• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Welcome to Dementia Talking Point! Find out more and say hello.

Status
Not open for further replies.

Mothermave

New member
Jan 14, 2021
3
0
Hello
i do hope someone gets to see this post. (I think I am quiet it savvy but this site has me flummoxed)
I am in a bit of a hole because although my husband is showing some clear signs of dementia he did not get a diagnosis because his CT scan did not show enough damage to his brain. the diagnosis was depression only.
He is so awful to live with I am seriously considering leaving him.
On the other hand when I treat him as though he does have dementia things are a bit better.
I read about difficulties with computers, tv remotes, short term memory loss, massive apathy, delusions about things he thinks he's done and it is the kind of behaviour he is displaying. I get asked every day about what the plans are for the day because left to himself he does nothing. I have recently had to remind him to clean his teeth or have a shower. if he has to do any kind of even slightly complicated task he gets agitated/angry. He is always asking me to sort things out for him and expects me to stop in the middle of whatever i am doing to help him. He also shows signs of paranoia about things.
So what is the opinion on here? Should i keep battling on with him and the medics until he does eventually get a diagnosis or should I sack it and go and lead a better life on my own?
 

I thank you for the years

Registered User
Oct 5, 2021
13
0
Thank you to all that replied to my request for clarification. I feel better now. Whew! I really thought I was losing perspective.
I am certain that following this forum will be insightful and instructive. There are times when I wished that we lived "across the pond" to receive better health care than we have here in U.S. Why we can not get it together to provide a universal health care system troubles me, for everyone's sake.
I do not have any reliable assistance or advisors nearby so this forum is my great hope (no pressure here). All ready "I thank you for the Years" has offered me somethings to think about. The doctors did not raise any additional concerns about the headaches, shooting pain in head and hand or the difficulty walking, so I assumed this is all part of the dementia symptoms. The staggering walk is obvious to anyone and I have mentioned the headaches several time to the doctors with get little reaction or advice, which leaves me thinking this is normal and we just live with it. This is when I wish we lived with a better health care system. But then is any health care system really ideal? Perhaps if it were a prefect world where doctors really cared and provided the best services we would have less need for forums such as this....??
I also need to go though our legal files and see if we do have a DNR in place. I know in the past when we could normal conversations about end of life needs, she made it very clear, as I did, that we did not want a life that required mechanical/medical support. We (I) do not want to have any doubts if that time should arrive and I need to explain myself to family or doctors.
Jeez, remember when we were all young and full of hope and promise and no concerns about these matters? Seems so long ago now. Friends and family are all slowly disappearing from our lives...... Well, as they say, Buck Up Boy! Get on with it! Stay the course and all will work out. Easier said than done.

Hi GDC - Power of attorneys are not the same thing as DNRs. If you Google “power of attorney us alzheimers” some relevant information from the Alzheimer’s Association in the US should come up. I tried to cut and paste the link into the post but because I have not posted much before I do not yet have the “power“ to do this.

Best wishes!
 

Pwlldu

New member
Oct 6, 2021
1
0
Hello. I have a partner who has vascular dementia. I would like to link up with other people in a similar position
 

karaokePete

Registered User
Jul 23, 2017
6,279
0
N Ireland
Hello
i do hope someone gets to see this post. (I think I am quiet it savvy but this site has me flummoxed)
I am in a bit of a hole because although my husband is showing some clear signs of dementia he did not get a diagnosis because his CT scan did not show enough damage to his brain. the diagnosis was depression only.
He is so awful to live with I am seriously considering leaving him.
On the other hand when I treat him as though he does have dementia things are a bit better.
I read about difficulties with computers, tv remotes, short term memory loss, massive apathy, delusions about things he thinks he's done and it is the kind of behaviour he is displaying. I get asked every day about what the plans are for the day because left to himself he does nothing. I have recently had to remind him to clean his teeth or have a shower. if he has to do any kind of even slightly complicated task he gets agitated/angry. He is always asking me to sort things out for him and expects me to stop in the middle of whatever i am doing to help him. He also shows signs of paranoia about things.
So what is the opinion on here? Should i keep battling on with him and the medics until he does eventually get a diagnosis or should I sack it and go and lead a better life on my own?
During the diagnosis process for my wife the CT and MRI scans did not show sufficient damage to explain what I was reporting to the Consultant(I noted every behaviour and relayed the information at the consultations). Due to the apparent anomaly the Consultant ordered a SPEC scan and it was this deeper scan that showed the full extent of the brain damage and led to the diagnosis.

