Diagnosed with vascular dementia 3 1/2 years ago

[minky93]

Hi! everyone
I had a TIA & had a cat scan which showed I did have a full stroke previously, I started having memory problems & the Stroke Consultant ordered an MRI scan which showed Vascular Dementia due to a stroke & several mini strokes which was my worst fear & unexpected I don’t remember much of the conversation apart from the dreaded word Dementia & being given a box of tissues by the doctor.
He sent me to the memory clinic for tests the result was mild cognitive impairment secondary to vascular dementia.
I have been relatively stable since & don’t appear to have gotten any worse. My question is can anybody give me an idea of when I will get worse, or will I remain pretty much the same for a long time, it’s been over three years since my diagnosis.
On another point I did tell them at the memory clinic that as soon as my faculties start to deteriorate I would end my life, which I will, as I cannot bear the thought of being so useless.

Kind Regards

Hilary

 

[karaokePete]

Hello Hilary, I’m glad you found TP again. Please keep posting.

In relation to the stages, these vary and overlap so much that I don’t think you’ll get an answer to that. It’s just great that you are obviously pretty stable - long may it continue.

In relation to your feelings, don’t underestimate the fact that apathy, anxiety and depression can creep in. I’m sure your GP could help with that.

Use the help line if you need it, here’s the number
0300 222 11 22

 

[minky93]

Thanks Pete for replying, I had forgotten I had already joined & when I tried to register as a new member it said my email was already in use, doh!
When I looked at the date it must have been when I was first diagnosed & joined Alzheimer’s Society. Thanks for the helpline number but I don’t think I will need it as I am not depressed & well over the initial shock.

Kind Regards

Hilary x

 

[mumsgone]

hi hilary,
the stages will vary from person to person. Best thing to do is live life to the full and maintain a healthy lifestyle. you are obviously doing really well at the mo and as karaokepete says long may it continue.keep communicating everyone is here for you xx

 

[Grannie G]

My question is can anybody give me an idea of when I will get worse, or will I remain pretty much the same for a long time, it’s been over three years since my diagnosis.

I doubt anyone will be able to tell you how or when your condition will deteriorate because so many factors affect progression, age, other medical conditions, type of dementia etc.

Considering your diagnosis was over three years ago and you were able to make your way back to Talking Point, which since your last post has changed considerable with a new site, and even though I`m no medic, it looks as if your progression is very slow and you`ll be good for a while yet.

I hope so.

 

[minky93]

Thanks everyone for replying, it means a lot to know I’m not on my own, although sometimes I feel as though I am. My husband who is very caring but sometimes I don’t feel he fully understands what is happening to me & can be abrupt when I have asked him the same question a few times or when I have forgotten to do something he asked me to do & gets irritated with me. I also don’t think he fully realises what will happen in the future & is burying his head in the sand so to speak.
We never talk about IT, we don’t plan for the future it feels as if nothing is wrong & we are merrily just carrying on our way.
This frustrates me.

Thanks for listening xx

 

[canary]

Im sorry you are feeling frustrated by not being able to plan for the future, but its actually quite difficult as no-one knows what route the dementia will take.

So long as you have got a POA and made your will, so they are there when needed, everything else can be sorted out as you go along. I expect your husband is finding it difficult to adjust too.

 

[minky93]

Hi Canary, we haven’t got a plan of action, it is as though I’ve not had the diagnosis in his eyes, I think he is in denial. I do all the banking paying the bills etc & wanted to show him how to do it online before it gets too much for me as at the moment I keep forgetting the passwords/passcodes & having to constantly reset them if I have forgotten to jot the new ones down but he won’t let me show him.
We have never discussed ANYTHING about my illness, nothing, it’s as though he thinks I’m okay & life will go on the same regardless when I know it will not, I would like to put a plan of action into place for the future but he won’t discuss it at all, that is why I’m frustrated, to be honest im a very pragmatic person & always have a plan B in place, which is one of the reasons for my asking my original question but I just don’t know what to do to make him realise I do have a very serious illness & everything isn’t okay & it isn’t going to go away because he doesn’t want to face it.
I’m at my wits end, I want to enjoy the faculties & life I have now without worrying what will happen to him when I’m gone. Is it too much to ask?
Sorry but I’m so upset at the moment x

 

[canary]

(((((((((((((hugs)))))))))))))
Thank you for explaining your problems. I understand better now.
Yes, he sounds like he is in denial and I dont know what you can do about that.

