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Struggling with the not knowing

Sasperilla

Registered User
Aug 17, 2020
16
0
My Dad is 18 months post diagnosis of mixed dementia and I wondered how other people cope with not knowing what the future holds?

I have really taken on the standard advice to try to enjoy time with him and focus on the here and now, but that’s never been a strategy that works for me in terms of coping with any situation and actually make me feel more anxious.

He seems relatively well just now but I wake in the night wondering if I am kidding myself that visiting him once a week is enough (he lives about an hour away). Or I wonder if people say this, because it’s going to be really bad all of a sudden. A couple of really insensitive people who had experiences with dementia have hinted that he will most likely not recognise us ag some point and will be aggressive.

It reminds me of a close relative who had a terminal illness and the hospital staff told us not to read anything and to take things as they come. He died at the textbook average expectancy and with the symptoms expected. I felt like if they had been slightly more open about what was going to happen, we could have been better prepared. For example, I wouldn’t have booked a holiday when he was in the last weeks of his life. It sounds silly, but we didn’t actually realise that he was in the end stages until the GP told us on a home visit. I’m scared of this happening again.

How do you cope with the not knowing if it’s not a style of coping that’s helpful to you? Or were you able to piece together some information?

Sorry for the big ramble, but I do find it stressful wondering if my Dad might not be here next year and I’ve not fully grasped this yet.
 

Violet Jane

Registered User
Aug 23, 2021
779
0
Unfortunately, there are no certainties with dementia and that includes how long a PWD will live after diagnosis. That depends on various factors including the type of dementia, the age at diagnosis, the stage at which the PWD is diagnosed and his/her general state of health. Sometimes, the PWD develops another condition (eg cancer) which shortens his/her life before the dementia would have taken him/her. It’s impossible to answer your question about what to expect in your father’s case but, generally, people live for at least a couple of years after diagnosis.

It might seem insensitive but people are just trying to warn you that if your father lives with dementia for a long time it’s quite likely that he will cease to show any recognition of you as his child, although he might recognise you as someone that he knows / who cares about him. It’s not uncommon for a PWD to confuse family members so that, for example, s/he thinks that his/her daughter is his/her sister or late mother. Not all people with dementia are aggressive. My mother wasn’t (as far as I am aware) and she was quite a feisty lady.

It’s natural to be anxious about a diagnosis of dementia and what the future holds. It’s not easy living some distance away as small problems seem so much worse if you can’t reach the PWD quickly.

Does your father have carers going in? My mother had a care package put in place as soon as she was diagnosed and she picked up quite a lot (she was also prescribed Aricept at the same time) as she wasn’t coping and was anxious. I would have expected her to resist the idea of carers but she meekly agreed when the consultant at the memory clinic suggested it. She actually looked forward to the carers coming as she was bored and lonely.
 

Sasperilla

Registered User
Aug 17, 2020
16
0
Unfortunately, there are no certainties with dementia and that includes how long a PWD will live after diagnosis. That depends on various factors including the type of dementia, the age at diagnosis, the stage at which the PWD is diagnosed and his/her general state of health. Sometimes, the PWD develops another condition (eg cancer) which shortens his/her life before the dementia would have taken him/her. It’s impossible to answer your question about what to expect in your father’s case but, generally, people live for at least a couple of years after diagnosis.

It might seem insensitive but people are just trying to warn you that if your father lives with dementia for a long time it’s quite likely that he will cease to show any recognition of you as his child, although he might recognise you as someone that he knows / who cares about him. It’s not uncommon for a PWD to confuse family members so that, for example, s/he thinks that his/her daughter is his/her sister or late mother. Not all people with dementia are aggressive. My mother wasn’t (as far as I am aware) and she was quite a feisty lady.

It’s natural to be anxious about a diagnosis of dementia and what the future holds. It’s not easy living some distance away as small problems seem so much worse if you can’t reach the PWD quickly.

