Welcome to the vascular dementia forum

[jasperty]

Moved Into Home Yesterday

Hi everyone,

Mom moved into home yesterday straight from hospital, phoned yesterday and they said she was asking for me and when she was going home. Went to see her today and took the baby, pleasantly surprised, seemed quite good and was happy to see us both, asked is she was stay there and then said until I die! I said if you like. Liked her room and the fact we had moved her bedroom furniture from home and her bit and pieces, photographs etc. Liked ther food and was making friends, although she did say some of the moaned a bit. My hubby is taking her to have her hair done tomorrow at her usual hairdresser and she was pleased about that.

It is very convenient as it is only down the road from where I live. Only 16 ladies there at the moment, new one coming next week with max. 21. quire nice as it is not too big and feels like someones home.

I was really worried about going to see her, but feel quite relieved now that she seems quite settled and I feel she is safe and they said she had eaten all her lunch, carers very nice.

Hope this might others facing the same inevitable problem


Regards




Pat

 

[Lila13]

Glad you have found a suitable place for her so near you.

Lila

 

[clymout]

Vascular Symptoms?

Hello all,

I am hoping someone can shed some light on my mum's condition. She has been diagnosed with AD recently but for 6 months I have been reading up on VAD and been certain this is her diagnosis. She started waking at night, dizzy, weak limbed and confused. Sometimes her left eye would appear slightly dropped. This first happened over two years ago but in the past six months it's increased to the point of almost weekly to varying degrees. She has become gradually blind in her left eye and suffers a great deal of pain in it as well as left sided head pain and neck pain. Her dementia has worsened significantly with each episode and her language has been affected (I've learned this is controlled by the left side of the brain). Even since Christmas, she has worsened and is now permanently dizzy, in pain and confused. Yet another trip to the GP has just resulted in a increase in her meds, something to help the dizzyness (Betahistine) and Co-codamol for pain. The symptoms have completely debilitated her. She no longer feels well enough to go out or has any kind of life. She is being treated for depression by her psychiatrist but I really do feel it's the physical problems making her miserable more than anything. Does anyone recognise these symptoms as being an effect of VAD? The GP is suggesting loss of brain tissue and although a scan last May didn't reveal any vascular disease, only bone thickening, she has had many episodes since then. We have another appointment with her consultant psychiatrist soon but these physical symptoms, more than her dementia are totally ruining her quality of life. Any ideas would be much appreciated. (She's 78 by the way, has never smoked, isn't overweight or has diabetes etc).

Kindest regards,


Jo

 

[Jo Co]

Reply to clymout

Hi Jo,

My father has been diagnosed with VasD and has some surprisingly similar symptoms to those you have described. His background is that he first alerted to high-blood pressure when he went for a routine eye test maybe 15 years ago. His optician noticed a problem in his right eye and told him to get a referral by his GP to a opthalmologist(?). He was then told that he had had the equivalent of a mini-stroke in a blood vessel in his eye, which resulted in the almost total loss of sight in that eye, the cause being high-blood pressure. Since then he has taken amlodopine and aspirin daily plus eye drops for glaucoma.

Since his diagnosos with VasD, I have noticed that following a restless night his 'good' eye always looks very red and droopy and ususally his confusion level is increased. He is also quite drained and usually has a quiet day in bed, following a bad night. I wouldn't say I can predict when these will happen or that they follow any pattern, but the effect does.

I do remember one particularly dizzy spell he had almost 2 years ago, when he phoned me to say he couldn't get out of bed. I went over to stay with him for the day until the GP could get there. I found he was just totally unbalanced and had what you describe as weak limbs plus dizzyness. The GP said it was probably one of those things we would never find out the cause. Since then I have questioned the GP again as to whether he though it could have been Dad having a mini-stroke and he agreed it probably was.

Dad also takes medication for depression and has restarted Aricept too. At the moment things are ticking along and I'm really pleased he is back on Aricept, it makes a big difference to him. His speech is also the biggest problem we have to overcome, as while he was off Aricept we could hardly make sense of a single word.

I don't know if my ramblings help you, but I hope you get on OK when you go back for your other appointments with your Mum. Will your doctors/psychiatrists do home visits - Dad's have been out to the house and I think they get a clearer impression of the daily situation. I know Dad is always a bit on edge when we go to the clinics, mainly because you always have to wait so long and it's difficult to explain why.

