Welcome to the vascular dementia forum

[Amy]

Hiya Barbie,
So pleased that you decided to post.

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

You will know when you can nolonger cope; all I would suggest is that you have a contingency plan for that moment. Know who you and your daughter can contact to get extra help and support; if it becomes time for a Nursing Home, have looked at some in advance. Try not to leave it until your own health is damaged too badly.
Sorry if this sounds very practical - I just know that my dad, brother and I got through that difficult time because I had phone numbers at the ready, and we already had a Nursing Home in mind. Though we had hoped not to have to use it - but life is not always what we hope for.
Love Helen

 

[barbie]

Vascular dementia and strokes

I posted for the first time some weeks ago, since we have had a bit of a crisis.My husband had another small stroke mid June became very very agitated pacing the floor lights on/off toilet flushing continuouslyand other problems using wrong place for the toilet .After an aborted attempt at respite(social worker was useless) he was taken to hospital where the Dr said "he has dementia and is confused why is he here" then he started kicking being abusive . 36 hours later he had another stroke and seizures, hospitals seem to forget we know our patients best.Since then he has deterioated considerably, he is now unable to walk sit up or move himself,doubly incontinent,little or no communication very agitated and angry with me and the children.There is little blood to the brain as 1 carotid artery is blocked and the other open 30% the scan shows multiple strokes add to this a heart problem and we have a time bomb.
One prayer has been answered I did not want to make the decision of a care home, that sadly has been made for me.
It is very hard when I see him in hospital as he asks to come home all the time, he gets very agitated swears pulls the bedclothes off and lashes out.His not the man I know. I have not been for 2 days as I find it very distressing, what upsets me more than anything is becoming detached and indifferent,I suppose that the only way to get through it .
Friends will be at the hospital tomorrow I hope he will be more pleasant
barbiel

 

[connie]

barbie, sending you a {{{{{{HUG}}}}}}}, what can I say.

It is hard to see them deteriate like this. At least you are not alone here.
All our problems are similar, very the same, but at least we can emphathise.

Hope tomorrow is a little better.

 

[Grannie G]

Dear Barbie,

I`m sorry things have taken a turn for the worse so quickly, but as you say, the dreadful decision to find residential accommodation for your husband has been taken out of your hands..

I can`t imagine how frightening a series of multiple strokes can be.
My husband is changing slowly, a slow decline. A rapid decline must be so much harder to cope with.

You can only do your best, and if you don`t think your best is good enough, you are probably pushing yourself too hard.

You are in an extremely difficult position. Look after yourself and take care.

Love xx

 

[blue sea]

Barbie
This is such a difficult experience. I am thinking of you. From my own experience of my father's rapid decline with VD I would offer this aadvice. Take things a day at a time - don't worry about what lies ahead, just 'get through' the day. Look after yourself, physically and emotionally. Don't feel guilty about times you can't face visiting. Seeing your loved one in such a state is enormously upsetting, even traumatic. Just do what you can cope with. I found I managed to handle frequent but quite short visits best, others find it helpful to have bigger gaps between visits. Just do what you feel you can manage best. On the practical side, do you have a community psychiatric nurse dealing with your husband's case? If not ask if you can be referred to the psychiartic service for a review of your husband's needs. The progression of VD, becuase of the nature of the effect of TIAs, can result in very quick and frequent changes to the person's mental state and behaviour. Frequent reviews of medication can be very helpful. I also had great emotional and practical support form the CPN - a lifeline really. To prtoect yourself and your ability to cope, it can be necessary to develop some emotional distance and detachment from what is happening. It is a really hard time for you and I send you lots of love and best wishes.
Blue sea

 

[strawberrywhip]

Barbie

So sorry to hear about your situation. Can I suggest that there are teams in the hospital who can just offer you some personal support. The chaplaincy teams are brilliant just for being there ..regardless of what your beliefs are : it sometimes helps to talk to someone who understands what it is like going through such a traumatic time ..and having a bit of time for yourself.... things will get sorted out but you need the support at the moment.
Nurses social services medics can be great but sometimes you just need someone to talk you through the crisis times . I just think it is a shame that people feel they can only talk to a chaplain if they have a particular faith ...they are very compassionate are very used to helping in times of crisis and can be a great support in a frightening alien environment.
Thoughts are with you

 

[caroleg]

