Young adult with parent with dementia

[rose1152]

Hello everyone,

Newby and first post!

I’ve never thought to get any support but recently realised that I’m just not coping and think this is a good starting point. I’ve also decided that I’m going to be painfully honest in the hope I can stop kidding myself and take on any advice.

I am 27 (I understand I’m not necessarily a young adult anymore as I am pushing 30 but I’ve been dealing with this for many years now), my mom is 67 and has been diagnosed with dementia for nearly 7 years.

At first we thought her problems were due to something like a tumour, when it turned out to be dementia I didn’t understand or accept what that meant.

My family is unusual but functional. My parents are still marrried but haven’t been a couple since I was in my early teens. They continued to live together for our sake (my brother and I) but we always knew they weren’t in a relationship anymore. My dad is now her carer and it amazes me everyday the sacrifice he makes to care for the mother of his children even though he isn’t romantically connected to her. He also has a new partner. My mum doesn’t know about her (and wouldn’t understand/remember anyway, plus not worth the hassle and potential worry) and I am thrilled that he is so happy with his new found partner and companion.

My brother is a similar age to me but lives mostly with his girlfriend. He also cares for her a lot of the time. I couldn’t tell you whether he is coping or not, but I know he isn’t happy.

Mum is deteriorating at a rapid pace. She can walk,talk, dress and wash herself. Everything else is a huge struggle. She cannot cook, use a phone, navigate a cohesive conversation or problem solve. We also believe she has always been on the autistic spectrum and so her personality and mental capacity is complex and sometimes baffling. She needs constant attention 24 hours a day. If left alone for just an hour will become extremely distressed and confused. She also needs constant guidance. If left to her own devices, she would wear the same dirty clothes everyday, make an omelette for every meal and sit in front of the tv all day (with it switched off because she doesn’t have the intuition or capacity to turn it on). She would stand in front of an open car door and need to be told to get inside. Every movement and action has to be pre empted. It is exhausting and when in public people often stare at us confused and wonder why her behaviour is so bizarre. I openly tell people she has dementia and they look at me even more confused because she does not look old enough to be 67 let alone old enough to have dementia (in their eyes, of course people suffer with dementia from a range of ages).

I feel extremely guilty for admitting this but out of all the mixed emotions I feel, anger is the strongest. I am angry that I am having to deal with this so soon, I am angry at her for not being the mum I expect her to be, I am angry that she has spent her working life looking after people with dementia as a social worker and her retired life as a dementia sufferer, I am angry that I had to buy my first house down the road from them to help with care and that I want to move away somewhere new and I am jealous of other peoples parents and their close relationships with them. I am also sad. Everyday.

I’m engaged. I told my fiancé that if it got to the point where she doesn’t understand what she is doing or where she is that I would rush the wedding and get it done quickly. That point has now far gone. She won’t understand the time of day let alone that she is at her daughters wedding. I honestly don’t know how I will cope and I don’t want my wedding day to be full of sadness because of her illness.

I’m not sure what I’m looking for really but any words of wisdom, advice, support or recommendations would be greatly appreciated at this time. It is dawning on me that this is not the end. It is going to get worse, a lot worse and the distress I feel now is only going to increase.

Sorry for the wordy post. Fair play if you have reached this far and thank you for taking the time to read it.

Take care everyone,

Love to all,
Your pal,

rose x

 

[Annie1629]

Hello everyone,

Newby and first post!

I’ve never thought to get any support but recently realised that I’m just not coping and think this is a good starting point. I’ve also decided that I’m going to be painfully honest in the hope I can stop kidding myself and take on any advice.

I am 27 (I understand I’m not necessarily a young adult anymore as I am pushing 30 but I’ve been dealing with this for many years now), my mom is 67 and has been diagnosed with dementia for nearly 7 years.

At first we thought her problems were due to something like a tumour, when it turned out to be dementia I didn’t understand or accept what that meant.

My family is unusual but functional. My parents are still marrried but haven’t been a couple since I was in my early teens. They continued to live together for our sake (my brother and I) but we always knew they weren’t in a relationship anymore. My dad is now her carer and it amazes me everyday the sacrifice he makes to care for the mother of his children even though he isn’t romantically connected to her. He also has a new partner. My mum doesn’t know about her (and wouldn’t understand/remember anyway, plus not worth the hassle and potential worry) and I am thrilled that he is so happy with his new found partner and companion.

