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AML2023

New member
Jan 28, 2024
5
0
Hi @RLodge and welcome to Dementia Support Forum which is a great place to ask questions, share with people who understand, get good suggestions and let off steam. And there's no need to apologise for lengthy posts as getting it all written down often helps one to cope.
thank you :)
 

Netster

New member
Jan 29, 2024
3
0
Hi to all
I‘m Net here (username Netster). My Dad has suspected dementia but hasn’t been formally diagnosed. It’s reached a crisis point today as I’ve realised my Mum, who suffers with chronic acute pain, is under way too much burden and can’t cop. So I think we need help/advice from experts and maybe need practical care/intervention.
I had been planning to ask if i ought to push my parents to get a formal diagnosis for Dad. Though we’ve suspected dementia for about one year, there’s been resistance to seeing a doctor about it. But I now think that’s not my top priority.
I am worried about my parents physical safety as well as their mental health. Mum said she’s had trouble getting Dad in and out of the shower, as he struggles to stand up for long enough. So I think I need occupational health maybe? Or at least to buy a bath chair?
The house is full of trip hazards as no one has the time, energy or ability to clear the clutter that accumulates. I have offered but Mum doesn’t want to burden me as I work full time and have a young daughter and husband. But Dad particularly is prone to tripping, so I need to do something but I’m anxious about what - as I don’t want my parents to feel betrayed or told off.
I think I’ve been in denial about it really being dementia as Dad always seemed fine when he spoke to me until this week. Mum would say he is so bad he forgets who she is when they’ve been married 55 years, but yet he always remembered my name and my young daughter’s name and my husband’s. But this week, suddenly it’s changed and Dad has been confused saying it’s morning when I’ve rung to say goodnight, and he’s saying they have friends coming round when they’ve not had visitors since pre-COVID and dad has social phobia so hasn’t socialised for 30+ years.
Any advice most welcome on how best to help them and not jeopardise my relationship with them - but also not be neglectful, and keep ignoring the situation till an accident happens or it’s difficult to get help. I have LPAs for them both, and have made contact with their doctors surgery today, but as yet I haven’t pushed for diagnosis. Is that the first step? Thank you.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,698
0
Kent
Welcome @Netster

It`s good you have LPA for your parents. It enables you to make decisions in their best interests and the authorities will attend to you.

I would push for a diagnosis. They are obviously living in a state of flux and unable to do anything about it for themselves.

I would discuss it with your mum rather than your dad and tell her how concerned you are for them and want to try to get some help to make life easier for them.
 

VioletRedDog

New member
Jan 30, 2024
2
0
Hi there!

I guess you can call me Vio here. I'm 30, female.

My mom is 71 and has vascular dementia. She was a fairly recent breast cancer survivor so I just thought it was the 'chemo brain' going on for way too long, until my family and I realized it wasn't.

My mom was always what I would call a 'bawse', for lack of a better term. She worked as a stock broker for many years, was incredibly smart, beautiful, classy, charismatic, perceptive and a bit artistic too. I looked up to her a lot.

At least, that's how I used to know her. The person she is now just doesn't feel like my mom anymore. She barely does anything all day long except sit there and doze off to whatever's on tv, and even then she's not that engaged. She has little to no initiative, and that perceptiveness I once saw is totally gone. Working memory is out of the question, and even her handwriting, once neat, resembles how someone would write with their non-dominant hand. I feel like she has a lot of trouble reading stuff too even though she had laser eye surgery and has glasses that she never wears. When one thinks about how much of day to day life today involves reading, especially off a screen, it's a lot of trouble for her and it's isolating too.

Whenever I try to get her to tell me what exactly what she has trouble with, I feel like she acts like a teenager would if they wanted a parent to just go away, if that makes sense. As a result it's hard for me to adapt to what she needs accordingly, and it's really frustrating for her and for me.

If something is inconveniencing her or bothering her, she doesn't do anything about it.
All this isn't the mom I know.

I find myself feeling frustrated at the imposter walking around in my mom's skin, even though I tell myself it's not her fault.

