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Loz_R

New member
Jun 4, 2024
8
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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.
Sorry to hear about your husband. I think my father was like this as well, he did some really strange things too. My mother is also going through it as well and is constantly up and down to the bathroom, can't remember that she's been or even needs to go. It's totally draining! Like you I also asked about something to help calm her but the GP said that this would only cause a fall. We're now trying Horlicks, lavender/camomile spray for her pillows and sheets and Radio 3 to see if this will help calm her.
 

GabriellaRose

New member
Jun 19, 2024
1
0
Hello,

I am 27 and my dad has dementia. He lives alone practically (my 23-year-old brother doesn't stay in the house often), his house is a complete mess and we are struggling to get help from adult social care as no carers want to support him until the house is in a better state, meanwhile I get early morning calls from the police as concerned neighbors find him wandering around early morning and shouting! I live in a different city, and feel very sad about it. Trying my best to navigate getting him support from a distance while driving back as much as I can. On here for support and advice as I found reading other people's stories helpful!
 

Patricia2

New member
May 30, 2022
6
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Sorry to hear about your husband. I think my father was like this as well, he did some really strange things too. My mother is also going through it as well and is constantly up and down to the bathroom, can't remember that she's been or even needs to go. It's totally draining! Like you I also asked about something to help calm her but the GP said that this would only cause a fall. We're now trying Horlicks, lavender/camomile spray for her pillows and sheets and Radio 3 to see if this will help calm her.
Ooo I’ll try that. I put a sleep mediation thing from you tube on the iPad the other night. He fell asleep, don’t know if it was a fluke or not. Went to look at respite places today, just not nice, very smelly, horrible. The one I did like wanted a minimum 3 week stay. Hoping for advice next week when we see the consultant. Can’t carry on like this.
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,986
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Hello,

I am 27 and my dad has dementia. He lives alone practically (my 23-year-old brother doesn't stay in the house often), his house is a complete mess and we are struggling to get help from adult social care as no carers want to support him until the house is in a better state, meanwhile I get early morning calls from the police as concerned neighbors find him wandering around early morning and shouting! I live in a different city, and feel very sad about it. Trying my best to navigate getting him support from a distance while driving back as much as I can. On here for support and advice as I found reading other people's stories helpful!
Hello @GabriellaRose and welcome to the Dementia Support Forum. I am sorry to read about your dad and the difficulty that you are having getting support from the social services. I would suggest that you get back on to them and state that your dad has started to wander and that the neighbours and the police are concerned about him because he is wandering. Please tell them that your dad is a 'vulnerable adult' 'at risk of harm' and that you will hold them responsible if anything happens to him. It is social services who have the duty of care - not you or your brother.

You might find it useful to contact the society help line for advice and I have attached their details below.

 

Debirainbow

New member
Jun 17, 2024
3
0
Hello, this is my first post - my 81 year old Mother has just been to the Memory Clinic and been diagnosed with unspecified dementia She has an appointment for an MRI scan coming up which will reveal more. Mum is widowed and lives alone not far from me. In the last few years she has had falls, hospital stays and needed a lot of care and support. She has a care team at the moment, but I'm not sure how long it will continue. I found this website by chance as my relationship with my siblings has broken down and I was feeling overwhelmed managing everything. They leave it months before they visit her or take her. I don't feel I can keep reaching out to my friends anymore. Trying my best but always feel guilty, she now doesn't leave her flat unless someone is with her.
 

Debirainbow

New member
Jun 17, 2024
3
0
Hello everyone, my Dad was diagnosed with Alzheimer's yesterday. We knew something was happening with his memory and I think we knew this was coming but it's still left us all feeling completely wiped out. I just feel incredibly sad and overwhelmed. I felt so guilty leaving my Mum & him yesterday to come home. I'm sitting here thinking how I can best juggle my own family life (with 3 teenagers!) with the needs of my Mum & Dad. I'm sure I'm not alone in this situation, so just reaching out for friendly advice and support.
 

Debirainbow

New member
Jun 17, 2024
3
0
Hello, am in a similar boat, mum of teens too - I just have a sinking feeling & then feel bad for feeling that way, so hoping this group can keep me afloat and help me manage things properly.....
 

Caz M

New member
Jun 22, 2024
2
0
Hello, I have just joined and so thankful that this website and this forum exists... It's been a bit of a struggle lately and I am finding it hard to share all I feel with friends and family. My story is this... My mum started to become unwell in 2016. It started with small things, shifts in behaviour and then bigger things - my mum seemed to be becoming someone else, and things she once did and loved to do stopped. She didn't pay attention to hygiene any more, she didn't want to go out any more, her language became abusive and she became violent at times - towards my dad and all of us.

Over the next few years, this continued to get worse and my dad struggled to look after her when she was at home. My mum was sectioned a few times and ended up in various assessment centres, and in respite care. We were told 2017 it was likely she had Pick's Disease, or Frontotemporal Dementia. My mum was only 68. There would be times when my mum seemed to be 'better' but always underneath, there were these growing behaviour issues. It didn't help that my mum has acute anxiety, and so many Dr's she saw during that time were quite perplexed by her condition and many saw her as psychotic.