My brother is a similar age to me but lives mostly with his girlfriend. He also cares for her a lot of the time. I couldn’t tell you whether he is coping or not, but I know he isn’t happy.

Mum is deteriorating at a rapid pace. She can walk,talk, dress and wash herself. Everything else is a huge struggle. She cannot cook, use a phone, navigate a cohesive conversation or problem solve. We also believe she has always been on the autistic spectrum and so her personality and mental capacity is complex and sometimes baffling. She needs constant attention 24 hours a day. If left alone for just an hour will become extremely distressed and confused. She also needs constant guidance. If left to her own devices, she would wear the same dirty clothes everyday, make an omelette for every meal and sit in front of the tv all day (with it switched off because she doesn’t have the intuition or capacity to turn it on). She would stand in front of an open car door and need to be told to get inside. Every movement and action has to be pre empted. It is exhausting and when in public people often stare at us confused and wonder why her behaviour is so bizarre. I openly tell people she has dementia and they look at me even more confused because she does not look old enough to be 67 let alone old enough to have dementia (in their eyes, of course people suffer with dementia from a range of ages).

I feel extremely guilty for admitting this but out of all the mixed emotions I feel, anger is the strongest. I am angry that I am having to deal with this so soon, I am angry at her for not being the mum I expect her to be, I am angry that she has spent her working life looking after people with dementia as a social worker and her retired life as a dementia sufferer, I am angry that I had to buy my first house down the road from them to help with care and that I want to move away somewhere new and I am jealous of other peoples parents and their close relationships with them. I am also sad. Everyday.

I’m engaged. I told my fiancé that if it got to the point where she doesn’t understand what she is doing or where she is that I would rush the wedding and get it done quickly. That point has now far gone. She won’t understand the time of day let alone that she is at her daughters wedding. I honestly don’t know how I will cope and I don’t want my wedding day to be full of sadness because of her illness.

I’m not sure what I’m looking for really but any words of wisdom, advice, support or recommendations would be greatly appreciated at this time. It is dawning on me that this is not the end. It is going to get worse, a lot worse and the distress I feel now is only going to increase.

Sorry for the wordy post. Fair play if you have reached this far and thank you for taking the time to read it.

Take care everyone,

Love to all,
Your pal,

rose x

Hello Rose,

I’m exhausted - just getting to bed after day looking after my husband - like your mum he’s only 68 and he has very severe dementia he was diagnosed when he was 60 but I wanted to reply as I’m struck by what you’ve said because your experience is very similar to that which my two sons are going through. When people think about looking after parents with dementia it’s kind of assumed it’s people in their 50s or 60s looking after parents in their 80s, but I know from the people in our young onset support group that there are a quite a few people in your shoes and there is not enough support for you. It’s very hard caring for your parents when you’re just starting on your own adult life. I know our sons have given up chances to do things in their own lives because of what is happening to their dad and it worries me a lot. And things are not going to get any easier. Have you had any involvement from your local social services ? You would be entitled to a carers assessment in your own right look at the impact this is having on your life. There also comes a point when you have to start looking outside the family for help and support. I know it’s very difficult but your mum needs to get used to having other people involved in her care. You are obviously a very special and loving daughter to both of your parents but you’ve got things in your life to be looking forward to.

Don’t feel guilty about your feelings of anger - it’s perfectly reasonable to feel angry in such sad circumstances. It might be worth finding out if there’s any counselling services locally - it might help you to talk through the situation.

Not much help I’m afraid, sending you love and positive thoughts,

Annie

 

[Duggies-girl]

Hi @rose1152

I am 61 and looking after 88 year old dad and I am angry that my last few years have been totally devoted to dad and my foreseeable future will be too but he is 88 and it will end sometime.

I really could not bear the thought of my 24 year old son having to give up his youth to look after me or his dad if either of us get dementia. It is not going to happen, I won't let it. I bought him into the world to live his own life and the only thing I want for him is that he is happy. He owes me nothing. I also know that my dad would say the same thing if he did not have dementia.

