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Lost mum to vascular dementia after seven years of being her carer

Tattooed Mark

Registered User
Sep 19, 2020
24
Hi everyone
It has been three months now since I had to watch mum pass.She was diagnosed in 2013 with vascular dementia,after suffering mini TIA's.I was made redundant at the time, so fate moves in it's own way and I became her carer.I have been close to mum all my life,she always looked after me through life's journey so it was only right I looked after her in her time of need.At first,you just get on with things as a son,it's your mum,heh,okay she's a bit confused at first but as the years pass,those little things creep in that I'm sure you're all aware of but you just deal with it at the time.You just want mum to be safe,protected,she's eaten and drank enough.I never once considered residential care for her,all her life she never wanted to live on her own,she always had me and in last few years,my elder brother moved back.She had all she needed.She was still my mum,even though she relied on me to be the parent now.Thoughts of one day this will end,she will never get better,what will you do...you put them to the back of your mind.She needs you now so, you live in the day and don't plan ahead,how can you?A daily trip out to the shops,brother is at work,so,you race around to get back,conscious she may have fallen.This becomes your daily routine,the months turn to years.

Then those dreaded UTI's strike.Two years ago,she's at home and you get her through in a month.Seven months later,she's eating and drinking less again.Oh no! She struggles through until collapses in your arms through sheer weakness.A month in hospital to treat her ,visiting every day and she is released,now wearing a pad and so weak she can hardly stand.It takes weeks of feeding her up again until she resembles something of herself year ago.But it is short-lived.All the signs are there...the incontinence for years she had escaped,the constant prompting for her to drink from her beaker,to eat what she could.Then came the wake-up calls in the early hours,tapping on the kitchen window looking for me,going to bed myself but sleeping listening out for her. The care staff would visit daily to clean her and change pad but at times,as a son,that something years ago I swore I could not do became the norm,I couldn't just leave her sitting in a dirty pad until the next day.But we managed,me and mum,she loved me and knew I was only trying to make her comfortable.She had forgotten my name by now and sometimes would smile at me and say "you're my friend!"

Then this year, the dreaded virus struck and we kept her safe from Covid but come May, she was starting to eat and drink less and even though she just started anti-biotics for another UTI, I had to call the paramedics to get some fluids into her, she was starting to dehydrate and shake. It was a quick fix but the following day, I had to get her into hospital.She perked up in the ambulance,even though we were both masked up and I stayed with her until she was admitted onto the ward.Due to Covid restrictions,they wouldn't allow visitors for the first week.My heart broke..how would she cope,she is so used to seeing me every day.A week later,I got to see her for an hour.She was so weak and had thrush in her mouth.She said she hadn't seen me for a few days.Two days later she was starting to pick up again but the doctors took me into a side room and said all her blood markers and indications were that the dementia had its final hold on her.I fought back the tears and went back to the ward.I couldn't look mum in the eye.They wouldn't let her home until a week later,when a final care team were in place. Covid restrictions came back and I couldn't see her until five days later. She looked so frail.She smiled and said "old age." She knew her time was coming.The ambulance brought her home the following day. Tests were Covid free,thank God! A damn UTI had reduced her to this.End of life meds were prescribed.They said it could be days or weeks.Even at this time,I couldn't accept what was happening.I just had to look after mum as always and get her through the day.She was hardly drinking,no hospital drip now to top her up.She ate some food that I spoon fed her.My hopes rose a little,mum was eating! In my mind,I had the day Saturday..it would be Saturday...five days at home then...

Late Saturday night,after days of sitting at her bedside and sleeping on the floor beside her.she gave me a final look.She hadn't spoken for days and I knew she needed help.She wanted to sleep on her side and bed sores were gnawing at her back.The nurse came out and gave her the smallest amount of Morphine and put her on her side.I bedded down on floor later,blindly content she had no pain and was sleeping. I slept soundly and awoke.I got up and looked across to her. I imagined I saw her closed eyes flicker,she was aware I was up.I said I'd get my breakfast and make her a drink, even though she could't. I started brushing my teeth and just broke down,I knew she had passed.The morning was sitting talking to her through tears,notifying doctor,funeral home etc.It was mid-afternoon they carried her out in a green body bag.It all seemed unreal.Forty years of living in this house and she leaves in that.