My father died from Vascular dementia last September. He had been diagnosed with cerebral atrophy for a while and had difficulty walking as he was gradually losing feeling inhis legs. He also had prostrate trouble and having a catheter was a bone of contention between him and my mother as she was reluctant because she was worried about infections whereas my dad thought it would make everything easier. He always had good days and bad days but it was mostly a mobility problem. He had the catheter in March and had an infection in May. I don't know if he ever really got rid of the infection or whether it kept coming back but at the end of June he had a fall downstairs and my mum couldn't gt him up. She called the ambulance which was what she had been told to do and they wouldn't take him upstairs so he was admitted to hospital. The hospital wanted him to come home the next day but it was the physios who stopped him and said he had to be more mobile. He had another infection and was abusive (which was so unlike him)to the nurses and even hit one. He then got moved from the general ward to the elderly care ward and vasuclar dementia was diagnosed. My sisiter who lives in New Zealand came back for a meeting with the doctors who gave him abour 2 years to live. He was moved to a community hospital while we were being assessed by social services and trying to find a home that would be able to care for all his needs. Whilst there he had 2 periods when he was extremely agitated and seemed to be suffering, he was hitting out at staff and us and seemed to be in pain. The doctors kept giving him different medication but in the end he was transferred back to the main hospital. He wasn't really eating and painfully thin. The friday before he died early Tuesday morning the doctors were still giving him 6 months to live, but he stopped swallowing and would pull out drip tubes, even when they put them into his back. At least my mum, brother and I were able to be with him at the end.
It was so distressing seeing him detetiorate so quickly and I still find it hard to get past the end of his life to the better memories. He went so quickly at the end that I think he must have been suffereing from vascular dementia for a while which was masked by his other problems.
I didn't want to depress anyone but just felt a need to share the experience that we had been through.
Thanks

 

[Grannie G]

Dear Carol,

Welcome to TP.

I`m so sorry the memories of your father`s deterioration are so painful. I expect it will take a while before you will be able to bring happier memories of him to mind.

You won`t depress anyone here, we are here to share, and I hope you will feel able to post whenever you feel the need.

There will be a lot of support for you.

Love xx

 

[barbie]

vasular dementia

Thanks to all for the messages of support. My husband is still in hospital awaiting his assessments, again, before moving into a care home.We have been told he has multi infarct dementia as well as the vascular problems and the frontal lobe problems he has been v.agitated particularly when being changed and at night, he calls for me constantly and he has been given lorazepan to calm him down as well as another drug he is not eating much and sit watching the door waiting for me yesterday he was more pleasant probably because he was still sedated. the other day the staff called me behind the curtains whilst they changed him, no wonder he gets cross, pulled ,pushed, rolled I know they have a very difficult job, but surely it is easier to change a jacket with the patient sitting up?????
He has had 1 assessment for nursing needs,mistakes on it, his mental health assessment was also wrong Luclkily we have a wonderful lady "carer support officer" and she pointed out the errors.Yesterday the consultant asked how things were progressing with a home I explained , he was very understanding and sympathetic said "dont rush" I get home from hospital message from discharge co-ordinator chasing me.
It is a very big decision choosing where my husband wil spend the rest of his life very emotiona lOne day i am positive and steady the next a quivering wreck, I think I am putting off the inevitable I dont want him to go away but cannot look after him, i feel relieved from the constant caring but guilty that I even think or say that. I hope that soon I will feel "balanced" not too emotional not too guilty
barbie

 

[Grannie G]

Dear Barbie,

It is so difficult for you, I can only sympathize.

Really the decision has been made for you, as it sonds as if it would be impossible for you to care for your husband at home. It won`t however be any easier for you to accept the situation.

Take care xx

 

[Taz]

Hi all
Well, things have gone from bad to worse for my Dad. Whilst we were away on a short break he had 6 mini strokes. When we got back Mum told us and then mentioned that he'd stopped taking the aspirin he'd been given by the Consultant as he felt he was on too many tablets. Mum didn't want to argue so didn't mention it but is now kicking herself. On top of that, after several years of not being 'inimate' for various reasons, yesterday morning Dad began to 'make demands' and would not stop when Mum resisted, resulting in her crying and Dad eventually realised that he'd upset and hurt her. Mum told me this last night and it was hard to know what to say: I really didn't expect to be having this kind of conversation with my Mum and find it difficult to accept my lovely, gentle Dad behaving in this way towards her. I work with children and young people who have suffered abuse, including sexual assault and it was like talking to one of them so somewhere along the line I began to deal with it as I would if it were a professional conversation which helped a little. The reality is awful and I don't know what to do to help either of them: they are a very private and 'old-fashioned' couple and it must have taken a lot for Mum to talk about it.
I am supposed to be speaking to his Consultant tomorrow about how things have been and I don't know whether to mention this latest occurance or not. I expected certain things to happen, aggression etc, but not this.
Any ideas would be most welcome!
Thanks, if anyone can help, hope everyone is as ok as possible.
Take care.
xxx

 

[Grannie G]

Dear Sarah,

If your mother is normally a very private person she might have told you about your father because she wants help from you.

She knows you are seeing the consultant tomorrow, and I feel sure she would like you to discuss this with him, and everything else, to save her embarrassment.

If you work with children who have been sexually abused, she will know you are able to discuss these matters with strangers, whereas she might find it impossible.

Please don`t think too badly of your father. Vascular dementia is the cause of a lot of inappropriate behaviour and many actions are totally out of character. At least he stopped when your mother became upset.

It`s a shame he stopped taking the aspirin. It`s very difficult to make people take drugs when they have decided against them.

Please tell the consultant everything you know.

Let us know how you get on.