I don't blame you for feeling angry. It is not fair that a young person should be burdened with this. You are young, you have a fiancee, you have a life to live. To be honest you need to get out of the situation and lead your own life. Do not feel guilty. If your mum could think straight she would tell you the same. It is not your fault and it is not your responsablity. You may think it is but it is not. Your mum is 67 and may live another 20 years. You will be worn down before you have started your own life.

There may be many that disagree with me on this but this is no life for you.

I might sound a bit harsh but I really feel that your future should come first.

 

[karaokePete]

Hello @rose1152, whilst it's a sad circumstance that has brought you her I want to extend a welcome and let you know that this is a friendly, informative and supportive place.
Your emotions are understandable and such feelings are common when faced with dementia. My own wife was diagnosed in her early 60's so I understand much of what you say. You mention that your dad is caring for your mom and I hope that he gets all assistance required from Social Services.
If you think it would help your own situation to have a person to person chat our help line details are
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Do keep posting as I'm sure you will get support.

 

[rose1152]

Hello Rose,

I’m exhausted - just getting to bed after day looking after my husband - like your mum he’s only 68 and he has very severe dementia he was diagnosed when he was 60 but I wanted to reply as I’m struck by what you’ve said because your experience is very similar to that which my two sons are going through. When people think about looking after parents with dementia it’s kind of assumed it’s people in their 50s or 60s looking after parents in their 80s, but I know from the people in our young onset support group that there are a quite a few people in your shoes and there is not enough support for you. It’s very hard caring for your parents when you’re just starting on your own adult life. I know our sons have given up chances to do things in their own lives because of what is happening to their dad and it worries me a lot. And things are not going to get any easier. Have you had any involvement from your local social services ? You would be entitled to a carers assessment in your own right look at the impact this is having on your life. There also comes a point when you have to start looking outside the family for help and support. I know it’s very difficult but your mum needs to get used to having other people involved in her care. You are obviously a very special and loving daughter to both of your parents but you’ve got things in your life to be looking forward to.

Don’t feel guilty about your feelings of anger - it’s perfectly reasonable to feel angry in such sad circumstances. It might be worth finding out if there’s any counselling services locally - it might help you to talk through the situation.

Not much help I’m afraid, sending you love and positive thoughts,

Annie

Hello Annie,

Thank you so much for your kind words. It’s really interesting to hear that your family are in a similar position. We haven’t had social services involved as of yet, but I believe this is because we were trying to do as much as we can and when it gets too much then we will start thinking about outside help. I have tried to look for local support groups but most are during work hours and I work full time.

You do have a good point about my mum needing to get used to outside care. I tried to have a conversation with her about her dementia last night and she doesn’t realise that we care for her. She is acutely aware of her dementia but doesn’t understand that she wouldn’t cope without care. When I asked her what would make her happy she just said companionship. I suppose that says a lot.

Thank you again Annie, it’s wonderful to hear from you. What support do your boys get at the moment if any? And do you yourself have similar support?

Love,

Rose xx

 

[rose1152]

Hi @rose1152

I am 61 and looking after 88 year old dad and I am angry that my last few years have been totally devoted to dad and my foreseeable future will be too but he is 88 and it will end sometime.

I really could not bear the thought of my 24 year old son having to give up his youth to look after me or his dad if either of us get dementia. It is not going to happen, I won't let it. I bought him into the world to live his own life and the only thing I want for him is that he is happy. He owes me nothing. I also know that my dad would say the same thing if he did not have dementia.

I don't blame you for feeling angry. It is not fair that a young person should be burdened with this. You are young, you have a fiancee, you have a life to live. To be honest you need to get out of the situation and lead your own life. Do not feel guilty. If your mum could think straight she would tell you the same. It is not your fault and it is not your responsablity. You may think it is but it is not. Your mum is 67 and may live another 20 years. You will be worn down before you have started your own life.

There may be many that disagree with me on this but this is no life for you.

I might sound a bit harsh but I really feel that your future should come first.

Hi duggies-girl,

Thank you for your take on this. I do feel like I want to drop everything but in reality I don’t do half as much as my brother and Dad. They both live there and I live down the road. So my feelings of guilt are partly because I don’t think my feelings of anger are justified when I don’t care for her as much as the rest of them.

I don’t think I will ever be able to remove myself from the situation completely. Although my dad has made it very clear that he will not allow our situation to affect me and my brothers lives in terms of our future and I know he means that. He wants the best for us but he can’t look after her 24/7 and we want him to enjoy the rest of his life too. I suppose it’s finding a balance, communicating efficiently and knowing when we just need other care.