It has been three months.I have never cried so much in my life,hardly in my life,not even when dad passed sixteen years ago and my sister a year after that.Nothing prepared me for losing mum,even as a carer,I knew what was to come in the end.So many emotions wrapped up in complete numbness and depression. There was a spell of remembering mum as she was, before she got dementia,the mum of my childhood and later years.We had shared a lifetime of memories together.Even my own life's memories became like yesterday.Time seems to suspend,no past or future,it just becomes the now and your own grief of getting through another day without them.People ask "how are you?" I look vague,it throws me,I can't answer,I give a weak smile and shake my head a little.Do I lie and say I'm okay as we all do? I feel like mum is telling me to look after myself now,be happy as she always wanted of me,just be happy....I am crying now as I type this. Yesterday I didn't cry, I felt guilty I hadn't, am I not grieving enough? But the tears come less,I may get a day or two of coping through the day, bills to find,food to get,cat to feed etc without grief hitting me but I know, it's there,lurking,waiting, and I part of me welcomes it.It's mum,memories,it feels real..day to day life doesn't. Like so many of us,grieving or not,we just plod on as the years tick by.I spent two months after funeral bottling it up,heh,I'm a man,I'm supposed to cope but I had broken down too many times and I asked for help.I rang the community nurse who used to visit mum,just hearing her voice brought it all back and I broke down to her.I am now getting help through my GP,a counselor through the local carer's team, and my coach at local jobcentre gave me a list of help online.This forum was one of them. We have our story to tell of a loved one.As a carer,nothing prepares you for what is to come or how you should feel or cope after their passing.When you are looking after them,you keep mentally strong because they rely on you to be strong for them,too.I feel like that strength cracked finally when she passed.Mum would have been 92 in three weeks.I am now mid-fifties,single and lost.At a crossroads in life's journey with a lifetime behind me of good memories of mum.
 

kindred

Registered User
Apr 8, 2018
2,511
Hi everyone
It has been three months now since I had to watch mum pass.She was diagnosed in 2013 with vascular dementia,after suffering mini TIA's.I was made redundant at the time, so fate moves in it's own way and I became her carer.I have been close to mum all my life,she always looked after me through life's journey so it was only right I looked after her in her time of need.At first,you just get on with things as a son,it's your mum,heh,okay she's a bit confused at first but as the years pass,those little things creep in that I'm sure you're all aware of but you just deal with it at the time.You just want mum to be safe,protected,she's eaten and drank enough.I never once considered residential care for her,all her life she never wanted to live on her own,she always had me and in last few years,my elder brother moved back.She had all she needed.She was still my mum,even though she relied on me to be the parent now.Thoughts of one day this will end,she will never get better,what will you do...you put them to the back of your mind.She needs you now so, you live in the day and don't plan ahead,how can you?A daily trip out to the shops,brother is at work,so,you race around to get back,conscious she may have fallen.This becomes your daily routine,the months turn to years.

Then those dreaded UTI's strike.Two years ago,she's at home and you get her through in a month.Seven months later,she's eating and drinking less again.Oh no! She struggles through until collapses in your arms through sheer weakness.A month in hospital to treat her ,visiting every day and she is released,now wearing a pad and so weak she can hardly stand.It takes weeks of feeding her up again until she resembles something of herself year ago.But it is short-lived.All the signs are there...the incontinence for years she had escaped,the constant prompting for her to drink from her beaker,to eat what she could.Then came the wake-up calls in the early hours,tapping on the kitchen window looking for me,going to bed myself but sleeping listening out for her. The care staff would visit daily to clean her and change pad but at times,as a son,that something years ago I swore I could not do became the norm,I couldn't just leave her sitting in a dirty pad until the next day.But we managed,me and mum,she loved me and knew I was only trying to make her comfortable.She had forgotten my name by now and sometimes would smile at me and say "you're my friend!"