Does your father have carers going in? My mother had a care package put in place as soon as she was diagnosed and she picked up quite a lot (she was also prescribed Aricept at the same time) as she wasn’t coping and was anxious. I would have expected her to resist the idea of carers but she meekly agreed when the consultant at the memory clinic suggested it. She actually looked forward to the carers coming as she was bored and lonely.
Thanks for your reply @Violet Jane. It was quite comforting to me to think that I’m not totally off in what I’m thinking. He’s never been an aggressive person so I guess I’m just hoping for the best. He lives with my stepmum so he’s not lonely and he’s definitely not bored (although my stepmum might be). To be honest, if he forgot who I was I’m not sure that that would be too bad, as long as he didn’t think I was a stranger. Thanks for replying. It was comforting.
 

canary

Registered User
Feb 25, 2014
18,148
0
South coast
I joined this forum when I suddenly realised that my mum had dementia and read just about all the threads (even the long ones) to get an idea of what might happen. Mum didnt have all the problems that I read about - she never became bedbound, lost her speech, needed sectioning or several other things that I read about, but I found it comforting and then when she started displaying a particular symptom I found myself going - aha! Shes reached this stage now!

The Alzheimers Society also has a range of factsheets and publications which you might find helpful.
 

MartinWL

Registered User
Jun 12, 2020
1,962
0
65
London
My father is very similar to yours @Sasperilla and there really isn't much choice but to wait and see. A range of problems, symptoms, behaviours etc is possible but they may not happen. I can see that my father is getting slowly worse, more confused, but so far no really difficult behaviour. The uncertainty is hard to deal with I know. I suggest keeping an eye on things as best you can, be a detective and notice clues, and just be prepared to take things as they come.
 

Duggies-girl

Registered User
Sep 6, 2017
3,227
0
Hi @Sasperilla I am afraid that there is no helpful timeline with dementia, it's just a matter of dealing with the ups and downs as they come. My dad was diagnosed at 87 although I had known for 5 or 6 years that he had alzhiemers.

My dad was then diagnosed with cancer and given a very poor prognosis because of his age, frail state of health and the dementia. I of course did my very best to make sure that his remaining months would be happy months. Well he turned out to be a perfect model for palliative care for the elderly (his consultants words) and lasted another two years so there is no set time for a cancer prognosis. During this time he also spent 3 weeks in hospital with pneumonia where they called us in one night to say goodbye but dad wasn't going anywhere. He also survived a heart attack and a stroke and numerous falls. I was amazed at the fight dad had in him.

Each of these events made the dementia a bit worse but dad never changed, he stayed the same person right through until the end, he was kind hearted, very funny and no trouble at all. He was very pleasant company, he just forgot everything straight away. I did have to move in with him after the pneumonia episode as he could not live on his own anymore but he always recognised everyone right to the very end.

There is just no telling what will happen in the future but I think you are doing the right thing by trying to spend some nice time with your dad and he may just amble along nicely for a long time. Just take it as it comes.
 

Lawson58

Registered User
Aug 1, 2014
2,790
0
Victoria, Australia
Much of what you write about is grieving, having to come to terms with the potential loss you know that you will have to face one day.

That is something we all feel as our loved ones age, not just those with some form of dementia but who at some stage will develop some condition that will inevitably end their life.

The fears that you have are part of that, not wanting to lose the person in the physical sense but in their personality, the very essence of what makes them the person you know and love. That is the part that is worst of all.

Your concerns are real but may not apply to your dad and if you give yourself a little time to work through it all, you will find a way to cope. Many people survive dementia for many years and that may or may not be a blessing depending on the course their illness takes. I have often used the phrase about taking one bridge at a time and that is all you can do as you don’t know exactly what is ahead of you.
 

Frank24

Registered User
Feb 13, 2018
292
0
I joined this forum when I suddenly realised that my mum had dementia and read just about all the threads (even the long ones) to get an idea of what might happen. Mum didnt have all the problems that I read about - she never became bedbound, lost her speech, needed sectioning or several other things that I read about, but I found it comforting and then when she started displaying a particular symptom I found myself going - aha! Shes reached this stage now!