Just reading everyone’s replies has already started to help me think clearly about the situation.

I hope you and your family are coping well, what do you find helps you deal with it?

All the best,

Rose xx

 

[rose1152]

Hello @rose1152, whilst it's a sad circumstance that has brought you her I want to extend a welcome and let you know that this is a friendly, informative and supportive place.
Your emotions are understandable and such feelings are common when faced with dementia. My own wife was diagnosed in her early 60's so I understand much of what you say. You mention that your dad is caring for your mom and I hope that he gets all assistance required from Social Services.
If you think it would help your own situation to have a person to person chat our help

Do keep posting as I'm sure you will get support.

Hello karaoke pete

Thank you for your reply. I had thought about calling the helpline number just for the sake of actually speaking to someone. My dad is very switched on to what assistance he is entitled to but a lot of it has to do with waiting until we cannot cope any longer.

I think we all know that time is fast approaching if not already here.

Best wishes,

Rose xx

 

[Duggies-girl]

Hi duggies-girl,

Thank you for your take on this. I do feel like I want to drop everything but in reality I don’t do half as much as my brother and Dad. They both live there and I live down the road. So my feelings of guilt are partly because I don’t think my feelings of anger are justified when I don’t care for her as much as the rest of them.

I don’t think I will ever be able to remove myself from the situation completely. Although my dad has made it very clear that he will not allow our situation to affect me and my brothers lives in terms of our future and I know he means that. He wants the best for us but he can’t look after her 24/7 and we want him to enjoy the rest of his life too. I suppose it’s finding a balance, communicating efficiently and knowing when we just need other care.

Just reading everyone’s replies has already started to help me think clearly about the situation.

I hope you and your family are coping well, what do you find helps you deal with it?

All the best,

Rose xx

Hi Rose I am glad to hear that and no you could never completely remove yourself but I had visions of you ending up like me but possibly for the next 20 years and that would be awful.

I am lucky as dad has dementia but is still very lovely, kind and thoughtful but he is also very repetitive and forgets things almost instantly. He keeps himself and his home lovely. He is increasingly frail, not eating and a big worry. I am continually taking him to the doctors.

No one else in my family is the least bit interested so it I am his only carer and my husband helps me out. This is probably why I feel so strongly about young people taking on a caring role. It takes over your life if you allow it to and causes so much stress and heartache that it can be difficult to return to a normal life afterwards. I long for my freedom and everyday is another day gone.

 

[2jays]

With hindsight, I think the best move is to get extra support in, before it gets to crisis point.

It takes time to sort extra care, and better that it’s sorted before it’s actually fully needed

 

[father ted]

Hello rose1152,

Your post was so eloquently written and anyone in your shoes would feel angry.
You are a young woman with a wedding it he offing. At your age you should be carefree and enjoying all that life has to offer.
Firstly your post resonated with me as my parents divorced years ago but continued to live together as they lacked the finances to live separately. Although they had terrible rows when I was a child and in my teens the time they spent together mean't, I think that they were co dependent so continued to live together and when my Dad become house bound my Mum did lots of things for him she didn't have to do but I guess out of compassion. So your Dad must be a very good man to do what he does and I am glad that you support him in his new relationship because he deserves to have a life beyond caring and it is very sensitive of you to see it that way.

Your Mum has had a career caring for others and now this horrible disease has visited upon her. We like to think that being a good person pays in the long run but sadly that is not true. You say you are not sure what you are looking for by posting and I have simply replied because your post touched me but I have nothing to offer except to say you and your family sound wonderful and sadly sometimes bad things happen to good people. It is a sad situation but you have a good family and fiancé. Investigate if SS can offer some further help which will help all of you.

 

[smartieplum]

Hello everyone,

Newby and first post!

I’ve never thought to get any support but recently realised that I’m just not coping and think this is a good starting point. I’ve also decided that I’m going to be painfully honest in the hope I can stop kidding myself and take on any advice.

I am 27 (I understand I’m not necessarily a young adult anymore as I am pushing 30 but I’ve been dealing with this for many years now), my mom is 67 and has been diagnosed with dementia for nearly 7 years.