Then this year, the dreaded virus struck and we kept her safe from Covid but come May, she was starting to eat and drink less and even though she just started anti-biotics for another UTI, I had to call the paramedics to get some fluids into her, she was starting to dehydrate and shake. It was a quick fix but the following day, I had to get her into hospital.She perked up in the ambulance,even though we were both masked up and I stayed with her until she was admitted onto the ward.Due to Covid restrictions,they wouldn't allow visitors for the first week.My heart broke..how would she cope,she is so used to seeing me every day.A week later,I got to see her for an hour.She was so weak and had thrush in her mouth.She said she hadn't seen me for a few days.Two days later she was starting to pick up again but the doctors took me into a side room and said all her blood markers and indications were that the dementia had its final hold on her.I fought back the tears and went back to the ward.I couldn't look mum in the eye.They wouldn't let her home until a week later,when a final care team were in place. Covid restrictions came back and I couldn't see her until five days later. She looked so frail.She smiled and said "old age." She knew her time was coming.The ambulance brought her home the following day. Tests were Covid free,thank God! A damn UTI had reduced her to this.End of life meds were prescribed.They said it could be days or weeks.Even at this time,I couldn't accept what was happening.I just had to look after mum as always and get her through the day.She was hardly drinking,no hospital drip now to top her up.She ate some food that I spoon fed her.My hopes rose a little,mum was eating! In my mind,I had the day Saturday..it would be Saturday...five days at home then...

Late Saturday night,after days of sitting at her bedside and sleeping on the floor beside her.she gave me a final look.She hadn't spoken for days and I knew she needed help.She wanted to sleep on her side and bed sores were gnawing at her back.The nurse came out and gave her the smallest amount of Morphine and put her on her side.I bedded down on floor later,blindly content she had no pain and was sleeping. I slept soundly and awoke.I got up and looked across to her. I imagined I saw her closed eyes flicker,she was aware I was up.I said I'd get my breakfast and make her a drink, even though she could't. I started brushing my teeth and just broke down,I knew she had passed.The morning was sitting talking to her through tears,notifying doctor,funeral home etc.It was mid-afternoon they carried her out in a green body bag.It all seemed unreal.Forty years of living in this house and she leaves in that.

It has been three months.I have never cried so much in my life,hardly in my life,not even when dad passed sixteen years ago and my sister a year after that.Nothing prepared me for losing mum,even as a carer,I knew what was to come in the end.So many emotions wrapped up in complete numbness and depression. There was a spell of remembering mum as she was, before she got dementia,the mum of my childhood and later years.We had shared a lifetime of memories together.Even my own life's memories became like yesterday.Time seems to suspend,no past or future,it just becomes the now and your own grief of getting through another day without them.People ask "how are you?" I look vague,it throws me,I can't answer,I give a weak smile and shake my head a little.Do I lie and say I'm okay as we all do? I feel like mum is telling me to look after myself now,be happy as she always wanted of me,just be happy....I am crying now as I type this. Yesterday I didn't cry, I felt guilty I hadn't, am I not grieving enough? But the tears come less,I may get a day or two of coping through the day, bills to find,food to get,cat to feed etc without grief hitting me but I know, it's there,lurking,waiting, and I part of me welcomes it.It's mum,memories,it feels real..day to day life doesn't. Like so many of us,grieving or not,we just plod on as the years tick by.I spent two months after funeral bottling it up,heh,I'm a man,I'm supposed to cope but I had broken down too many times and I asked for help.I rang the community nurse who used to visit mum,just hearing her voice brought it all back and I broke down to her.I am now getting help through my GP,a counselor through the local carer's team, and my coach at local jobcentre gave me a list of help online.This forum was one of them. We have our story to tell of a loved one.As a carer,nothing prepares you for what is to come or how you should feel or cope after their passing.When you are looking after them,you keep mentally strong because they rely on you to be strong for them,too.I feel like that strength cracked finally when she passed.Mum would have been 92 in three weeks.I am now mid-fifties,single and lost.At a crossroads in life's journey with a lifetime behind me of good memories of mum.
My dear this beautiful, intensely honest and respectful account will stay with me fir ever. Thank you for joining us. And for telling us this. I lost my beloved husband to dementia not long ago and carry the grief with me as part of honouring him, as you so well describe, we go through the motions of living. Those memories are diamonds and your mum was so so fortunate to have your love and care and intense loyalty. Thank you. Warmest, Kindred.
 

