Say hello and introduce yourself

[Izzy]

Welcome to the forum @KatharineJ.

I’m sorry to hear about your dad’s diagnosis. You’ve certainly come to the right place for friendly advice and support. @Gosling gave this link in another post above and you might find it useful too.

The law on driving and dementia

Drivers with dementia must tell their licensing agency and car insurer straightaway. Find out more about UK law on driving and dementia, and what happens if these rules are not followed.

www.alzheimers.org.uk

I know it’s a real cliche but please take one day at a time. Enjoy the times you have with your mum and dad and make sure you come here for support when something concerns you and you need to ask a question or share a concern.

 

[Gosling]

I think this one may be the one @Izzy meant to addd @KatharineJ .

Alzheimer's disease: Understanding your diagnosis

If you have recently been diagnosed with Alzheimer's disease, this booklet is for you. It will help you, and your family and friends, to understand more about the condition and how it can affect you.

www.alzheimers.org.uk

 

[Izzy]

I think this one may be the one @Izzy meant to addd @KatharineJ .

Alzheimer's disease: Understanding your diagnosis

If you have recently been diagnosed with Alzheimer's disease, this booklet is for you. It will help you, and your family and friends, to understand more about the condition and how it can affect you.

www.alzheimers.org.uk

Oops! Sorry @KatharineJ and @Gosling 🙄

 

[Patricia2]

I am a carer for my husband, he was diagnosed with Alzheimer’s about 4 years ago. In January he had a stroke, physically he is well but mentally he has really deteriorated. He now attends a day centre whilst I work part time. I manage to get a day to myself once a week whilst he is at the centre. For the past few weeks he has made a noise constantly, like an exaggerated sigh. It just doesn’t stop and it’s starting to drive me up the wall. He says he can’t help it, sometimes denies he’s doing it. A few nights ago I got so frustrated I went in the other bedroom, could still hear him. He was unsettled and got up repeatedly shouting me so ended up back in my bed. He starts first thing where are we going today, we go out and we’re not back 10 minutes and he’s asking to go out again. When home he is constantly going up to bed, then he comes down because he can’t sleep. It’s relentless! I’m beginning to dread weekends with him, started to look at respite places but I know he won’t settle, when he was in hospital he spent the nights asking for me and didn’t sleep. What do I do? I asked the community nurse about medications and was told that he would be drowsy and unsteady so wouldn’t be able to get out and about with him. Surely there’s something to help him?
Sorry for the rant. Thank you for reading.

 

[leny connery]

I am a carer for my husband, he was diagnosed with Alzheimer’s about 4 years ago. In January he had a stroke, physically he is well but mentally he has really deteriorated. He now attends a day centre whilst I work part time. I manage to get a day to myself once a week whilst he is at the centre. For the past few weeks he has made a noise constantly, like an exaggerated sigh. It just doesn’t stop and it’s starting to drive me up the wall. He says he can’t help it, sometimes denies he’s doing it. A few nights ago I got so frustrated I went in the other bedroom, could still hear him. He was unsettled and got up repeatedly shouting me so ended up back in my bed. He starts first thing where are we going today, we go out and we’re not back 10 minutes and he’s asking to go out again. When home he is constantly going up to bed, then he comes down because he can’t sleep. It’s relentless! I’m beginning to dread weekends with him, started to look at respite places but I know he won’t settle, when he was in hospital he spent the nights asking for me and didn’t sleep. What do I do? I asked the community nurse about medications and was told that he would be drowsy and unsteady so wouldn’t be able to get out and about with him. Surely there’s something to help him?
Sorry for the rant. Thank you for reading.

 

[leny connery]

sounds like that for your sake he needs to go to respite. settled or not. You need a break to be able to carry on. what about medication at night so that both of you can sleep?

 

[Patricia2]

sounds like that for your sake he needs to go to respite. settled or not. You need a break to be able to carry on. what about medication at night so that both of you can sleep?