The Alzheimers Society also has a range of factsheets and publications which you might find helpful.
I did this also… and found it helpful. I like to plan for a crisis but you can’t always with this disease
 

PippaS

Registered User
Jan 3, 2022
29
0
I also struggle living with uncertainty. I prepared myself mentally to lose Dad last September when the GP said he could go “any moment” and issued the anticipatory medications. Four months later he is still here, frail and almost immobile but actually making some tiny tiny steps forward so I think he may have had long Covid. I have had to learn to accept that every day is different and that an improvement one day can be wiped out by progression of his dementia the next. I only live 15 minutes from his nursing home so I can see him every morning and I make sure that I pack the rest of the day with distractions and do things that I enjoy so I’m not just thinking about him all day and night. He still recognises me thank goodness and is not aggressive to me although he fiercely resists personal care from the staff and calls them all the names under the sun. Fortunately they know him well and that he will be a different person once he’s up and hoisted into his chair. This time has felt like both a blessing to have the extra months and the hardest thing I have ever had to do. But I have survived by expecting nothing and focusing on those moments where Dad’s personality shines through. Yesterday I was encouraging him to shave himself for a few moment and I said “come on Dad you can do it” and he replied “when you B&Q it” which is something he always used to say. I wish I could bottle those moments for when we lose them completely.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,087
0
High Peak
Hi @Sasperilla I'm another one who needs to know everything! When I thought my mother had dementia I started researching and read everything I could find online, which is what brought me to this forum, many moons ago.

Yes, everyone with dementia is different but there is a general progression that's quite well documented. I found this guide very useful:


It's depressing reading as you will see. Unfortunately dementia is progressive and things do get worse and worse :(
Without doubt, the most useful thing for me has been reading the posts here on Talking Point and hearing first hand what people with dementia can be like, the various problems and more importantly, how people have overcome them. It has also helped a lot with legal and procedural things - dealing with Social Services, appointments, rights of patients and carers, Power of Attorney concerns, etc.

You can also start a thread in the 'I care for someone with dementia' forum if you want to document your 'journey'.
 

Sasperilla

Registered User
Aug 17, 2020
16
0
I joined this forum when I suddenly realised that my mum had dementia and read just about all the threads (even the long ones) to get an idea of what might happen. Mum didnt have all the problems that I read about - she never became bedbound, lost her speech, needed sectioning or several other things that I read about, but I found it comforting and then when she started displaying a particular symptom I found myself going - aha! Shes reached this stage now!

The Alzheimers Society also has a range of factsheets and publications which you might find helpful.
Thank you Canary. I will definitely give this read.
 

Sasperilla

Registered User
Aug 17, 2020
16
0
My father is very similar to yours @Sasperilla and there really isn't much choice but to wait and see. A range of problems, symptoms, behaviours etc is possible but they may not happen. I can see that my father is getting slowly worse, more confused, but so far no really difficult behaviour. The uncertainty is hard to deal with I know. I suggest keeping an eye on things as best you can, be a detective and notice clues, and just be prepared to take things as they come.
Thanks Martin. He is definitely deteriorating. For a while, it seemed pretty stable but he’s taken another little dip. It’s so hard to watch them slowly decline isn’t it?
 

Sasperilla

Registered User
Aug 17, 2020
16
0
Hi @Sasperilla I am afraid that there is no helpful timeline with dementia, it's just a matter of dealing with the ups and downs as they come. My dad was diagnosed at 87 although I had known for 5 or 6 years that he had alzhiemers.

My dad was then diagnosed with cancer and given a very poor prognosis because of his age, frail state of health and the dementia. I of course did my very best to make sure that his remaining months would be happy months. Well he turned out to be a perfect model for palliative care for the elderly (his consultants words) and lasted another two years so there is no set time for a cancer prognosis. During this time he also spent 3 weeks in hospital with pneumonia where they called us in one night to say goodbye but dad wasn't going anywhere. He also survived a heart attack and a stroke and numerous falls. I was amazed at the fight dad had in him.