Duggies-girl

Registered User
Sep 6, 2017
2,101
Hi @Tattooed Mark I have read your post and it bought me to tears. I recognise the journey even though I did leave home many years ago I came back to look after dad for nearly 3 years and we had all the emotional ups and downs of progression followed by illness and then more illness. Dad was skeletal so I fed him up and he was better then he was skeletal again so I fed him up again and he was better but the inevitable comes in the end. We were spared the covid thing which I am glad of because I can not imagine the horror of dad being taken away and me not being allowed to visit. Dad died in February at home with me which I am thankful for.

Your love for your mum shines through and she would have seen that so be glad that you got her through this awful disease and her final days, she would have been proud.

As for grieving, it is very early days and you probably don't know where you are, I certainly don't but I know that your mum, just like my dad, would want you to just take your time and accept any help that you can. I found it helped to take my time going through dads things bit by bit and talking about dad or just thinking about his life (he had a good one) and what he achieved. I am making plans to visit some of the places he did (he was a seaman) when we are allowed to travel and that gives me something to look forward to one day.

I am glad that you have found this forum as it is really useful even after the caring is over and you will find some lovely people on here.

Be kind to yourself, you deserve it.
 

Just me

Registered User
Nov 17, 2013
391
I too was in tears reading your post @Tattooed Mark and my heart goes out to you.
I have been looking after my Mum since 2013 and she was diagnosed with vascular problems dementia in 2015 and it’s been a tough old time for her.
I recently decided that I could no longer give her the care she needed and have set the wheels in motion for a care home placement.
Your post humbles me and makes me doubt my decision. I wish I had your strength.
Take care and be kind to yourself xx
 

Tattooed Mark

Registered User
Sep 19, 2020
24
Hi, I am humbled by the replies,thank you,I didn't think anyone would read,I have been wrapped up in my own bubble with grief and looking after mum,you become insulated in your own little world of caring.Those that don't become a carer don't really understand or empathise with what we go through.As carers too,we look after them with complete love but it's tough for our loved ones,locked in their own mind,frustrated,trying to do all the things they used to and at times I didn't think of that,it was good old mum,she's still here,smiling and still able to eat and drink.As the years progress, those little things start to show that we are warned about.I would say "trust in yourself,listen to your inner voice,you probably know you are doing now what is best for mum." Everyone's circumstances are never alike.My cousin had the same issues with her mum,she had a husband and was working,it's difficult under any circumstances!Thankfully,mum's dementia,she could respond,get herself around ground level and eat what I had prepared for a fair few years since 2013.Last year things started to decline but we battled on,with me becoming her walking aid.She detested her stick! Maybe give the care placement a try,for you and mum,see how you both go.Do what's best for mum.It's tough for all carers to keep strong,it's such an emotional journey.We know the outcome,there is no cure,you live each year as "maybe this is the last one?"Strength has many branches,whatever decision we take for them and ourselves,it is always heartbreaking.I kept mentally strong but those last few days,after all the years of helping her,I had to just sit with her and couldn't do anything but comfort and wait.We are all strong because the decisions we have to make for them requires it. Let me know how it goes.Thank you:)
 