I agree, feel really awful about doing this though. Night time medication has also gone through my mind. You get so many conflicting statements from health care providers that you wonder what to do for the best.

 

[leny connery]

I agree, feel really awful about doing this though. Night time medication has also gone through my mind. You get so many conflicting statements from health care providers that you wonder what to do for the best.

it is true that giving sedative /sleeping pill may affect their balance, but maybe ask for a low dosaage and night time only and ask your GP is that is low risk? EVERYONE feels awful about putting their loved ones to the hands of professionals and carers at a home, but, there is a limit. If you are spent, exhausted, ill with the caring, then what?

 

[Louise7]

Hello @Patricia2 and welcome back to posting on the forum. As already mentioned there does tend to be a reluctance to prescribe medication to assist with sleeping problems due to falls risk but as your husband is constantly shouting out and is unsettled when on his own at night, it does sound as though he is very anxious. Rather than medication specifically to help him sleep, perhaps speak to the community nurse about whether there is anything that can be given to reduce your husband's anxiety, or maybe ask for a referral to the older adults mental health team? I hope that you do manage to get some respite, if you find the right home they will be able to deal with your husband and give you the well deserved break that you need.

 

[Patricia2]

Hello @Patricia2 and welcome back to posting on the forum. As already mentioned there does tend to be a reluctance to prescribe medication to assist with sleeping problems due to falls risk but as your husband is constantly shouting out and is unsettled when on his own at night, it does sound as though he is very anxious. Rather than medication specifically to help him sleep, perhaps speak to the community nurse about whether there is anything that can be given to reduce your husband's anxiety, or maybe ask for a referral to the older adults mental health team? I hope that you do manage to get some respite, if you find the right home they will be able to deal with your husband and give you the well deserved break that you need.

Thanks, I find there is a general trend of not prescribing meds until really needed. He did have an antidepressant but they stopped it when he had his stroke. The problem is I don’t want him asleep in the chair all day, he needs to have a life. I’m going to call the mental health team tomorrow and ask for help.

 

[Louise7]

Hopefully the mental health team will be able to help. It can sometimes take a little while to find the right medication and/or the right dosage, but it is possible to get a balance between reducing symptoms and not over sedating so fingers crossed something will help.

 

[Tristy]

Evening everyone. It's so lovely to be here where people might understand.

My mother was diagnosed with dementia earlier this year and my father has cognitive impairment and other health issues following an infection. I call every day and bring them shopping on the weekends -- which I know is a drop in the ocean compared to live-in carers -- but I'm struggling as I have multiple autoimmune diseases and am working all hours and through chronic pain to pay a miserably-high mortgage.

They are in their 80s, likely neurodivergent (and misunderstood because of it) and fiercely independent. It took several months and creativity to get my mum to go to the doctor to get diagnosed. They don't have a 'sense' of when to call a doctor (my mother was recently delirious with an infection and my dad didn't realise this needed attention). They don't seem to understand power of attorney either.

I'm going to call the helpline this week to find out what they can access, but I'm dreading my parents' response. I'm just feeling so overwhelmed and worried about what will happen next.

 

[Squizzle]

Hi Everyone,
I have been working as a self-employed (mostly through an agency) live-in carer for 12 years and many of my clients have some degree of dementia.
I am not, however here to give advice, sadly, but to learn from others' experiences so I can give them the best possible care.
For example I am currently with a regular client in her late eighties who is permanently depressed.
"Oh, why do I feel so rotten today?"
"What's the matter with me? I'm so miserable."
"Oh dear, oh dear"
Her family have been told that the area of her brain that feels pleasure has been affected so however cheerful and positive I am (and I do usually get my clients laughing and joking!) I can't cheer her up.
Occasionally there are little flashes of sparkiness and humour, but then it's back to a dreary monotone and misery.
She is on an antidepressant as well as Lorazepam and we have to give her placebos as she is always asking for "another pill".
Her daughter has been living with her on and off. I have been coming here now for a year or so and of course she's getting worse, sadly.
Any advice welcome!

