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How do others cope

Julann

New member
Sep 27, 2020
4
My husband has dementia i dont know what stage he still remembers all the family but thinks his mum and dad are still alive and family who are deceased. Albert used to be a farmer so when his sundowner time starts usually about 5.oclock he goes back to farming bringing in the cows ect
I am his only carer I lost my little girl 9 months ago not long after Albert got a serious uti and delirium the social worker at the hospital thought it would be a good idea for him to go into respite while there he had two falls all i could do was see him though the window he started not walking and screamed when anyone touched his right leg
Eventually i informed manager i was taking it further is nothing was done it was hard not being able to go in a district nurse was called and she called an ambulance the hospital scan showed he had a fractured hip which 3 weeks old and started to calcificati so they couldn't operate
He is at home now with carers coming in just to change him
At the moment he is bedridden this is so hard as he wants me there all the calling constantly and does other carer's have there loved one's saying the same thing its usually please help me when are we going home all the time i never go out its so hard sorry about the long story x
 

MarleysMum

Registered User
Sep 17, 2020
22
My husband has dementia i dont know what stage he still remembers all the family but thinks his mum and dad are still alive and family who are deceased. Albert used to be a farmer so when his sundowner time starts usually about 5.oclock he goes back to farming bringing in the cows ect
I am his only carer I lost my little girl 9 months ago not long after Albert got a serious uti and delirium the social worker at the hospital thought it would be a good idea for him to go into respite while there he had two falls all i could do was see him though the window he started not walking and screamed when anyone touched his right leg
Eventually i informed manager i was taking it further is nothing was done it was hard not being able to go in a district nurse was called and she called an ambulance the hospital scan showed he had a fractured hip which 3 weeks old and started to calcificati so they couldn't operate
He is at home now with carers coming in just to change him
At the moment he is bedridden this is so hard as he wants me there all the calling constantly and does other carer's have there loved one's saying the same thing its usually please help me when are we going home all the time i never go out its so hard sorry about the long story x
I’m so sorry, you sound exhausted and I do know from experience that its even harder when you are bereaved. My experience was helping care for my Mum (and now my Dad) But I didnt/don’t live with them. She would constantly ask to go home and get very distressed, despite us trying all the suggested remedies I’m sure someone on here will have some ideas to help. It’s difficult to comment when you don’t know someones circumstances but could you have carers coming in more regularly, maybe even overnight. Maybe that would give you a break. Have you had a carers assessment ? You also need to be able to grieve your loss and if you haven’t already done so I would see your GP and try to access some counselling
 

Wildflowerlady

Registered User
Sep 30, 2019
279
Hi Julann
What a terrible time you are going through you will find lots of support understanding and some advice here.
I very much appreciate the forum as have my dad with dementia and a older partner with Parkinson's although dad does not live with us but at his home alone.
Has there been any proper investigation as to how his hip was fractured ? it must have been a terrible shock when it was discovered so was good that you insisted he be looked at by someone properly.
I know four care visits a day is the maximum my dad can have at home via the Local Authority they pay for some of his carer visits and he contributes a bit as well.
Can you request some further visits at home? I'm not too sure about things like Carer Allowance but my dad receives Attendance Allowance so perhaps you can apply and use the allowance to pay for an extra carer to come in and give you a bit of a break although you may have already sorted that..
My dad still knows who my sister and I am but just recently he has started talking about his mum and dad being alive a lot and that he wants to go and live with them he has even called them mummy and daddy which was really strange to hear and I did find upsetting.. I tend to just go along with what dad says as its easier as he would get in a temper if questioned or told it wasn't possible.
Dad is 86 years and mixed dementia it was officially diagnosed around three and a half years ago but signs were there before that. Dad is now doubly incontinent so needs changing as wears pads and has a catheter fitted. Does any of that help gauge the stage your husband is at? I think dad would be classed as Moderately Severe Dementia stage 6 or thereabouts. Dad gets very muddled and has become very verbally aggressive now starting to become more physically aggressive.
I'm guessing your husband is much younger than dad so must be especially hard and totally unexpected? and on top of that you have lost your daughter too so very sorry for your loss.
My dad goes from thinking he's in good health to saying of late he has had a Heart Attack and only other day told carer he wasn't going to bed as a ambulance was coming for him.
To be honest we are trying to get dad into Respite as his carers are struggling but he's having none of it so we are not sure what is going to happen but his dementia has got to the stage that care at home is becoming very difficult not just for the carers but for my sister and I who visit him. Our mum died four years ago and we have looked after dad for four years and carers for around three and half years.
I can understand you would be very reluctant to have your husband re-admitted for Respite but is there somewhere different he could go that you would be happier with as clearly this is too much for you right now. Sending you a hug 🤗and I do hope things will get a bit better for you very soon.
 

Whisperer

Registered User
Mar 27, 2017
231
Dear @Julann

Let me say straight away you have nothing to apologise for at the end of what is your first post on this forum. I am glad that you have found it and be assured you are perfectly welcome to seek help anytime. Caring is very demanding but more importantly it can be a very lonely role. Coming here to share your concerns is a safe thing to do.

I would make a few points to you.

1) God you have been through a lot this year, forgetting Covid19 playing in the background. I am very sorry about the loss of your daughter. I think @MarleysMum makes a very valid point that you have had no time to properly grieve for that loss. Are there any other family members or friends you can talk to? My father died in distressing circumstances and years ago mum got help and support from the CRUISE charity. Do they operate in your area, they help support people who have lost a close relative.
2) I appreciate the upset caused by the constant repetitive questioning, in your case when are you going home. Not sure how you are responding but with my mum I try distraction by moving the conversation onto another topic, but in honesty without much success. When mum gets stuck in a loop I now agree and tell a love lie (porky pie). Yes mum we will go home but it is to late today, the weather is to bad, there are roadworks so we will go next week, the car needs fixing, etc. In reality the person with dementia is not usually talking about a physical location, more an emotional state of well being. Home is usually where they grew up, but they are not so much yearning to return there physically, as to recapture the emotional well being they felt as a child in a loving, safe home. Dementia makes where they currently are feel anxious, uncertain, etc, which is not the result of anything you are doing. By agreeing to their request but not right now you can possibly increase their sense that all will be well. I found it hard initially but it does seem to work no matter what loop your loved one is caught up in.
3) I do not know enough about your background to really say more. What might help others as well is if you could post a little more detail. For example have you had a carers assessment, what contact do you have with your GP, what contact you have with family and friends, etc. Please be assured in doing so you are not betraying any confidences. No one will judge anything you say, other forum members will want to offer advice and support. This is a very supportive forum. I washed upon its shores a few years ago by chance and it has been a help to me, certainly in reducing my feeling of being isolated in the carers role. You have now found it so please post again with a little more detail as outlined above.

My very best wishes.