Can you write down all the things you would like to tell him, including instructions on how to do things, and put it all in a file for him to read at a later date? That way you know its all down on paper and dont need to worry about what happens when you forget.

Do you have any other family that you could discuss these things with?

 

[minky93]

Thanks Canary, I feel better getting it off my chest, this has been building up inside for a long time now, I had written all the details down just in case I forgot, I will show it to him but you made me think I could write him a letter explaining how I feel & see if that works I suppose it would make me feel better if nothing else.
I am so sorry that you are going through the mill with your oh I read your thread but it upset me, so I didn’t read right to the end which I will do. It is just a terrible disease that takes away your humanity.
Thank You for listening.
Lots of Love & ((((HUGS))))
Hilary x

 

[kindred]

(((((((((((((hugs)))))))))))))
Thank you for explaining your problems. I understand better now.
Yes, he sounds like he is in denial and I dont know what you can do about that.

Can you write down all the things you would like to tell him, including instructions on how to do things, and put it all in a file for him to read at a later date? That way you know its all down on paper and dont need to worry about what happens when you forget.

Do you have any other family that you could discuss these things with?

Canary, that is so good. I have done something roughly similar. I prepared a big exercise book with IF ANYTHING HAPPENS TO ME on the cover, so my son or brother would know exactly what is where, etc. Detail almost everything. Makes me feel I have the bases covered, if you see what I mean. Gxx

 

[karaokePete]

hello again @minky93, I notice that your OH's reaction to your dementia means that you don't have a plan of action concerning your affairs. I also note that you are still managing things.

I thought I would mention that your Will is for you to make and POA is for you to grant. Would it help to ease your mind if you went ahead and made your own arrangements so that you know you have 'got your affairs in order while you can' so to speak. My wife made her Will and granted POA as soon as she was diagnosed and whilst she now cannot recall or fully understand this she is always comforted when she suddenly worries about her financial affairs and I am able to reassure her that she did all that was necessary

 

[canary]

I am so sorry that you are going through the mill with your oh I read your thread but it upset me, so I didn’t read right to the end which I will do

If it upsets you please dont read it.
Not everything that you read about on here happens to everyone with dementia. My OH has a particular symptom which I am finding hard to accept, but it is not a common symptom

 

[try again]

Also get an advanced decision made. This will need to be given to your doctor and your husband. In fact , doing that and power of attorney may be a way of getting him to acknowledge things. It may even encourage him to do these things for himself.

 

[minky93]

Thank You! to everyone for all your replies & kind advice, it is much appreciated x

 

[SallyJo]

Hi! everyone
I had a TIA & had a cat scan which showed I did have a full stroke previously, I started having memory problems & the Stroke Consultant ordered an MRI scan which showed Vascular Dementia due to a stroke & several mini strokes which was my worst fear & unexpected I don’t remember much of the conversation apart from the dreaded word Dementia & being given a box of tissues by the doctor.
He sent me to the memory clinic for tests the result was mild cognitive impairment secondary to vascular dementia.
I have been relatively stable since & don’t appear to have gotten any worse. My question is can anybody give me an idea of when I will get worse, or will I remain pretty much the same for a long time, it’s been over three years since my diagnosis.
On another point I did tell them at the memory clinic that as soon as my faculties start to deteriorate I would end my life, which I will, as I cannot bear the thought of being so useless.

Kind Regards

Hilary

Dear Hilary/minky93
I was so pleased to find your post. I feel the same as you - that I do not want to put myself and my son and friends through years of deterioration. I have started going to a Death Cafe to discuss these issues and it's very interesting to hear other people's views and discuss death and the Right to Die, openly and calmly. It's not about being depressed, it's about taking control of our lives!
What does anyone else think about these issues?

 

[Norfolk Cherry]

I am very much in support of the right to die, and I admire your approach. I think we could all deal with this much more confidently, and reduce the suffering if we changed our policy on this key decision of our lives.