Each of these events made the dementia a bit worse but dad never changed, he stayed the same person right through until the end, he was kind hearted, very funny and no trouble at all. He was very pleasant company, he just forgot everything straight away. I did have to move in with him after the pneumonia episode as he could not live on his own anymore but he always recognised everyone right to the very end.

There is just no telling what will happen in the future but I think you are doing the right thing by trying to spend some nice time with your dad and he may just amble along nicely for a long time. Just take it as it comes.
Thanks @Duggies-girl. That’s a comfort to hear. He’s always been a gentle man so I’m hoping that it will continue.
 

Sasperilla

Registered User
Aug 17, 2020
16
0
Much of what you write about is grieving, having to come to terms with the potential loss you know that you will have to face one day.

That is something we all feel as our loved ones age, not just those with some form of dementia but who at some stage will develop some condition that will inevitably end their life.

The fears that you have are part of that, not wanting to lose the person in the physical sense but in their personality, the very essence of what makes them the person you know and love. That is the part that is worst of all.

Your concerns are real but may not apply to your dad and if you give yourself a little time to work through it all, you will find a way to cope. Many people survive dementia for many years and that may or may not be a blessing depending on the course their illness takes. I have often used the phrase about taking one bridge at a time and that is all you can do as you don’t know exactly what is ahead of you.
Thank you @Lawson58 I am most certainly grieving. He’s still here, but just not all of him. I want to have my Dad back and I know I can’t. And I know in some ways it has prompted me to appreciate him and to spend more time with him, but the heavy weight is there most days. This is hard.
 

Sasperilla

Registered User
Aug 17, 2020
16
0
I also struggle living with uncertainty. I prepared myself mentally to lose Dad last September when the GP said he could go “any moment” and issued the anticipatory medications. Four months later he is still here, frail and almost immobile but actually making some tiny tiny steps forward so I think he may have had long Covid. I have had to learn to accept that every day is different and that an improvement one day can be wiped out by progression of his dementia the next. I only live 15 minutes from his nursing home so I can see him every morning and I make sure that I pack the rest of the day with distractions and do things that I enjoy so I’m not just thinking about him all day and night. He still recognises me thank goodness and is not aggressive to me although he fiercely resists personal care from the staff and calls them all the names under the sun. Fortunately they know him well and that he will be a different person once he’s up and hoisted into his chair. This time has felt like both a blessing to have the extra months and the hardest thing I have ever had to do. But I have survived by expecting nothing and focusing on those moments where Dad’s personality shines through. Yesterday I was encouraging him to shave himself for a few moment and I said “come on Dad you can do it” and he replied “when you B&Q it” which is something he always used to say. I wish I could bottle those moments for when we lose them completely.
I know what you mean @PippaS My Dad still laughs a lot and when he laughs it’s so distinctive, I almost want to record it. I hope your Dad continues to get a little stronger.
 

Sasperilla

Registered User
Aug 17, 2020
16
0
Hi @Sasperilla I'm another one who needs to know everything! When I thought my mother had dementia I started researching and read everything I could find online, which is what brought me to this forum, many moons ago.

Yes, everyone with dementia is different but there is a general progression that's quite well documented. I found this guide very useful:


It's depressing reading as you will see. Unfortunately dementia is progressive and things do get worse and worse :(
Without doubt, the most useful thing for me has been reading the posts here on Talking Point and hearing first hand what people with dementia can be like, the various problems and more importantly, how people have overcome them. It has also helped a lot with legal and procedural things - dealing with Social Services, appointments, rights of patients and carers, Power of Attorney concerns, etc.

You can also start a thread in the 'I care for someone with dementia' forum if you want to document your 'journey'.
Thanks @Jaded'n'faded To be honest, I’ve avoided reading things for a year but I’m going to have to make sure I understand it better. Thanks for the advice on starting a thread.
 

PippaS

Registered User
Jan 3, 2022
29
0
I know what you mean @PippaS My Dad still laughs a lot and when he laughs it’s so distinctive, I almost want to record it. I hope your Dad continues to get a little stronger.
Thank you. He has put 6 kilos back on thanks to homemade cakes and puddings.