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Hope in a time of dementia

FindingHope

New member
Jun 26, 2019
1
Dear Everyone

This is my first post on this forum, but I have been lurking for a while now. Since the beginning of this year to be more precise - ever since the word dementia entered my family´s vocabulary.

First of all I would like to thank everyone here for being candid and forthcoming, as it really gives this forum welcoming airs - and makes it more likely someone like me would write a thread such as this, in the first place :).

So. Why am I writing? I have really appreciated the stories of other people going through the early stages of diagnosis, and thought I would add my own to the mix - and hopefully give it a mildly different twist. Additionally I hope a thread such as this can act as a sort of therapy for myself, and an opportunity for others to maybe chip in with their thoughts or experiences with similar situations.

Anyway, I am in the beginning of my 30´s and I live in a northern European country. It all started around new years 2019 when a close family member wanted to talk about some changes they had been noticing through some time in my father. For the last couple of years I have been busy with work, including work abroad. I was very skeptical at first, as my father (who is in the beginning of his 70´s) has been working at a high-pace in academia for years. Slowly though, it dawned on me and my family that something definitely was off about him - it seemed like he had lost his sense of overview. It was the little things (the classic symptoms you see on dementia lists), lack of an overview of how much money was on his account. Was the bill paid? Did you respond to that email? You could tell he was still trying to keep it together, but it just wasnt working out how it had for many years. My father has always been a very important figure in my life, and as his overview had failed, it broke a part of me - and I had to leave work for some time with stress.

We were all sure it would be Alzheimers. He has lived an incredibly healthy life, running regularly / religiously, keeping his mind going with his work and eating healthily (fish, veg, all that good stuff) - vascular issues seemed very unlikely.

We started the process of getting him diagnosed - a process he luckily went along with. I wont say he necessarily went into it enthusiastically, but he went to the doctors appointments, scannings and all the other things without any complaints - you could tell he had a feeling something was wrong, but he was afraid of what the results might say. The diagnosis took what felt like forever - we ended up going some of the way with private sector doctors, as the wait would have been too long. Tests, more tests and scans. Finally we had a diagnosis. Vascular Dementia. Cerebral Small Vessel Disease. it came out of the blue. How can a man who has lived in such a way, have that kind of illness? I guess that´s how all illness is. Why him. Why this disease? To some degree the diagnosis has helped. We now know whats going on. Everyone was hoping for the magic bullet all the way through. When the doctor started talking about B12 deficiency, we all jumped at the opportunity of not being struck by the D-word. But it has happened, illness has entered our lives. It still seems unfair somehow, but that is life I guess.

A major advantage of a diagnosis is treatment. We know it is vascular in nature, and we found he had hypertension, which we have now gotten under control through medication. I think everyone looks for stability in illnesses, and keeping his major illnesses largest risk factor in check feels like you are at least doing something so it wont progress at all, or at least too fast. It can annoy me though, that if we had seen a stroke and acted, rehabilitation would have been high on the list of offers from the doctors, but because of this particular condition, it get offered at all? Maybe its a waste of resources, but for the family you need hope.

So where are we now, 11 months later? All in all things are good. My father is very much still with it, and hes taking his medicine no questions asked. He stopped driving, basically on his own (after a very minor traffic incident which scared him). His memory isnt stellar, but not terrible. His major symptoms are time confusion (especially when stressed), trouble with some executive function like getting started on projects, depth perception and loss of concentration. He used to walk incredibly but the condition has impacted his walking to a certain degree - but it doesnt seem to phase him. He can still cook (not at all as well as he used to), clean and take care of himself - which is incredibly important to me.

You can tell that he has the hardest time seeing the changes in himself, compared to my mom - this means that where he for instance used to be the techno-whizz in their household, he has a very hard time coping if my mother fixes the printer. This is one of the major areas in which they clash, as he settles in to his own new role in the family, and my mother does the same. Sadly we have also reached a point now where it is obvious he wont be able to keep up the bit of work he still did. Its not that he isnt basically capable, but there are some logistical and organisational duties he needs to perform that he just cant do anymore.

He has never had a large social network, but he loves his children and his grandchildren, and still picks up the grandchildren from school. He loves music, so I try to go to the concert hall with him. We both play instruments so we have started playing together. My other siblings visit him with their children when they can, and try to provide a decent segueway into true retirement.