At first we thought her problems were due to something like a tumour, when it turned out to be dementia I didn’t understand or accept what that meant.

My family is unusual but functional. My parents are still marrried but haven’t been a couple since I was in my early teens. They continued to live together for our sake (my brother and I) but we always knew they weren’t in a relationship anymore. My dad is now her carer and it amazes me everyday the sacrifice he makes to care for the mother of his children even though he isn’t romantically connected to her. He also has a new partner. My mum doesn’t know about her (and wouldn’t understand/remember anyway, plus not worth the hassle and potential worry) and I am thrilled that he is so happy with his new found partner and companion.

My brother is a similar age to me but lives mostly with his girlfriend. He also cares for her a lot of the time. I couldn’t tell you whether he is coping or not, but I know he isn’t happy.

Mum is deteriorating at a rapid pace. She can walk,talk, dress and wash herself. Everything else is a huge struggle. She cannot cook, use a phone, navigate a cohesive conversation or problem solve. We also believe she has always been on the autistic spectrum and so her personality and mental capacity is complex and sometimes baffling. She needs constant attention 24 hours a day. If left alone for just an hour will become extremely distressed and confused. She also needs constant guidance. If left to her own devices, she would wear the same dirty clothes everyday, make an omelette for every meal and sit in front of the tv all day (with it switched off because she doesn’t have the intuition or capacity to turn it on). She would stand in front of an open car door and need to be told to get inside. Every movement and action has to be pre empted. It is exhausting and when in public people often stare at us confused and wonder why her behaviour is so bizarre. I openly tell people she has dementia and they look at me even more confused because she does not look old enough to be 67 let alone old enough to have dementia (in their eyes, of course people suffer with dementia from a range of ages).

I feel extremely guilty for admitting this but out of all the mixed emotions I feel, anger is the strongest. I am angry that I am having to deal with this so soon, I am angry at her for not being the mum I expect her to be, I am angry that she has spent her working life looking after people with dementia as a social worker and her retired life as a dementia sufferer, I am angry that I had to buy my first house down the road from them to help with care and that I want to move away somewhere new and I am jealous of other peoples parents and their close relationships with them. I am also sad. Everyday.

I’m engaged. I told my fiancé that if it got to the point where she doesn’t understand what she is doing or where she is that I would rush the wedding and get it done quickly. That point has now far gone. She won’t understand the time of day let alone that she is at her daughters wedding. I honestly don’t know how I will cope and I don’t want my wedding day to be full of sadness because of her illness.

I’m not sure what I’m looking for really but any words of wisdom, advice, support or recommendations would be greatly appreciated at this time. It is dawning on me that this is not the end. It is going to get worse, a lot worse and the distress I feel now is only going to increase.

Sorry for the wordy post. Fair play if you have reached this far and thank you for taking the time to read it.

Take care everyone,

Love to all,
Your pal,

rose x

I was 46 when mum was finally diagnosed. I don't know how I would have coped at your age. I am so full of admiration, respect, and pity for you. I say pity because a young woman like you should not have to cope with this horrible disease. Your mum is very lucky to have such a lovely daughter. We want this to be over but we also want the person our parent used to be back. More aggressive research needs to be done into this. What's the point of living well physically to come to this. Hugs x

 

[Tragicuglyducky]

Hi rose1152,
Welcome to talking point. I sometimes post on here just to get things off my chest. Nothing changes but I feel less angry and more sane.

I am in a similar position to you. I am 33 my brother is 30. My career is only just starting, my brother is in the process of retraining for a career change and I am also 5 months pregnant! However Dad is 86 and in addition to the dementia he also has all of the ailments that are unfortunately expected for a man his age - dental, arthuritus, mobility, cataracts and glaucoma etc etc.

As the others have said already, anybody who has to deal with this disease regardless of their circumstances has a right to be angry and frustrated. Dementia is one of the cruellest and despite so many sufferers people know very little about it and struggle to understand it. Anybody watch Victoria Derbyshire a few weeks ago? Someone made a very succinct statement about how dementia is the only disease where after diagnosis you are virtually discharged to cope in the community until you can’t. Harsh statement but that’s how I feel like we’ve been treated.

