and go and visit her mother, both had died 20/30 years ago.
Our pet cat has become her child, and dolls her children, so I arranged for us both to see our GP, who advised me she must attend a memory assessment which he organised , but 20 weeks later we are still awaiting an appointment, which is now promised in the next few weeks.
My wife is physically good, and happy, but with the constant 24 hour verbal nonsense, her loss of ability to use the phone, shop or cook without disasters, I am in despair, and regularly in tears as our cold existence drags on day after day with no hope of a future.
I could add more and more detail but no point, and I do realise some carers cope with a lot more than I do, but that doesn't help.
I need to share, and this has helped. Any advice appreciated.
Hello Keith
Welcome to the forum
It's very heartbreaking and difficult to watch a loved one decline with dementia. Ambiguous grief. Maybe look it up.
Through experience with my lovely late husband I don't feel it's worth correcting your wife. As much as you can go along with what she is saying and doing. In her dementia world she really believes the cat and dolls are her children and making her happy.
My husband uses to ask where his mother was, and I couldn't bear to tell him she died many years ago. He would grieve again. I used to say she was ok, couldn't get out that day because of the weather, or was at the deaf club she attended. It pacified him.
Have you been in touch with the Alzheimer's society.?
Can you manage to get some time for yourself, it's really important .Any family or friends who could sit with her?
I definitely understand the tears.
Others will be along I'm certain. Please stay with us and vent as much as you want. It helps
Keith
I don't have experience of this but I have friends who have done with a parent and the lady next door.
My friends were devastated at this living loss of their parent and I am sure it is no different for you.

The constancy of events and issues must be very wearing on you and exhausting, my father was in shock from an accident in his 70's I think and had no short term memory for many months and my mother bore it very well.

This is a whole new part of life for you, a totally different relationship and way of life and emotional journey as you become carer, parent and safeguarder for your wife.

Have you seen any articles about music? if your wife had a love of a certain music/band/artist etc try playing the music to her, it often has very good results for the time the music is being played.

The neighbour would stand outside waiting for her parents and then she started walking to the village where she grew up to look for them, winter came, dark evenings, risk of being run over and hypothermia, her walkabouts were too dangerous and she was taken to a specialist care home.

You're not alone Keith, you are here, you will also find the websites and forums for dementia and for alzheimers useful.

Contact social services for a care needs and carer needs assessment, it is means tested to £xxx

https://www.carersuk.org/help-and-advic ... assessment

https://www.carersuk.org/help-and-advic ... assessment
Thank you for your help and advice, its so good to know there are understanding people out there.
I have a son and daughter who keep in 'phone contact but they both live hours away so see little of them, and with some friends who we do not now see as I feel they are not comfortable with our situation, I feel lonely and depressed which frightens me as if I crack up my wife will not cope alone.
I am seeking help from carers meeting locally, as I would like to meet someone in a similar situation for a chat and coffee as and when I can get out.
Gp suggests I should take anti depressant drug but I am trying to avoid this if possible.
Thank you again for positive advice, much appreciated.
Keith
I do hope you can meet up with someone in a similar situation. Apart from the forum and my family, I used to have a cuppa with a friend who's dad was in a similar situation. ( My husband and her dad were in a nursing home because of other health issues).. We understood each other and the heartbreak. Would have a chat about them then change the subject for our own sanity. I'm sure it will be so good for you to meet up with others. You won't feel so isolated.
I too had so called friends who backed away when they knew of the situation.
I feel for you as you sound very lonely and isolated. I totally agree with you with regard to a/d - avoid them if you can. Have you thought about contacting your local Carers Group? They may have a telephone befriender system in place. I know the groups work differently but often the befrienders have been carers themselves so would understand. Worth a try?

This is a lovely and none judgemental Forum and all of us are facing or have faced challenges with regard to caring so please keep posting.
Hang in there Keith
Your feelings and emotions are normal responses.

Keep hope that you will connect with others through here, local care groups and dementia/alzhiemers groups and have things from it to look forward to - be it just a phone or message chat, group meet up or a coffee with someone. At such times, the little pleasures of the tiniest kind can be the biggest ones.

Even have your own little things to look forward to - like decide to have your favourite tea on Wednesday, your favourite sandwich for lunch tomorrow, your favourite jumper on Thursday.
It may sound feeble but treat like a treat to yourself.
Be your own best friend and spoil yourself with these things.

You really need a diagnosis to help things move forward and get the care your wife needs.
But that doesn't stop you getting in touch with local care groups for support, friendship, tips and advice.
Keith
Also it helps to understand you are going through ambiguous grief. Grieving for some one who is still with you in body but personality is declining and you watch while they go deeper into their own little world. Deep down they still love you.
Hi Keith,

there is information on ambiguous grief and suggestions on how to manage it here https://alzheimer.ca/en/help-support/i- ... loss-grief

and here https://www.alzheimers.org.uk/sites/def ... vement.pdf

Melly1