Looking back, its hard to know if the disease has been progressing slowly or if it has come in steps. Maybe it isnt important, but it seems important. I remember a story from last year where, in hindsight, it seems like he could have had a TIA or stroke - but maybe thats just normal trying to "rationalise" the illness that we see now. Also its impossible to tell if his condition has worsened - sometimes we arent sure if we notice something "new", or if we just are more aware of what his symptoms are.

The major issue for me now is an underlying fear of his condition worsening. This is for me the hardest part of this particular disease. It could stabilise for years, it could go quickly downhill or something completely different could happen. We just dont know. We are controlling his risk factors, but in the end it isnt up to us. I guess it doesnt make sense to fear the unknowable, and to embrace all the good experiences we as a family are having DESPITE this disease. All things considered, our family has truly come together around my father through this illness, and we have realised that love truly does help.

Is life the same? No. Not at all. Its terrible to see your father lose some of the functions that define him, but I am the kind of person who needs an underlying feeling of hope, and through writing this entry I hope I have given others hope to better cope with their situation. I look forward to hear others experiences with progression and life with Vascular Dementia, especially Cerebral Micro Vessel Disease.

I will finish my entirely too long rant off with a paraphrased quote from my ever-optimistic father "I dont feel sick, so its important that we have this information (scans, tests, etc) so we can act on it. If it had been cancer, there wouldnt really be anything we could do."

Best regards
-Me
 

Lirene

Registered User
Sep 15, 2019
184
Thank you. I so understand where you are coming from. When my husband was diagnosed with Parkinson’s 13 years ago, although he’d had symptoms many years before, one if the first things I said was ‘it’s not cancer’. Years down the line, he now has dementia, paranoia, psychosis, hallucinations and many other problems. Yes he is still here but, in mind and body not. My heart goes out to you and your family. The Lord will take them, but in his own time xx
 

Kinder

New member
Nov 27, 2019
1
Thank you for posting this. I am in a similar situation where my Dad has just been diagnosed and we are struggling to come to terms with it. Similar to your Dad, he still has many skills, but in many ways is subtly changed. Just trying to work out how best to respond and to help both him and my Mum
 

Herecomestrouble

Registered User
Dec 11, 2018
24
Dear Everyone

This is my first post on this forum, but I have been lurking for a while now. Since the beginning of this year to be more precise - ever since the word dementia entered my family´s vocabulary.

First of all I would like to thank everyone here for being candid and forthcoming, as it really gives this forum welcoming airs - and makes it more likely someone like me would write a thread such as this, in the first place :).

So. Why am I writing? I have really appreciated the stories of other people going through the early stages of diagnosis, and thought I would add my own to the mix - and hopefully give it a mildly different twist. Additionally I hope a thread such as this can act as a sort of therapy for myself, and an opportunity for others to maybe chip in with their thoughts or experiences with similar situations.

Anyway, I am in the beginning of my 30´s and I live in a northern European country. It all started around new years 2019 when a close family member wanted to talk about some changes they had been noticing through some time in my father. For the last couple of years I have been busy with work, including work abroad. I was very skeptical at first, as my father (who is in the beginning of his 70´s) has been working at a high-pace in academia for years. Slowly though, it dawned on me and my family that something definitely was off about him - it seemed like he had lost his sense of overview. It was the little things (the classic symptoms you see on dementia lists), lack of an overview of how much money was on his account. Was the bill paid? Did you respond to that email? You could tell he was still trying to keep it together, but it just wasnt working out how it had for many years. My father has always been a very important figure in my life, and as his overview had failed, it broke a part of me - and I had to leave work for some time with stress.

We were all sure it would be Alzheimers. He has lived an incredibly healthy life, running regularly / religiously, keeping his mind going with his work and eating healthily (fish, veg, all that good stuff) - vascular issues seemed very unlikely.

We started the process of getting him diagnosed - a process he luckily went along with. I wont say he necessarily went into it enthusiastically, but he went to the doctors appointments, scannings and all the other things without any complaints - you could tell he had a feeling something was wrong, but he was afraid of what the results might say. The diagnosis took what felt like forever - we ended up going some of the way with private sector doctors, as the wait would have been too long. Tests, more tests and scans. Finally we had a diagnosis. Vascular Dementia. Cerebral Small Vessel Disease. it came out of the blue. How can a man who has lived in such a way, have that kind of illness? I guess that´s how all illness is. Why him. Why this disease? To some degree the diagnosis has helped. We now know whats going on. Everyone was hoping for the magic bullet all the way through. When the doctor started talking about B12 deficiency, we all jumped at the opportunity of not being struck by the D-word. But it has happened, illness has entered our lives. It still seems unfair somehow, but that is life I guess.