I, and a lot of others here will agree, that yes the social care element seems to only be set up if you persevere and persevere and persevere. I originally asked for help more than a year ago. Because things had settled I never chased. In October last year I asked again, this time using only email, there was some effort made to see what could be done, last week I received a package in the post with some printouts and a covering note that basically said “sort it out yourself”...

What I have learnt in these past 18 months is exactly what everyone here is telling you. Under no circumstances should you sacrifice your life for your mum. Especially with your mum being so young she could live for a long time (I’m dreading that my dad will live till he’s 100 and still cling on) how long do you put your life on hold until you can’t any longer? Do everything sooner rather than later. That applies to both support and the things you want for yourself. The dementia won’t get better, you can argue that every day or week or month that goes by is worse than those before.

If I had another life I would do everything I could to keep my dad living independently at home. To do that however, I need to have social care to ensure he dresses, feeds himself and takes his medication, I need a PA to take him out to the shops and day care. I need to set up equipment in his house to ensure his safety. I need to set up regular grocery shopping and a cleaner and repairs. I need to have the time and energy to field his million other needs that do not fall into the jurisdiction of social support like the calls because he can’t find his money/trousers/mop/slippers, the stress he experiences because if bin day or receiving post or what day it is. And then the appointments! He recently had his second cataract removed. The aftercare process has been hell.

My brother and I recently agreed that we do not have that in us so we are now looking at completely skipping the social care step and going straight to care home. We’ve worked out that having all of these responsibilities is making him and us very stressed to a point where we both neglect him by sometimes ignoring his calls for a day.

Consider counselling if you can access it. I’ve found it has helped me immensely in terms of guilt and acceptance. And work out what your boundaries are.

All the best!!!

 

[rose1152]

Hi Rose I am glad to hear that and no you could never completely remove yourself but I had visions of you ending up like me but possibly for the next 20 years and that would be awful.

I am lucky as dad has dementia but is still very lovely, kind and thoughtful but he is also very repetitive and forgets things almost instantly. He keeps himself and his home lovely. He is increasingly frail, not eating and a big worry. I am continually taking him to the doctors.

No one else in my family is the least bit interested so it I am his only carer and my husband helps me out. This is probably why I feel so strongly about young people taking on a caring role. It takes over your life if you allow it to and causes so much stress and heartache that it can be difficult to return to a normal life afterwards. I long for my freedom and everyday is another day gone.

I understand what you mean, maybe that’s the real reason for my anger...that it is clear that this will last most of my young to mid adult life. I never met my grandparents and always said I wanted children younger so that they would have a relationship with theirs. Again sadly not the case now. There are a million reasons to be angry.

Isn’t it complicated how their bodies can be so able but their minds so flawed. She also has good days and bad days, like everyone else. I think it’s fascinating how your dad still has his sense of pride with looking after himself and his house but that other everyday tasks are so difficult. How do you navigate your care for him? And how do you deal with the days when he deteriorates? Sometimes I can’t keep up with the progress of her disease!

 

[Duggies-girl]

I understand what you mean, maybe that’s the real reason for my anger...that it is clear that this will last most of my young to mid adult life. I never met my grandparents and always said I wanted children younger so that they would have a relationship with theirs. Again sadly not the case now. There are a million reasons to be angry.

Isn’t it complicated how their bodies can be so able but their minds so flawed. She also has good days and bad days, like everyone else. I think it’s fascinating how your dad still has his sense of pride with looking after himself and his house but that other everyday tasks are so difficult. How do you navigate your care for him? And how do you deal with the days when he deteriorates? Sometimes I can’t keep up with the progress of her disease!

Yes it is very strange. Spotless house and clean dad but he can hardly operate the TV remote and has no idea what is in his fridge. So I go twice a day to see him and take him shopping basically so he has some company and gets out as he is marooned otherwise. Many appointments at doctors and hospital and I do all of his paperwork etc.

It does not sound to bad and dad is very pleasant and sweet but it is every day and it gets a bit wearing.

I resent looking after dad all the time but he is my dad and I know he would do anything for me so I feel that I have to look after him. Deterioration is faster these last few months and he is looking so frail and small. I know the end is coming but I also know what that will mean. I will get the freedom that I want so much but it will cost me emotionally as I have grown very close to dad in the 6 years since mum died. I don't know what I will do without him. Run away and hide probably.

