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Loz_R

New member
Jun 4, 2024
8
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.
Sorry to hear about your mother, and about your relationship with your siblings. It has taken a long time for my sibling to come on board, I believe a lot of it is to do with denial, not accepting that the situation is what it is, or possibly a fragile relationship with their parent. Lots of friends who have found themselves to be the sole carer or if you are lucky to have a carer, then still the one to look after everything. It's all consuming! Do any of your siblings have partners that you could speak with about it, this is how I got my sibling on board. Also, do you have Power of Attorney set up so that at least you can deal with all the financial and medical issues - you will need this and it's really helped me.
 

longtallsally001

New member
Jan 11, 2024
1
0
Hi I’m Sally Mums Alzheimer’s has accelerated after three falls and we have made the difficult decision of putting her in respite going onto a permanent home. She’s refusing to eat and drink much won’t get out of bed and is very down. I feel so guilty it’s awful. I think I worry more now than ever. Sal
 

Kevinl

Registered User
Aug 24, 2013
7,284
0
Salford
Please just both of you Nikki and Sal never think that what you post on here goes unread, if you want other people's stories you've come to the right place and guilt about a care home is often discussed, it is what it is and we are all here to help and advise if we can. K
 

Louise7

Volunteer Host
Mar 25, 2016
4,992
0
Hello Nick @Nikki Rad and welcome to posting, the forum has a wealth of useful information about all things dementia related plus a lot of friendly support and shared experience from other members. People are always happy to help if they can, and you are very welcome to join in with conversations, start your own threads or contribute in whatever way suits you best.
 

Louise7

Volunteer Host
Mar 25, 2016
4,992
0
Hello Sally @longtallsally001 sorry to hear about your mum. It's common for falls/injuries/hospital admissions to cause a downturn in someone with dementia but it's very hard when someone goes into care, both for the individual and their loved ones. I went through similar with my mum, along with many others here too, so we understand how you are feeling. Your mum has been through a lot and it will take time for her to settle, but you will find friendly support here, it's a safe place to talk about how you are feeling, you won't be alone here.
 

nicolajane67

New member
Feb 2, 2022
1
0
Hello, this is my first post on here & looking for some advice please.
My Mum, who is 85, was diagnosed with Alzheimer's just over 2 years ago although it was evident before then & the lock downs really seemed to accelerate it. My Dad is 90 & cares for her at home although we have carers who come in the mornings to help her get up, though half the time she is up before the carers arrive! She no longer recognises me or believes she has a daughter. Sometimes she doesn't recognise or believe that Dad is her husband either. She also believes that her parents are still alive & has no understanding of anything.

We have booked for Mum to go into respite for a week in August so that my Dad can come to my daughter's wedding. This will be the first time that Mum has gone into respite & Dad is really anxious about it. He is really worried about getting her there as she can be awkward & stubborn by nature anyway. He's concerned about getting her belongings ready & how to deal with the questions & also about her eating whilst she is in respite & how the care home will cope with that. She is diabetic & has become quite fussy about her food especially her dinners which she hardly eats, but give her something sweet to eat & there is no problem! (She used to be so good with her diet due to the diabetes).
Any advice/tip would be most welcome.
 

Kevinl

Registered User
Aug 24, 2013
7,284
0
Salford
Hello nicholajane, read it and really don't know what to say other than hello and welcome from us all. K
 

Izzy

Volunteer Moderator
Aug 31, 2003
75,666
0
73
Dundee
Welcome to the forum @nicolajane67.

I'm sorry to read about your mum, it must be quite a worry for you. I'm glad you've found this forum as I'm sure others who have had similar experiences will share these with you.

I can understand that your dad must feel anxious. I wondered if it would be worth giving the Admiral Nurse helpline a call. I'm sure they would be able to give you some good tips.

 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,759
0
Newcastle
Hi @nicolajane67 and welcome to the Forum. When my wife went into respite I did not tell her anything. I packed her stuff in secret and on the day went out cycling as usual. I had arranged with her weekly carer/befriender that she would take my wife to the respite centre, again without telling her anything. For subsequent stays I dropped her off myself. The staff recognised her and invited her in for a cup of tea, which made it possible for me to hand over her suitcase with no fuss.

Respite is an important part of looking after someone with dementia. Not saying anything about it in advance helps to lessen the chance of objections or outright refusal.
 

AnnP3108

New member
May 24, 2024
1
0
Hello, my husband was diagnosed with Alzheimer’s last year but has deteriorated quite quickly.
 

Kevinl

Registered User
Aug 24, 2013
7,284
0
Salford
Hello and welcome from me AnnP.
People do progress at different rates, I cared for my wife and mum for over 10 years and where my wife declined rapidly mum was just a bit forgetful.
It always worth getting him checked out for any infection the most common one being a urinary tract infection (UTI) specially if it's a very rapid change. K
 

BendyWendy

New member
Jun 26, 2024
2
0
Hhello,my husband was diagnosed 3 weeks ago he is 61.We have 3 grown up children and 6 grandkids.To say it was a shock is a understatement.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,638
0
Kent
Hello @BendyWendy welcome to the support forum although I’m sure it’s the last place in the world you would choose to be.

Dementia is bad enough but in younger people it`s even more devastating

How is your husband now? Is he still able to work or will he have to retire?