I know all this is hard on my dad too, and my older sister, even though she seems to be less bothered by the whole thing than me, but I digress. It makes me terrified of getting older, and hasn't been good for my mental health even though I know I should be a good, patient, compassionate daughter that's ready to drop everything and support my mom no matter what.

Anyway that's why I'm here.

I just don't know what to do
 

Gnome

New member
Jan 30, 2024
5
0
Hi, I'm a fluffy blanket whose husband has vascular dementia, middle to late stage. He had a stroke and having recovered slightly, he developed vascular dementia. He is at the incoherent babbling stage (all night long), doesn't walk well at all, can't perform basic functions of living and his daytime speech is reducing and difficult to understand. His appetite is reducing from having always been a chap who loved his food.

We have two small dogs, and an adult son who lives in the same town as us.

I like to cross stitch (although I don't get the time any more), and crochet (ditto) and reading is a lost art because I don't get enough time to get into a book. I do have talking books but I tend to use those to drown out the night time babbling (I check at intervals that he doesn't need actual help with anything) and that way I can doze sometimes.

And that's us at the moment....
You are an inspiration . I can identify with lack of time to follow our interests. It’s not easy. Do you feel you are “on the go” all day? Sending good wishes.
 

Gnome

New member
Jan 30, 2024
5
0
Hi there!

I guess you can call me Vio here. I'm 30, female.

My mom is 71 and has vascular dementia. She was a fairly recent breast cancer survivor so I just thought it was the 'chemo brain' going on for way too long, until my family and I realized it wasn't.

My mom was always what I would call a 'bawse', for lack of a better term. She worked as a stock broker for many years, was incredibly smart, beautiful, classy, charismatic, perceptive and a bit artistic too. I looked up to her a lot.

At least, that's how I used to know her. The person she is now just doesn't feel like my mom anymore. She barely does anything all day long except sit there and doze off to whatever's on tv, and even then she's not that engaged. She has little to no initiative, and that perceptiveness I once saw is totally gone. Working memory is out of the question, and even her handwriting, once neat, resembles how someone would write with their non-dominant hand. I feel like she has a lot of trouble reading stuff too even though she had laser eye surgery and has glasses that she never wears. When one thinks about how much of day to day life today involves reading, especially off a screen, it's a lot of trouble for her and it's isolating too.

Whenever I try to get her to tell me what exactly what she has trouble with, I feel like she acts like a teenager would if they wanted a parent to just go away, if that makes sense. As a result it's hard for me to adapt to what she needs accordingly, and it's really frustrating for her and for me.

If something is inconveniencing her or bothering her, she doesn't do anything about it.
All this isn't the mom I know.

I find myself feeling frustrated at the imposter walking around in my mom's skin, even though I tell myself it's not her fault.

I know all this is hard on my dad too, and my older sister, even though she seems to be less bothered by the whole thing than me, but I digress. It makes me terrified of getting older, and hasn't been good for my mental health even though I know I should be a good, patient, compassionate daughter that's ready to drop everything and support my mom no matter what.

Anyway that's why I'm here.

I just don't know what to do
I can identify. My husband cannot concentrate for more than four or five minutes. His eyesight is failing and he spends most of the day in front of the TV, often asleep. He used to have a phenomenal memory and is currently very confused. Thought I was his Mum. But he may have a Urine infection - awaiting results as he is currently in Respite, I should be bringing him home today but currently coping at home alone with asthma attack.
Sadly there are too many of us “coping” and one feels isolated from friends and family. My four boys all live a distance away. Australia, Spain, and the other two have their own problems. Dementia is such a cruel disease.
It is good to write one’s thoughts but solves nothing. I try to count my blessings.
Gnome
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,698
0
Kent
Welcome @VioletRedDog

I think everyone here who has had a parent with dementia understands the challenge of an independent and upright person becoming needy and vulnerable.

However, no one would wish this on their worst enemy. Dementia is one of the few non self inflicted illnesses and no one would wish it on themselves.

If caring and taking responsibility is too much to ask, the best anyone can do is try to make sure the person with dementia gets as much support from the services as is available to help take the burden off the carer.