Best wishes,

JoCo

 

[clymout]

Hi JoCo,

Many thanks for your reply! At last I've found someone with a similar experience! I can agree with everything you say symptoms wise and mums eyes are also really red and sore looking with her left droopy too. She has though, had thorough eye exams over the years, the last one being two or three months ago and from what I've gathered was diagnosed with age related mascular degeneration that causes gradual blindness. This was also diagnosed at the eye infirmary over two years ago and although I wasn't there, there was no mention of hypertension causing her eye problems. Mum's B/P has also always been steady. She took blood pressure tablets in her 60's but came off them a number of years ago on GP advice and regular checks havn't resulted in her having to go back on them.

We are off to her first visit to the day hospital now so fingers crossed she likes it!

Nice to hear from you.


Jo

 

[clymout]

Oops, I almost forgot - our local old age teams do home visits as a matter of routine. Much better I would think than a clinical setting. (Even though mum is now pretty much living with us as she's really not coping alone!)

 

[Helena]

The symptoms do certainly sound very typical of Vascular Dementia but i am surprised that with that level of frequency theres nothing showing on a Cat scan
because my Mothers Cat scan soon showed the infarcts we knew must have been happening for 5 years but the doctors had sworn there was nothing wrong


Maybe the bone thickening is Pagets Disease and thats the cause of the problem i knew someone with that

 

[clymout]

Thanks for your reply Helena, much appreciated. Since her last episode, mum has made an improvement at last and hasn't had a dizzy spell for nearly a week. She is looking and feeling much better.

She's adamant she doesn't want another scan so I don't know if we'll ever get to the bottom of it. I'll see what her psychiatrist says next week.

I will go and google "Pagets Disease" now. Thanks for the tip!


Jo

 

[hornelindsay27]

My story

My Dad, having shown symptoms for the last 6 or 9 months, has finally been diagnosed with vascular dementia. Appart from the obvious pain that gives me as his daughter, and I am only 28, it has been a nightmare trying to find out what was wrong with him. My mother and I knew he was ill, from around 6 months ago, and accomopanied him to the doctors. However it took them 6 months to refer him, and get the results from a brain scan. During that time he was confused, hallucinating, and depressed. My mother and I were also in a bit of a mess. Having experience of Alzheimer's patients, we knew that was not the problem, but none of the doctors seemed to have a clue about anything else. There should be more awareness.

 

[hornelindsay27]

Oh, a PS

My Dad has a habit of seeing imaginary cats and dogs...I sometimes find him patting and talking to washing! Anyone else found this?

 

[Grannie G]

Welcome to TP Lindsay,

I hope you will browse through the different sections of the Forum and read the posts. I`m sure you will find many you will be able to relate to, even though we all know no two cases are the same.

Do not feel you need to stay just in the Vascular Dementia Forum, many people have both Alzheimers and Vascular Dementia. The most used Sections are Support for Sufferers and Carers, Younger People, and the light hearted Tea Room, where we have a bit of fun.

Take care

 

[Amy]

Hiya Lindsay,
Although the Alzheimers Society is named as it is, it actually covers all forms of dementia. My mum has vascular dementia too - but dont think I have ever posted on this forum before!! Thing is, no matter what the cause of the dementia, as carers we all experience similar problems and heartaches.
I was 30 when mum showed signs of short term memory loss - and I started to worry - was several years later when we got a diagnosis - and that was only cos I insisted that it was not sufficient for the doctor to say "It happens to us all as we get older"!!!
Sorry that you have had to join us on here - cos it means you have more heartache to come; but you will find that it is a wonderful caring community, and I have found it the best source of information that there is on dementia. And people here understand, cos they are walking a similar path to you.
Do post again.
Love Helen

 

[Kayla]