I do hope you will feel supported here. The diagnosis has been made, there is no going back. All you can do is make the most of every day and hope for a slow progression. .
 

CGBiciclista

New member
Jun 27, 2024
3
0
Hi, I'm Chriss, I've just signed up today...I just don't know where to start 😵‍💫 Hoping to get some advice to set up a structured plan to help my Mum.
Thanks in advance xx
 

Slightlytallman

New member
Jun 28, 2024
1
0
Hi,

First time post. I've signed up for some potential advice and as an outlet. I tend to be verbose so apologies for the length.

My nan (86) has been diagnosed with Parkinsons with dementia coming alongside as a side effect.

She's having a lot of trouble with her words and communication in general as a result of both things combined I would guess? She's had a couple speech therapy sessions but she doesn't seem to like/enjoy them very much.

She's doing a lot of the things that come up when you look at symptoms of dementia, constantly fiddling with things, getting everything out and "sorting" it out (which just means moving it around and unsorting it unfortunately), general restlessness and her time seems to be shifted a bit as well.

The docs have said regarding her physical health that she needs to relax more but unfortunately that's never been her mindset and seems to be the one thing that's survived, she gets up very early, always wants everything done her way (so she won't ask someone to do something, she'll try and do it herself), doesn't want to bother anyone, etc.

Our family kinda isn't great at talking to each other or acting the way you'd generally want a family to respond to things like this unfortunately. Her other kids (so my uncles and aunts) are kinda sticking their heads in the sand, acting like everything is normal and my mum is stuck having to act as the only one actually responding as needed, which is adding a lot of stress and obviously, she can't do it all, physically or mentally.

The thing that's prompted me to join the site is that my mum basically just had a breakdown to me about how under it she feels which came as a bit of knock on my head that I need to step up and we need to have a family discussion about what the others can do more of to spread the load.
 

Gosling

Volunteer Host
Aug 2, 2022
2,125
0
South West UK
Hello and firstly welcome @Slightlytallman to this friendly and supportive forum. There is lots of shared experience of dementia to be found here so I am glad you have found us.

I am sorry to read about your Nan , and her recent diagnosis. It's tough for sure. Never worry about being verbose on here - if you need to do a longish post then that's absolutely fine.

It does sound like more of the family need to step up, as you put it, to help care and support your Nan and you! You cannot do all this caring and worrying about your Nan alone. Your own physical and mental wellbeing is important in all of this too. Sadly I have read on this forum before, about family members either disappearing, not wanting to get involved, or denying that there is anything wrong. Please try to do this family discussion sooner rather than later. With this disease, now is the best your Nan will be, and she likely will need more care in the middle to longer term perhaps.
 

Carmel1234

New member
Jun 29, 2024
1
0
Hi, I am on here to get some support with how to keep Mum at home when only carer is Dad and she has no insight into her Dementia so won’t accept carers and Dad exhausted dealing with Mum’s aggression. Thinking of trying live in care and wonder if anyone has experience of this and can share their experiences. 🙂
 

Kevinl

Registered User
Aug 24, 2013
7,284
0
Salford
Well hello and welcome Carmel from me.
I've been in the same position as your dad for over 10 years until my wife passed away and with my mum too, never did the live in care option so I don't know how someone might react to a "stranger" in the house.
Start your own topic and see what people think now you've said hello and have read around.
Good luck. K
 

My Mum's Daughter

Registered User
Feb 8, 2020
760
0
Hi, I am on here to get some support with how to keep Mum at home when only carer is Dad and she has no insight into her Dementia so won’t accept carers and Dad exhausted dealing with Mum’s aggression. Thinking of trying live in care and wonder if anyone has experience of this and can share their experiences. 🙂
Hello and welcome.

Very few of us have experience of live in care as it's so expensive but hopefully someone can help.
 

lynnefisher

Registered User
Jul 1, 2024
17
0
Hi there, good to be here...

After helping my mum with undiagnosed dementia keep on living in her beloved bungalow which my father built for her , she's now in a care home with my first proper visit being yesterday. And that was naturally awful.

I live 80 miles away from her, and my sister and I have been working together after mum had a bad fall 5 weeks ago and broke her ankle in the bungalow. Hospital stay ensued then social worker wanted her to be discharged after about a week into a form of 24 hour care. Then a stressful time ensued. The care home is excellent with good ratings, plenty of experience with dementia but its not her home and yesterday I saw her so resigned, confused, shuffling around on a zimmer frame with a massive moon boot on for her ankle.

Mum was twice assessed by mental health in the past and passed the tests, given the mild cognitive impairment diagnosis with short term memory loss only. After the fall she's a different lady with far worsened dementia and after doing all her own meds at home plus her eye drops, and looking after herself, she was assessed as needing 24 hour care. And they are right, she now does.

I feel as if I've lost the mum who kept ringing me for reaasurance, the mother I ordered a weekly shop for, the mother who I helped with jigsaws and kept chosing new ones for her to do. The dementia has rendered her confused, dependent, vulnerable. Driving away leaving her in the hospital and then driving away leaving her in the care home was heart wrenching. She's been an amazing mother living on her own independently for 19 years after my father died and though I know she's not dead, it feels somewhat like she is.

Sorry I didn't mean to type so much, but again, glad to be here and very best wishes to everyone.
 
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