These deeper scans aren't usually offered first because of their cost. However, it's worth pursuing as a diagnosis can open pathways to medication and help. Having said that, taking notes and being persistent is always helpful as help can be slow to be offered.
 

karaokePete

Registered User
Jul 23, 2017
6,279
0
N Ireland
Hello. I have a partner who has vascular dementia. I would like to link up with other people in a similar position
Hello and welcome. You have come to the right place for what you seek so stick around. It's useful to have a good read at the forums and ask any questions you may have, or join in conversations.
 

Mothermave

New member
Jan 14, 2021
3
0
During the diagnosis process for my wife the CT and MRI scans did not show sufficient damage to explain what I was reporting to the Consultant(I noted every behaviour and relayed the information at the consultations). Due to the apparent anomaly the Consultant ordered a SPEC scan and it was this deeper scan that showed the full extent of the brain damage and led to the diagnosis.

These deeper scans aren't usually offered first because of their cost. However, it's worth pursuing as a diagnosis can open pathways to medication and help. Having said that, taking notes and being persistent is always helpful as help can be slow to be offered.
Thank you for this reply. I have notebooks full of examples of his behaviour and reading your reply I am encouraged to go back to the GP again with this evidence and press for more action.
 

Lily Pond

New member
Oct 10, 2021
1
0
Hello, my husband has dementia. I am a retired RN who feels helpless. He has started whispering speech. What's next? If I am prepared I can deal with it better.
 

Cat27

Volunteer Moderator
Feb 27, 2015
12,262
0
Merseyside
Welcome to TP @Lily Pond
unfortunately, we can’t predict what’s next as dementia is different in each person.
Please keep posting as you’ll get lots of support here.
 

Splash

New member
Oct 12, 2021
6
0
Hello,this is my first time on the forum
I have been reading a lot of previous posts this afternoon and feel that I have been helped by many and also worried by what I know is to come.
My husband is 85 was diagnosed with Alzheimer’s and Parkinson’s 4 years ago.His short term memory is really bad and although he has no tremors he is frail and unsteady.Like many he does not accept the Alzheimer’s diagnosis and insists he is ”just old”.H thinks he can still do things as well as he could 30 years ago.
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,863
0
Nottinghamshire
Welcome to Dementia Talking Point @Splash .

I’m glad you’re finding the forum helpful. Try not to worry about what may come, everyone with dementia is different and I had good times as well as bad on my dad’s journey. When you’re ready please join in the chat and feel free to post.
 

Barangela

New member
Oct 15, 2021
1
0
Hello. I have a partner who has vascular dementia. I would like to link up with other people in a similar position
Hi, my partner was diagnosed with vascular dementia 3 years ago, would also like to link up with similar to exchange advice tips on coping and really just to chat.
 

nae sporran

Volunteer Host
Oct 29, 2014
8,382
0
Bristol
Hullo and welcome, @Barangela. Sorry your partner's diagnosis bring you to us. My partner was diagnosed with vascular dementia about 9 years ago, so I know some of the things you are dealing with. This is certainly a good place for advice and support, so stick around and post questions or anything you want to talk about on https://forum.alzheimers.org.uk/forums/i-have-a-partner-with-dementia.69/ when you feel ready. The tea room is always good for a chat when you just need to relax with others in the same boat.
 

Abysmal

New member
Oct 17, 2021
2
0
Hi, my husband was diagnosed with putative primary progressive logopenic aphasia in January 2020. His condition has progressed and he is now I think moving from a moderate to severe stage of his condition. We were engaged for nine years and only got married in September while we had the chance before he lost capacity, really to try and make some lovely memories. His condition has raced forward this year so much so that in the time it took to arrange the wedding, just us and two witnesses his cognition has really dropped off. We had a party two weeks ago for a small (30) group of people (he had wanted a big wedding with honeymoon etc) unfortunately the following day we found out that a guest had COVID and the pair of us and four others contracted the virus. Since then he has become incoherent, barely lucid, urinates all over the bathroom at night. His wandering at night is getting worse and he has been refusing to get changed for bed or dressed in the morning. The moon always affects him and he becomes worse with a full moon. Two moon cycles ago he went ‘mad’ in the night and for four hours destroyed our front room.
We have very little support from family, he has five children (two of which have nothing to do with him) three live over twenty miles away and probably see him once in two months sometimes less than that. I have a daughter who lives close by but although she helps me when she can with shopping type tasks she does not get involved with my husband (she doesn't understand dementia) she was an adult when we met and I don’t think she should be expected to help with him. I am finding it increasingly difficult caring for him, particularly when he gets agitated when I don’t understand what he is saying and when he is wandering and rambling. I get very little sleep as I have to get up with him each time he goes to the toilet so that he doesn’t urinate in the bedroom. I’m fully aware that things will get worse (I retired last year as he was getting anxious and scared when he was alone while I was working) but don’t know how or where I would get support if I needed it in the night if he should have another episode like he did a couple months ago.
We are supposed to be going away for two nights this week and staying in bed and breakfast as a special treat. We usually go away in the camper but thought it might be easier b&b but with the last two weeks behaviour I’m seriously considering paying the bill but just not going! Im also finding it difficult almost being a recluse now that I can’t just nip out for a coffee with friends etc. I can’t even get a hair appointment without taking him with me! My husband is 67 and I’m 61, up until November I was leading an active life, running, gardening (allotment) socializing etc I sound like I feel sorry for myself, I don’t but it’s very difficult to keep going some days when all I see is my husband who now cannot have an educated conversation with me. I try and keep him occupied but it is emotionally draining as he now has a very short attention span.
 