At least you have your dad and brother which is wonderful and your dad sounds wise in saying you have to lead normal lives. Family support is worth so much. My husband is supportive but he has been ill recently and can't do too much. My brother is not interested in his dad and does nothing for him at all. When dad is gone I will probably have nothing to do with him ever again. That's another family that dementia will have torn apart.

 

[rose1152]

Yes it is very strange. Spotless house and clean dad but he can hardly operate the TV remote and has no idea what is in his fridge. So I go twice a day to see him and take him shopping basically so he has some company and gets out as he is marooned otherwise. Many appointments at doctors and hospital and I do all of his paperwork etc.

It does not sound to bad and dad is very pleasant and sweet but it is every day and it gets a bit wearing.

I resent looking after dad all the time but he is my dad and I know he would do anything for me so I feel that I have to look after him. Deterioration is faster these last few months and he is looking so frail and small. I know the end is coming but I also know what that will mean. I will get the freedom that I want so much but it will cost me emotionally as I have grown very close to dad in the 6 years since mum died. I don't know what I will do without him. Run away and hide probably.

At least you have your dad and brother which is wonderful and your dad sounds wise in saying you have to lead normal lives. Family support is worth so much. My husband is supportive but he has been ill recently and can't do too much. My brother is not interested in his dad and does nothing for him at all. When dad is gone I will probably have nothing to do with him ever again. That's another family that dementia will have torn apart.

Oh I’m really sorry to hear that! It’s a shame it has to be that way isn’t it. Does your brother live near by?

Something interesting has started happening, my mum has started calling me everyday asking to go for a walk with me and my dog! She hasn’t called me for about 5 years. I didn’t think she was able to pick it up and use it properly! Just shows how difficult it is to pinpoint was is easy and difficult for someone struggling with dementia.

It will be a strange battle to deal with when you have to deal with the loss of your dad. I don’t even know where to start with that to be honest. Probably another thing I’ll try and forget until it comes bounding towards me in the future.

Do take care xxxx

 

[rose1152]

Hi rose1152,
Welcome to talking point. I sometimes post on here just to get things off my chest. Nothing changes but I feel less angry and more sane.

I am in a similar position to you. I am 33 my brother is 30. My career is only just starting, my brother is in the process of retraining for a career change and I am also 5 months pregnant! However Dad is 86 and in addition to the dementia he also has all of the ailments that are unfortunately expected for a man his age - dental, arthuritus, mobility, cataracts and glaucoma etc etc.

As the others have said already, anybody who has to deal with this disease regardless of their circumstances has a right to be angry and frustrated. Dementia is one of the cruellest and despite so many sufferers people know very little about it and struggle to understand it. Anybody watch Victoria Derbyshire a few weeks ago? Someone made a very succinct statement about how dementia is the only disease where after diagnosis you are virtually discharged to cope in the community until you can’t. Harsh statement but that’s how I feel like we’ve been treated.

I, and a lot of others here will agree, that yes the social care element seems to only be set up if you persevere and persevere and persevere. I originally asked for help more than a year ago. Because things had settled I never chased. In October last year I asked again, this time using only email, there was some effort made to see what could be done, last week I received a package in the post with some printouts and a covering note that basically said “sort it out yourself”...

What I have learnt in these past 18 months is exactly what everyone here is telling you. Under no circumstances should you sacrifice your life for your mum. Especially with your mum being so young she could live for a long time (I’m dreading that my dad will live till he’s 100 and still cling on) how long do you put your life on hold until you can’t any longer? Do everything sooner rather than later. That applies to both support and the things you want for yourself. The dementia won’t get better, you can argue that every day or week or month that goes by is worse than those before.

If I had another life I would do everything I could to keep my dad living independently at home. To do that however, I need to have social care to ensure he dresses, feeds himself and takes his medication, I need a PA to take him out to the shops and day care. I need to set up equipment in his house to ensure his safety. I need to set up regular grocery shopping and a cleaner and repairs. I need to have the time and energy to field his million other needs that do not fall into the jurisdiction of social support like the calls because he can’t find his money/trousers/mop/slippers, the stress he experiences because if bin day or receiving post or what day it is. And then the appointments! He recently had his second cataract removed. The aftercare process has been hell.