We skip ahead to last year, mum was finally placed back in a care home - after 2 years of being in a unit with people with advanced dementia - at this point, apart from the behaviour changes - my mum showed no signs of 'typical' dementia behaviour - memory was brilliant as ever for example. After a period of not settling in to the care home, my mum seemingly seemed to turn a corner. She was the best she had been in years. It was amazing. And as a family, we put aside the previous diagnosis of Pick's Disease (as we had also been told by a Dr my mum didn't have it).

In September last year, my mum had a 'seizure'. Initially the care home thought she's had a stroke, however she ws taken to Hospital and this was ruled out. All tests done. blood, MRI's, scans, came back clear. But for 24 hours, mum lost the ability to speak. The dr said, this would be connected to her Pick's Disease (which had been ruled out). He said the brain will often blow a fuse, and then the person would slowly return to how they were. Mum recovered. It was amazing, her speech returned, she was physically good, and no further issues. In fact, that Christmas 2023 we had the best one we'd had since 2015. Mum was doing really well, and we felt it was the best she had been in years.

New Years day, she had another seizure. Again, all tests clear. Mum recovered, like before. 1 month later, a bigger seizure. At this point, the hospital were saying it wasn't a seizure, as it didn't show the typical signs of one. Mum's 'episode' lasted an hour - she was convulsing etc and this was only brought under control by meds given at the hospital. Mum's recovered followed the same as before, mum would lose the ability to speak, would sleep a lot, be very agitated for a few days, before 'coming back'.

Before this becomes too long, my mum has had another couple of seizures - one big one and one not too bad. But, despite my mum being on an anti-seizure medication when she has been admitted to hospital, they have not continued this - saying she isn't having a seizure so they won't prescribe it. unfortunately the last seizure my mum had, has left her with permanent issues - she is now very confused, her words are jumbled up. Within 6 months she has gone from someone who was the best she's been in years to someone who clearly has dementia. It's been a lot to process. And I am scared, each seizure now, will take less away from her and since she is not being prescribed anti -seizure meds, it feels like we are just waiting for the next one. This is hard to accept, and I am feeling so sad all of the time.

Does anyone have an experience of FTD and seizures, and can offer any advice with regards medication? I have a phone appointment with mum's Dr next week, where I want to discuss the reasons why she can't have the medication. Any support would be appreciated. Thank you.
 

Kevinl

Registered User
Aug 24, 2013
7,379
0
Salford
Big read that Caz, but a bigger welcome from me and I'm sure us all.
Nothing useful to say about mum's condition I'm afraid so welcome is all I can say. K
 

Mrs Bun

New member
Jun 22, 2024
1
0
Hi this is my first post on the Forum , i have been caring for my mum who will be 90 this year for the last 6 years after her Alzheimer's diagnosis , i am hoping that i can get some practical advice and support , mum still lives on her own with amazing daily carers who she would rather not have but most definitely needs,
its still a shock this far in to the process when the next stage changes everything you think you have put in place to keep her safe and happy , i have a sister who does help but lives to far away for the day to day needs , i thought the forum sounded good idea for the times i feel overwhelmed with things, our latest upset is that mum thinks the trees next door are going to fall on her house because they are so tall and no amount of reassurance seems to help , i have had to promise to have them cut down each time she gets distressed and that seems to help. just needed to offload a bit today , thanks for taking the time to read my story , some great stories and yes Katharine J totally understand the balancing act that needs to be performed every day , i spend quite a bit of time feeling very guilty about everything , everyone tells me that i must take some time for me and thats true but one of the hardest things to do but it will come gradually as you move through the coming months, reach out to as many agencies as possible and it will gradually fall in to place, wishing you all the best
 

Izzy

Volunteer Moderator
Aug 31, 2003
75,842
0
73
Dundee
Welcome to the forum @Mommajan.

I’m sorry to hear about your mother but I’m glad you’ve found this forum. You’ll get understanding and support here.
 

Mommajan

New member
Jun 24, 2024
5
0
Thanks for your welcome. I feel your forum will be a great help, once I can put into word how I feel.
 

Gosling

Volunteer Host
Aug 2, 2022
2,166
0
South West UK
Hello @Mommajan and welcome from me also to this friendly and supportive forum.
This is a great safe space to put how you feel - we are all bought together here by the world of dementia, so you will find total understanding and sound advice of you need it. Only when you are ready.
 

Loz_R

New member
Jun 4, 2024
8
0
Ooo I’ll try that. I put a sleep mediation thing from you tube on the iPad the other night. He fell asleep, don’t know if it was a fluke or not. Went to look at respite places today, just not nice, very smelly, horrible. The one I did like wanted a minimum 3 week stay. Hoping for advice next week when we see the consultant. Can’t carry on like this.
Looks like the Horlicks might be helping. I've heard about the respite centres and I think it's just good luck if you find one that is actually lovely. A friend quoted the cost for 3 nights relief that was just so out of her financial affordability but yet, we all need a break.
 
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