karaokePete

Registered User
Jul 23, 2017
6,279
0
N Ireland
Hello and welcome @Abysmal

I recognise a bit of what you write as my wife has dementia with aphasia and I'm used to the loss of conversation and the incoherent ramblings. I had to cancel a planned holiday a couple of years back and just took the financial hit rather than try to deal with my wife while away from home.

We were in our early 60's when my wife was diagnosed so I understand the loss of an active life aspect for both we carers and our spouses.

The one piece of advice I would give is to make full use of your GP - for both of you.

Keep posting as you will get support here
 

Abysmal

New member
Oct 17, 2021
2
0
Thank you, unfortunately our GP surgery is so bogged under it’s difficult to get through to them. They use ask my GP but it can be weeks before a response.
 

Aggiboo

New member
Oct 20, 2021
1
0
Hi I’m taking care of mum who has dementia I was advised to join this group but am a bit of a technophobe so not sure what to do
 

Sarasa

Volunteer Host
Apr 13, 2018
3,888
0
Hi @agiboo and welcome to Dementia Talking Point. Your find this a very friendly and supportive place. Introducing yourself on this thread is a great start. You might like to start your own thread in this forum https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/. Just click on the Blue Post New Thread button near the top on the right to start a new thread. How are you managing looking after your mum, do you have carers coming in or are you doing it all yourself?
 

heffy

New member
Oct 24, 2021
1
0
Hi
Need some ideas on how to label up a recycling bin that has suddenly become a bin for everything. Tried leaving the council what to put in a bin wheel thing, but person concerned thinks they are getting it right, I have emptied it out totally once already in the last month and checked it only two days ago.

This is the tip of the iceberg, but the person concerned used to be so good at this and it is probably my reaction to what is happening is coming out in this one thing as I try really hard to get this right myself.
 

I thank you for the years

Registered User
Oct 5, 2021
13
0
Hi
Need some ideas on how to label up a recycling bin that has suddenly become a bin for everything. Tried leaving the council what to put in a bin wheel thing, but person concerned thinks they are getting it right, I have emptied it out totally once already in the last month and checked it only two days ago.

This is the tip of the iceberg, but the person concerned used to be so good at this and it is probably my reaction to what is happening is coming out in this one thing as I try really hard to get this right myself.
I feel your pain heffy! I did make 3 different signs for the blue, green and brown bins that my mother has stating what should go in each bin. I used large font on an A4 sheet of paper for each of one. I put each sign in one of those plastic wallets for ring binders which usually come in packets of about 20 and then sellotaped each sign in the inside of the lid of the bin so that it could be seen when the bin lid is opened. Alas all my best Blue Peter skills came to naught as my Mum has carried on putting stuff in the wrong bin and I periodically end up head first in her wheelie bins trying to extract rogue items. Hopefully you will have more luck!
 

Gilly1952

Registered User
Jun 19, 2017
24
0
Kent
Hi
Need some ideas on how to label up a recycling bin that has suddenly become a bin for everything. Tried leaving the council what to put in a bin wheel thing, but person concerned thinks they are getting it right, I have emptied it out totally once already in the last month and checked it only two days ago.

This is the tip of the iceberg, but the person concerned used to be so good at this and it is probably my reaction to what is happening is coming out in this one thing as I try really hard to get this right myself.
I have similar problems, my husband has vascular dementia. I've tried all sorts of ways to stop him putting yogurt pots in the food waste container, or things that can't be recycled into the recycling bin. I've tried notices but they don't seem to work. I think the bit of his brain that helps him to understand what he's read is damaged. I've tried putting notes and reminders all around the house for all kinds of things e.g. how to put the TV or radio on, a reminder in the bathroom to clean his teeth when he has a wash. Some were successful in the earlier stages of his dementia but now his dementia is more advanced the notes are of no help whatsoever. He can read the notes but he can't then follow through with whatever action is required. Try notes by all means, they may work but don't be disappointed if it makes no difference. I've come to the realisation that there are no easy solutions for some problems.
 
Status
Not open for further replies.

Members online

No members online now.

Forum statistics

Threads
121,559
Messages
1,780,462
Members
72,575
Latest member
Gittel