This forum is unable to give you physical support but I hope it will help to give you emotional support and understanding
 

stevec1

New member
Jan 30, 2024
3
0
Hi,

My name is Steve and my Dad has Alzheimer's Dementia and my mum was his primary carer.

She did her best to look after him but after Covid had enough and so we made the decision to bring carers in to help him get up in the morning. Unfortunately the caring took its toll along with lung cancer, heart valve replacement & diabetes!

All resulting in a couple of falls almost 3 weeks ago and a hospital admission where she had 2 serious strokes while there and will die in the next few days. We were able to get my Dad into a care home over the weekend she went into hospital and has been there for the last 3 weeks.

Now we need to decide whether he goes to see her in the hospice and whether he goes to the funeral or not. So looking for advice & recommendations.
 

HarrietD

Staff Member
Staff member
Apr 29, 2014
10,113
0
London
I'm so sorry to read about your situation @stevec1 and particularly about your mum. I'm sure others will have some advice for you soon - I hope you find lots of understanding and support on here during such a difficult and sad time. Please know that you're not alone.
 

Veritas

Registered User
Jun 15, 2020
332
0
Hi,

My name is Steve and my Dad has Alzheimer's Dementia and my mum was his primary carer.

She did her best to look after him but after Covid had enough and so we made the decision to bring carers in to help him get up in the morning. Unfortunately the caring took its toll along with lung cancer, heart valve replacement & diabetes!

All resulting in a couple of falls almost 3 weeks ago and a hospital admission where she had 2 serious strokes while there and will die in the next few days. We were able to get my Dad into a care home over the weekend she went into hospital and has been there for the last 3 weeks.

Now we need to decide whether he goes to see her in the hospice and whether he goes to the funeral or not. So looking for advice & recommendations.
I am so sorry you are facing this awful dilemma and the loss of your mother.

I'd suggest you ask the care home staff first what they think about him visiting her. So much will depend on how unsettled he has been by the move to a care home and whether he is able to remember anything about what is happening. Is your mother able to express a view about whether she wants to see him?

As for the funeral, I'd wait and see. The key decision now is whether he should visit her and if so how that is to be facilitated.
 

Ellie2018

Registered User
Jun 26, 2023
271
0
Sendup you lots of good wishes, that’s such a lot to deal with. I’m not an expert but I think if depending in how your dad is, it could make matters worse. They say with Alzheimer’s that each time they are reminded of losing someone, they experience the loss every time. And certainly with my husband, it would become about him rather than about the lost loved one and if that’s the case you might resent it later. Lots of people here will give their experience. Whatever you decide it’s what you felt was right at the time so that would make it right
 

Izzy

Volunteer Moderator
Aug 31, 2003
75,841
0
73
Dundee
Welcome to the forum @LizzieD.

I’m sorry to hear about your husband. You‘ve found the right place to find understanding and support. You’ll always find someone here to listen.
 

Gosling

Volunteer Host
Aug 2, 2022
2,165
0
South West UK
Hello Lizzie @LizzieD and firstly welcome to this friendly and supportive forum from me also.
I am sorry to read of your husband's Alzheimer's diagnosis.
There is a wealth of shared experience of dementia to be found here, and members really do want to help. So do have a good look around and ask any particular questions you may like to.
 

bagrat

Registered User
Nov 22, 2006
22
0
North Yorkshire
Welcome to Dementia Support Forum :)

However you have been affected by dementia, our community is a place to get support from others.

Say hello

This is our welcome thread - the place many members start. Our volunteers and regular members are here to say hello to you and to welcome you to our community.

This thread is for you to say hello and tell us a little bit about yourself, and your connection to dementia.

Whatever you're facing today, we hope you find our community to be helpful and supportive.

How to use the community

You can find out how to navigate the community here.

Any questions?