Dear Lindsay,
My Mum started having hallucinations and saying strange things, about three years ago, and probably her short term memory and sense of tme had been affected for a year or so before this. From being an intelligent and caring woman, she became unable to cope in her own home and indeed was frightened at night because of seeing strange men watching TV in her lounge.
The final straw was when she was very distressed after having thought my father, who died seven years ago, had come in the front door and gone upstairs. She was so disappointed when she went to find him and he wasn't there. The family doctor arranged a home visit from a specialist doctor and she was prescribed Haliperidol, which did help a little.
She decided to go into a Care Home because her rheumatoid arthritis made it very difficult for her to cope at home by herself, despite support from a Carer, family and friends. It was a lovely family run home and she was much happier than previously and the routine gave her a sense of time again. She could still attend her local Church and see her Scrabble friends.
A fall resulting in a broken hip meant she had to go into a local Nursing Home, where it took her ages to settle down again. However the staff were kind and caring and she was able to make a good friend and they spent most days together in her room. She couldn't walk and her joints were very painful, mainly because of the RA. She could still hold a reasonable conversation but would drift off and say strange things as if she was in a different time zone. She seemed settled and contented and enjoyed having visits.
Sadly she had a heart attack on the 7th June and died soon after arrival in hospital, but I don't think she could have suffered. The immobility and heart attack were unrelated to the Vascular Dementia, wich could have been caused by Mum's long term use of steroids for the RA. I heard yesterday that there is a new drug for RA, which if it had been available 26 years ago, could have prevented much of Mum's suffering. It is a comfort to know that future generations won't have to suffer the pain of RA like my Mum did for 26 years.
Kayla

 

[arandas]

Having to put Dad into care home



Hi All,

I've read through all the previous posts and its amazing to find how many other people are out there going/been through the same thing as me and my family. My father is 86 and was diagnosed with Vascular Dementia about 2 years ago although in truth he'd been showing the symptoms for many years but only mildly and at a level that we didn't feel was dangerous for him. He has had numerous mini-strokes over the years which have obviously affected his level of dementia each time. About 4 weeks ago he became ill and after being admitted to hospital it was discovered that he had bleeding on the brain (subdural haematoma). He was transferred to a specialist hospital for an operation to drain the blood and is now back in the local hospital with some pretty horrendous scars on his head. The hospital now want to discharge him as they say he is medically fit from the operation. His level of dementia has increased rapidly over the last 4 weeks and can vary, some days he is not too bad and I can't have a decent conversation with him, other days he is totally confused and completely in his own little world and I just can't get through to him. He also has a tendancy to wander around on these days which poses a real threat if he falls and causes more injury to his brain which is still recovering from the op. When I visit him each day I don't know which Dad I'm going to see, the one who talks fairly reasonably about day to day matters but is still quite obviously suffering from dementia or the one who can hardly string a sentence together or babbles away talking nonsense. Its a real roller coaster ride each day.
Now the time has come for him to leave hospital and the staff are asking if its suitable for him to come and the simple answer unfortunately is no. My mother is 82 and has mobility problems and is just simply too old and ill herself to look after him. And modern society being as it is its not that straightforward for us 'kids' to look after him either. I live very near them but work shifts and very long hours and my two siblings live far away. I enquired about home care and was told that it would only consist of 2 visits a day, briefly to check everything was ok which wouldn't help my mother at all. So the only other option is 24 hour care in a home. As a family we always vowed that we would never put our parents in a home and that we would look after them (no offence to others who have done that but just thought that we'd be able to cope somehow) but now that the situation is here and we realise that this really is the only option. So now I find myself feeling incredibly guilty for making this decision and I know its going to really upsetting for us when he makes the move. For years I have done everything possible to make my parents life as easy as possible but I still feel so bad about this even though I know its the best thing for him and the only real solution. I guess you guys have felt the same?
I'm just starting off the process and am waiting for him to be assessed, Social Services to become involved, then the minefield of payments and allowances for his care which, as everything else in life, doesn't appear to be very simple and no doubt varies depending on where you live. So I'm sure I'll be on here lots more asking loads of questions and looking for advice from people who have been there before me. Thanks in advance.
The one thing that comforts me is that Dad has never suffered physical pain through this and I am grateful for that, but as a younger man he was such an intelligent person it seems so cruel that its his brain that's been affected in his latter years.
best wishes to all
arandas

 

[Grannie G]

Welcome to TP arandas

I wouldn`t be surprised if every single member of TP has vowed, in all sincerity, never to put any family member into a home.

No-one knows, until they experience it, the effects of full time caring, for those with challenging needs, be they physical, behavioural or a combination of both.

I`m really afraid there are some promises some of us are unable to keep. This brings the additional burden of guilt.

You are in good company arandas. We are all struggling with this dilemma.

I hope you find a solution to the care of your dad and keep in contact with TP. If you get any solace at all, one thig you will realize is you are not alone.