Love xx

 

[Taz]

Thank you so much for your reply, I saw them both last night after work and although Mum seemed tired and drawn she indicated that she was ok. Dad was his usual self and their interactions appeared to be 'normal' so fingers crossed....
I will be speaking to the Consultant this morning so I'll do as you advise and mention all of this to him: I'll post later to let you know what he says.
It is so much easier dealing with strangers in these situations, some of the situations I deal with at work are traumatic and heartbreaking but in all the years I've been privileged enough to do this work I've never been lost for something to say or do for the kids but I seized up when Mum spoke about this. My Dad is the man I judge all other men by, he's been the kind of Dad every child should have: I love him to bits and the whole situation is surreal. Through this forum though, I know we're not the only family dealing with this and that helps a lot.
Thanks again, I really do appreciate it!
xxx

 

[Grannie G]

. My Dad is the man I judge all other men by, he's been the kind of Dad every child should have: xxx

And that is why you know it`s the illness, Sarah. This horrible illness that makes people behave so out of character and hurt the people they love the most.

Please do post and update. I`ll be thinking of you with fingers crossed.

Love xx

 

[Skye]

Taz, just posting to wish you all the best.

It's noy and easy topic to discuss, particularly concerning your parents, but I'm sure with your experience, you'll manage. It's good that your mum felt able to confide in you.

Sylvia's right, it is the disease, not your dad. VAD gives rise to all sorts of inappropriate behaviour, so the consultant will not be surprised.

Let us know how it goes.

 

[Mameeskye]

Taz

Hope that you got on OK with your Dad's consultant today. You must be a great duaghter if your Mum was able to open up to you. This is the relationship I had with my Mum and Dad and why I miss her so. She will be so scared and would probably find it too embarassing to talk about but knows that you can do it.

Like you I resort to my professional face when dealing with some aspects of the disease. It eased the heartache over a lot of it as I dealt with POA's, house selling and all the financial aspects. As an accountant I found this to be quite easy to speak to and deal with the professionals involved at the end.

Your Dad is still somewhere the same Man you loved..it's just the illness breaking through. This is what I found difficult, watching my mum disappear and become bitter, angry, lacking empathy, social inhibitions and so aggressive. It's not your DAd. remind yourself of that. We are the people we are as we can rationally cover and know what is wrong. Dementia steals this knowledge from us.

((((hugs))))

Mameeskye

 

[Taz]

Thank you all for your kind words and for taking the time to post them.
The Consultant was great and not at all fazed about anything I said: he reassured me and gave me some strategies which I have been able to pass on to Mum. However he was worried about the mini strokes Dad had at the weekend and decided that he's going to do a home visit tomorrow morning. When I told Mum she became very anxious about how Dad would react to this change of plan: they were due to go to the hospital to see the Consultant next week. Dad got angry when Mum told him and this continued until I spoke to him when I got home from work. He told me off (I'm in my 40's so it's been years since that happened!) for talking to the Consultant about him and asked me to speak to him first before doing it again. Somehow we reached a point where he understood that if we weren't worried we wouldn't be bothering a busy Consultant and he said that at least it might mean that he wouldn't have to go to the hospital next week. The Consultant should be arriving before 10.00 tomorrow so I'll let you all know what happens, tomorrow night.
You have all been very kind and I very much appreciate that, especially since you all have your own situations and, no doubt, bittersweet memories to contend with on a daily basis too.
This is such a cruel disease............
with love and thanks
Sarah
xxx

 

[Grannie G]

Thank you Taz for the update. I`m glad it wasn`t as daunting as you might have expected.

When the consultant sees your father tomorrow, he`s likely to emphasize the importance of taking aspirin regularly to help prevent the strokes. Unfortunately, even though your father may agree, he is unlikely to remember this advice, and go against it again.

This happened with my husband and his unwillingness to take his diabetic medication regularly. The consultant emphasiszed how much this medication helped control his confusion, so it was important he took it every day. He agreed, but has forgotten this agreement.

If your father`s consultant wants to impress on him the importance of aspirin, could you ask for coping stategies if he forgets.

Hope it goes well tomorrow.

Love xx

 

[Taz]

Hi all
The Consultant was very thorough and gave Dad a bit of a physical 'MOT' too.
He has told him that he must keep taking the aspirins as well as the tablets for the Dementia that he prescribed last month and they talked about Dad having a chart to fill in so that the Consultant can check that he's doing what he's told.
He was worried about the depressive state of mind Dad is in so he is going to think about whether or not he should be on an anti-depressant too andd will discuss this with them when they go to the appointment next Thursday. He did warn them that these can make things worse for the Dementia though which is why he wants to check on which drug might be best.
Dad didn't get angry, thankfully, so we'll wait and see where we go from here. Mum says that nothing else has happened so fingers crossed.........
Thanks again to all of you for your support and kindness.
love
Sarah
xxx

 

[Skye]

Hi Sarah, glad the consultant was so thorough, and your dad was co-operative!

I'm not sure about the chart, though! Will your dad remember to fill it in? Or if he doesn't want to take the aspirin, will he fill it in and not take the tablets?

It seems to be taking a lot on trust from a dementia patient. I hope the consultant has managed to get through to your dad the importance of taking them.

Thanks for letting us know,