My brother and I recently agreed that we do not have that in us so we are now looking at completely skipping the social care step and going straight to care home. We’ve worked out that having all of these responsibilities is making him and us very stressed to a point where we both neglect him by sometimes ignoring his calls for a day.

Consider counselling if you can access it. I’ve found it has helped me immensely in terms of guilt and acceptance. And work out what your boundaries are.

All the best!!!

Hi tragic ugly ducky (that name makes me want to laugh and cry at the same time haha)

Thank you for your reply! A lot of what you have said has resounded with me. And you are so right at how difficult it is in terms of keeping them at home. It’s not just the generic everyday tasks like cooking and cleaning. It’s every menial little task between.

It sounds like you have made the right decision for everyone in your family. I hope it helps to make things easier. How did you come to a decision about which one and so you like where he is?

All the best xxxx

 

[rose1152]

I was 46 when mum was finally diagnosed. I don't know how I would have coped at your age. I am so full of admiration, respect, and pity for you. I say pity because a young woman like you should not have to cope with this horrible disease. Your mum is very lucky to have such a lovely daughter. We want this to be over but we also want the person our parent used to be back. More aggressive research needs to be done into this. What's the point of living well physically to come to this. Hugs x

Hi smartie plum,

Firstly, thank you for those kind words. They put a big smile on my face and I appreciate your reply.

That is still a young age for you to have to deal with this too. The more I look at these conversations and talk to people on here, the more I realise I have a lot to be thankful for. So many people talk about caring on their own...I’m so lucky to have my brother and Dad around too. I suppose when I started this post I was feeling sorry for myself and on a particularly bad day. I’ve soon realised that I am most certainly not alone and that your kind words are enough to get on with the day!

Sending happiness your way,

Rose xxx

 

[rose1152]

Hello rose1152,

Your post was so eloquently written and anyone in your shoes would feel angry.
You are a young woman with a wedding it he offing. At your age you should be carefree and enjoying all that life has to offer.
Firstly your post resonated with me as my parents divorced years ago but continued to live together as they lacked the finances to live separately. Although they had terrible rows when I was a child and in my teens the time they spent together mean't, I think that they were co dependent so continued to live together and when my Dad become house bound my Mum did lots of things for him she didn't have to do but I guess out of compassion. So your Dad must be a very good man to do what he does and I am glad that you support him in his new relationship because he deserves to have a life beyond caring and it is very sensitive of you to see it that way.

Your Mum has had a career caring for others and now this horrible disease has visited upon her. We like to think that being a good person pays in the long run but sadly that is not true. You say you are not sure what you are looking for by posting and I have simply replied because your post touched me but I have nothing to offer except to say you and your family sound wonderful and sadly sometimes bad things happen to good people. It is a sad situation but you have a good family and fiancé. Investigate if SS can offer some further help which will help all of you.

Hi father ted!

What a wonderful reply. Thank you.

It’s interesting to hear that your family was so similar to mine in terms of your parents co habiting etc. I am genuinely so happy for my dad now because I can see how happy she makes him. He only gets to see her on the odd weekend that he can get away and both my brother and I are free to care for mum.

Please excuse my naivety but what is SS? Is that support system?

Again thank you for the kind words, I hope you also find comfort and support with talking point as I have now found. One thing I have realised it that my situation is actually very fortunate in so many ways I had not realised. For that, I will always be grateful.

All the best,

Xxx

 

[rose1152]

With hindsight, I think the best move is to get extra support in, before it gets to crisis point.

It takes time to sort extra care, and better that it’s sorted before it’s actually fully needed

Noted!

I actually spoke to my dad about this recently. Your definitely right! We will start to make plans now before it’s too late!

 

[smartieplum]

Hi smartie plum,

Firstly, thank you for those kind words. They put a big smile on my face and I appreciate your reply.

That is still a young age for you to have to deal with this too. The more I look at these conversations and talk to people on here, the more I realise I have a lot to be thankful for. So many people talk about caring on their own...I’m so lucky to have my brother and Dad around too. I suppose when I started this post I was feeling sorry for myself and on a particularly bad day. I’ve soon realised that I am most certainly not alone and that your kind words are enough to get on with the day!

Sending happiness your way,

Rose xxx

You are never alone on here. And you are totally allowed a sad day. You wouldn't be human if you didn't. Something I've learned in my middle age (!) is to enjoy the good days.