Take care xx

 

[Jo Co]

To Arandas

Hi Arandas,

I don't post many replies, because luckily Dad's dimentia has been manageable so far, though I have a suspicion that this may change soon, as he seems to be getting much more depressed and is not making very much sense when he is able to make a sentence.
Thinking that he may need more care soon, I have been looking into various options, which I must say wears me out more than the caring!
But what I really wanted to say was that if you and your family want to explore alternatives to your father going into a home, when you speak to Social Services ask them about direct payments. My father doesn't actually get these himself, but I do know they exist and it's a way that you can choose to spend the money as you wish on the care that you want for your father. The down side is that you have to make all the arrangements yourself, rather that having a care manager to do it, but sometimes even with a care manager you still end up sorting out a whole load of problems that you expect to have done for you. It might not be a solution, but maybe be worth asking anyway.
The other peice of advice I got is from Dad's solicitor. She told me that if Dad ever goes into hospital, NEVER agree to underwrite the cost of his care yourself when he is released. Apparently it is a way that the NHS/Social services can get out of paying what is rightfully due to someone needing care.
I hope you manage to work something out that gives the best care to you Dad, and Mum, and it is a decision you can live with. There are some other posts about the feelings other people have had when facing the same decision as you, if you get a moment try to read them, because you'll see you're not alone.
All the best,

Jo

 

[barbie]

vascular dementia

I have been reading for weeks the post by carers of loved ones with VAD orAD and I see myself and my family in all of them one way or another. My husband is 71 has VAD probaly AD too and 2 years ago had a frontal lobe stroke (change of personality). Some days he is occasionally lucid can be very nice more so when our daughter comes in and gets more attention. he attends a day centre 3 days a week,my sanity release and the other days I take him out for coffee and cake, and the day he does not go out Sunday he sulks like a 2 year old.Today I popped out to get the paper when I came back the front door was wide open and lights were on all over the house.He had his lunch and has since gone back into another room and sulked again. He needs continuous prompting and I help him in the shower, shave him and help him get dressed he cannot make drinks snacks as he has difficulty following instruction.We have the odd bathroom" accident" usually because he cannot get there quickly enough.He has a history of vascular problems narrowing of arteries in his legs, blocked carotid artery causing 2 strokesand a number of tia ( the start of VAD I think) a quadruple bypass and now this frontal lobe stroke he could not understand why he could not drive, play golf, and go for a walk by himself, we overcame that with great difficulty and stress and now we have yet another stage to cope with as he has deterioated considerably in the past few weeks.How much longer I can carry on I do not know as trying to deal with the dementia as well as the results of the stroke is beginning to wear me down Our daughter is wonderful very supportive but works fulltime our son works abroad and that old addage "you soon know who your are friends are" is so so true.
I am sure there are families in far worse situations than we are,but now I have at least found somewhere to discuss and realise that other families have been there and worn the Tshirt and got through it.

 

[Skye]

Hi Barbie

Welcome to TP.

I'm in a similar situation to you. My husband John is 73, and was diagnosed with AD seven years ago. Two years ago he diagnosis was changed to PPA, which is a variant of FLD, although as far as I know he hasn't had any strokes or TIAs.

Apart from that he is at about the same stage as your husband -- can't do anything about the house, I have to shower, dress and shave him, and he also has little 'accidents'.

And he too gets annoyed if I'm not 'entertaining' him. He has now started to demend to go to bed at 1.30, straight after lunch.

It's very hard work, and I'm constantly exhausted.

But I'm sure you'll find lots of support here, post as often as you like, and visit Tea Room if you feel like some relaxation.

Love,

 

[Grannie G]

I have been reading for weeks the post by carers of loved ones with VAD orAD and I see myself and my family in all of them one way or another. .

Welcome to TP Barbie.

We can all identify with each other, one way or another and that`s the common bond.

I hope you keep posting, now you`ve broken the ice, and will be helped by sharing. Whatever you say, and however your husband behaves, someone here will know what you mean.

Those who don`t will still understand.

Take care

 

[barbie]

To Sylvia and Hazel thanks for your welcome to TP I must admit I burst into tears when I read your posts, something I have not done in a long time.
My husband has been unwell since his carotid operation in 1994,friends noticed changes in him but I did not tell me,looking back now I can see where they protected him and me A complete stranger made a remark to me on holiday, and the physiotherapist we use also made a comment I started watching more carefully, Its funny that other people including complete strangers noticed before me, perhaps because its too close or maybe I did not want to see it.
I get very cross when people stare at us when we go out, some people are very kind they smile stand back say hello others look as if he has the plague,I have thought of putting a large red cross on his chest to make people realise he has an illness that cannot be seen.
Thanks for the support and now I have broken the ice I will post again
Barbie