 

[Patricia2]

Hopefully the mental health team will be able to help. It can sometimes take a little while to find the right medication and/or the right dosage, but it is possible to get a balance between reducing symptoms and not over sedating so fingers crossed something will help.

Thanks, I’ll try to get hold of them today. Let you know what happens.

 

[Grannie G]

Welcome @Tristy

I hope you get some answers from the helpline.

With both parents neurodivergent and needing support, you have a task and a half on your hands.

It might be best to find out what can be done without discussion with your parents. There is no need to disturb them while you are exploring possibilities if you are only going to be met with their lack of understanding of their needs.

It might also help you to start your own Thread in the section I care for a person with dementia where you can monitor your progress in getting help for their care.

I care for a person with dementia

This forum is for people who are involved in the care of a person with dementia.

forum.alzheimers.org.uk

 

[Tristy]

Welcome @Tristy

I hope you get some answers from the helpline.

With both parents neurodivergent and needing support, you have a task and a half on your hands.

It might be best to find out what can be done without discussion with your parents. There is no need to disturb them while you are exploring possibilities if you are only going to be met with their lack of understanding of their needs.

It might also help you to start your own Thread in the section I care for a person with dementia where you can monitor your progress in getting help for their care.

Thank you so much for replying, and yes you're right -- I'll get my ducks in a row in the first instance and see what can be done.

 

[SweetSioux]

Hello and thank you for accepting me into the group. I am the sole caregiver for my 83 year old husband who is has been legally blind due to an aggressive form of glaucoma for about 3 or 4 years now, has dementia (advanced) and also atrial fib and type 2 diabetes. I have congestive heart failure and the caregiving duties are taking a toll on me. Lack of sleep is the one of the hardest things. I'm trying to do my best to care for my husband and find it's not easy to find respite care as assisted living facilities that had provided those services have discontinued since they have filled up all their beds. I wonder if anyone has experience interference from estranged adult step-children? Things like showing up at your door unannounced early in the morning after ignoring their father for 15 years+? Not sure of the motivation at this point. I am not trying to prevent relationships but I can't handle any further burdens. If anyone isn't on board to be helpful it's not only unhelpful, it's unwelcome. I try to keep a routine as I find disruptions are very upsetting and set my husband off making for a very bad day -- or days -- for me. They are hard enough as it is. I think I've been able to respectfully set boundaries. If you want to visit we need to plan in advance.

 

[SweetSioux]

Hi, my father passed away back in 2013 from Alzheimer's which he had probably had for about 15 years and now my mother has dementia and Alzheimer's. There has been quite a dramatic change in her in the past month. We are very lucky to have a live-in carer but now I am working part-time in order to give the carer time-off to catch up on sleep as my mother is awake a lot of the night. It's been very stressful, we are all so tired. She is now almost fully doubly incontinent and doesn't know who I am any more though does know to call me my name when I'm here. So there is a bit of memory there. Our carer is amazing with her, so much more patient than I am when I was looking after her on my own. It's taken a long time to get everyone on board with so many decisions that have to be made along with all the maintenance costs to keep her in her house etc. My anxiety about money is just enormous!

Greetings Lauer, I am sorry to read about your father's passing from Alzheimer's and now your mother's journey. I'm a sore caregiver and the lack of sleep is the hardest part for me. I am heartened to hear you have been able to employ a good caregiver to help and give you some respite. If you are in the US have you looked into seeing if your mother qualifies for medicaide? And/or is your mother or was your father a veteran? If so, there is assistance available for veterans 65+ and/or their spouses. You can google the information and go to the VA website to find all the forms. I send my best wishes to you on this difficult journey we find ourselves on!

 

[Kat Love]

Hello, my husband has dementia .

 

[northumbrian_k]

Hi @Kat Love and welcome to Dementia Support Forum. Iam sorry to hear about your husband. If you need information, have any questions, or just need to share with people who truly understand, this is a great place to do it.