A major advantage of a diagnosis is treatment. We know it is vascular in nature, and we found he had hypertension, which we have now gotten under control through medication. I think everyone looks for stability in illnesses, and keeping his major illnesses largest risk factor in check feels like you are at least doing something so it wont progress at all, or at least too fast. It can annoy me though, that if we had seen a stroke and acted, rehabilitation would have been high on the list of offers from the doctors, but because of this particular condition, it get offered at all? Maybe its a waste of resources, but for the family you need hope.

So where are we now, 11 months later? All in all things are good. My father is very much still with it, and hes taking his medicine no questions asked. He stopped driving, basically on his own (after a very minor traffic incident which scared him). His memory isnt stellar, but not terrible. His major symptoms are time confusion (especially when stressed), trouble with some executive function like getting started on projects, depth perception and loss of concentration. He used to walk incredibly but the condition has impacted his walking to a certain degree - but it doesnt seem to phase him. He can still cook (not at all as well as he used to), clean and take care of himself - which is incredibly important to me.

You can tell that he has the hardest time seeing the changes in himself, compared to my mom - this means that where he for instance used to be the techno-whizz in their household, he has a very hard time coping if my mother fixes the printer. This is one of the major areas in which they clash, as he settles in to his own new role in the family, and my mother does the same. Sadly we have also reached a point now where it is obvious he wont be able to keep up the bit of work he still did. Its not that he isnt basically capable, but there are some logistical and organisational duties he needs to perform that he just cant do anymore.

He has never had a large social network, but he loves his children and his grandchildren, and still picks up the grandchildren from school. He loves music, so I try to go to the concert hall with him. We both play instruments so we have started playing together. My other siblings visit him with their children when they can, and try to provide a decent segueway into true retirement.

Looking back, its hard to know if the disease has been progressing slowly or if it has come in steps. Maybe it isnt important, but it seems important. I remember a story from last year where, in hindsight, it seems like he could have had a TIA or stroke - but maybe thats just normal trying to "rationalise" the illness that we see now. Also its impossible to tell if his condition has worsened - sometimes we arent sure if we notice something "new", or if we just are more aware of what his symptoms are.

The major issue for me now is an underlying fear of his condition worsening. This is for me the hardest part of this particular disease. It could stabilise for years, it could go quickly downhill or something completely different could happen. We just dont know. We are controlling his risk factors, but in the end it isnt up to us. I guess it doesnt make sense to fear the unknowable, and to embrace all the good experiences we as a family are having DESPITE this disease. All things considered, our family has truly come together around my father through this illness, and we have realised that love truly does help.

Is life the same? No. Not at all. Its terrible to see your father lose some of the functions that define him, but I am the kind of person who needs an underlying feeling of hope, and through writing this entry I hope I have given others hope to better cope with their situation. I look forward to hear others experiences with progression and life with Vascular Dementia, especially Cerebral Micro Vessel Disease.

I will finish my entirely too long rant off with a paraphrased quote from my ever-optimistic father "I dont feel sick, so its important that we have this information (scans, tests, etc) so we can act on it. If it had been cancer, there wouldnt really be anything we could do."

Best regards
-Me
What a beautifully written account..my heart goes out to you and I thank you for sharing such intimate details of what you and your family have been going through. It rings so many bells for me..my husband has Parkinson’s dementia, but many of the same characteristics, particularly in the area of executive functioning. He sort of knows that there is a problem, but that awareness doesn’t stay around long enough to make him alter what he does or is going to do so unless I watch him like a hawk, problems quickly arise. There is enough of “ him” left for me to feel either very guilty for getting so frustrated with him and the situation we are in ( have given up work for the time being to be his full time carer) or very sad when it brings home to me just how much we have lost. Only friends who knew what he was like before have any understanding of this and it is hard for them too ( and of course so scary to think that any of us might find ourselves on a similar path and we wonder how we would cope and who would take care of us....well I do anyway) .
There is a fine balance between expressing the grief that one feels, and putting on a brave face and being “ positive” . Both are needed but often the latter seems Tom be the only acceptable approach as far as others are concerned. I have worked in the field of child mental health for a while and know just how important it is to express those negative feelings in order for them not to get bottled up and come out in much less desirable and healthy ways, but it seems that I am better at saying that than doing it!
When things are bad I try to remember that love is what you do, and an act of Will, not necessarily what you feel..
Knowing that there is a remote community of Talking Point folk out there can help too...I hope you have found so.
With warm regards
HCT x