If you have any questions, you can email us on DementiaSupportForum@alzheimers.org.uk or Use our Contact Form - we're here to help.
Just wanted to say hello,
I last posted about 2007 when struggling with various issues because of father-in-law's vascular dementia. Now my husband has developed symptoms which are very clear to me, but as a high functioning individual he is adept at covering his tracks with others. The problem obvious to all is he is constantly losing words, not just names, don't we all, but common nouns and adjectives. Today he was sending an email and couldn't spell "shooting" as in troubleshooting and got very frustrated. I could go on. I'm a retired nurse but patience is not one of my virtues with family members and I am trying so hard.
 

jennifer1967

Registered User
Mar 15, 2020
25,509
0
Southampton
Hi to all
I‘m Net here (username Netster). My Dad has suspected dementia but hasn’t been formally diagnosed. It’s reached a crisis point today as I’ve realised my Mum, who suffers with chronic acute pain, is under way too much burden and can’t cop. So I think we need help/advice from experts and maybe need practical care/intervention.
I had been planning to ask if i ought to push my parents to get a formal diagnosis for Dad. Though we’ve suspected dementia for about one year, there’s been resistance to seeing a doctor about it. But I now think that’s not my top priority.
I am worried about my parents physical safety as well as their mental health. Mum said she’s had trouble getting Dad in and out of the shower, as he struggles to stand up for long enough. So I think I need occupational health maybe? Or at least to buy a bath chair?
The house is full of trip hazards as no one has the time, energy or ability to clear the clutter that accumulates. I have offered but Mum doesn’t want to burden me as I work full time and have a young daughter and husband. But Dad particularly is prone to tripping, so I need to do something but I’m anxious about what - as I don’t want my parents to feel betrayed or told off.
I think I’ve been in denial about it really being dementia as Dad always seemed fine when he spoke to me until this week. Mum would say he is so bad he forgets who she is when they’ve been married 55 years, but yet he always remembered my name and my young daughter’s name and my husband’s. But this week, suddenly it’s changed and Dad has been confused saying it’s morning when I’ve rung to say goodnight, and he’s saying they have friends coming round when they’ve not had visitors since pre-COVID and dad has social phobia so hasn’t socialised for 30+ years.
Any advice most welcome on how best to help them and not jeopardise my relationship with them - but also not be neglectful, and keep ignoring the situation till an accident happens or it’s difficult to get help. I have LPAs for them both, and have made contact with their doctors surgery today, but as yet I haven’t pushed for diagnosis. Is that the first step? Thank you.
if its sudden, maybe your dad has a uti which will need the doctor.
 

Louise7

Volunteer Host
Mar 25, 2016
5,008
0
Just wanted to say hello,
I last posted about 2007 when struggling with various issues because of father-in-law's vascular dementia. Now my husband has developed symptoms which are very clear to me, but as a high functioning individual he is adept at covering his tracks with others. The problem obvious to all is he is constantly losing words, not just names, don't we all, but common nouns and adjectives. Today he was sending an email and couldn't spell "shooting" as in troubleshooting and got very frustrated. I could go on. I'm a retired nurse but patience is not one of my virtues with family members and I am trying so hard.
Hello @bagrat welcome back to the forum, although sorry to hear that your husband has now developed dementia symptoms. If you haven't already done so it may be helpful to get him to see the GP to rule out any other health problem that may be causing the symptoms. You will find friendly support and a listening ear here from people who understand.
 

Kevinl

Registered User
Aug 24, 2013
7,379
0
Salford
Just wanted to say hello,
I last posted about 2007 when struggling with various issues because of father-in-law's vascular dementia. Now my husband has developed symptoms which are very clear to me, but as a high functioning individual he is adept at covering his tracks with others. The problem obvious to all is he is constantly losing words, not just names, don't we all, but common nouns and adjectives. Today he was sending an email and couldn't spell "shooting" as in troubleshooting and got very frustrated. I could go on. I'm a retired nurse but patience is not one of my virtues with family members and I am trying so hard.
Hiy
 

Netster

New member
Jan 29, 2024
3
0
if its sudden, maybe your dad has a uti which will need the doctor.
Thanks - I hadn’t thought of that. It’s not completely outs of the blue, but it definitely seems to have accelerated this last 2weeks. I’ll contacts the GP and ask for advice.
 
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