Tattooed Mark

Registered User
Sep 19, 2020
24
My dear this beautiful, intensely honest and respectful account will stay with me fir ever. Thank you for joining us. And for telling us this. I lost my beloved husband to dementia not long ago and carry the grief with me as part of honouring him, as you so well describe, we go through the motions of living. Those memories are diamonds and your mum was so so fortunate to have your love and care and intense loyalty. Thank you. Warmest, Kindred.
Thank you so much for your kind words.I tried to write my story as openly and respectful as I cared for mum.Keep those memories alive each day.I found a little prayer mum had kept in her belongings,it must have meant a lot to her in her earlier days.I have not been one for prayers but each morning,I say it quietly and add I love you mum and miss you.I picture her saying thank you and 'I'm still here you know!' as she would say. Your kind words brought to mind her last stay in hospital,one of the support team told me one of her doctor's had commented how lucky she was to have a devoted son by her side.I was quite humbled.It was just mum,always loved her,always there for her every day,what son's are supposed to do but we know this isn't always so in the world.I understand about keeping that grief as honouring them,I am the same,somehow it helps us to make some sense of the reality now without them,physically here,it's so hard not to be able to see and hear them but talking aloud does help,as we talk to others to celebrate their life,we can quietly talk still to them,just like we would saying a prayer. Warmest regards
 

Tattooed Mark

Registered User
Sep 19, 2020
24
Hi @Tattooed Mark I have read your post and it bought me to tears. I recognise the journey even though I did leave home many years ago I came back to look after dad for nearly 3 years and we had all the emotional ups and downs of progression followed by illness and then more illness. Dad was skeletal so I fed him up and he was better then he was skeletal again so I fed him up again and he was better but the inevitable comes in the end. We were spared the covid thing which I am glad of because I can not imagine the horror of dad being taken away and me not being allowed to visit. Dad died in February at home with me which I am thankful for.

Your love for your mum shines through and she would have seen that so be glad that you got her through this awful disease and her final days, she would have been proud.

As for grieving, it is very early days and you probably don't know where you are, I certainly don't but I know that your mum, just like my dad, would want you to just take your time and accept any help that you can. I found it helped to take my time going through dads things bit by bit and talking about dad or just thinking about his life (he had a good one) and what he achieved. I am making plans to visit some of the places he did (he was a seaman) when we are allowed to travel and that gives me something to look forward to one day.

I am glad that you have found this forum as it is really useful even after the caring is over and you will find some lovely people on here.

Be kind to yourself, you deserve it.
Thank you so much! Yes,it is heartbreaking,the time feeding and getting vital drinks down them,months of devotion then a spell of decline and you have to start all over again,then in the final days,you feel helpless,you can't feed or get any fluid down them,For mum it was just a piece of gauze soaked in fruit juice the last two days and still I tried to nurse her back from the inevitable.It is such an emotional journey as a carer because we are told the outcome,however long we care for them,we will lose them. I think for me,the final days watching her slip away then the shock of looking at her that sunny Sunday morning in June,her eyes almost closed,her hand raised to her mouth and I was willing her to open them again.All the times over the years when you go to them in morning,pull back the curtains and pray they are still breathing,a silent phew to yourself when they are.This time,it was like all those years had merged into one moment and it all stopped. I understand that idea,too,I visited mum's birthplace that she lived there until she married.Does this make sense but the day after she passed,I had this strange urge to visit the hospital she had been at because looking back a week earlier,that's where she was,looking at me,me telling her she was coming home the next day.It passed of course,I knew she wasn't there but I just couldn't see straight.Even though,when I go to town,I look up to the road that leads to the hospital and think back with heavy heart...if only?What if we got her home a week earlier,could I have got some food and drink into her like last year out f hospital,I had done it then?Those thoughts hung around me for weeks,I just couldn't accept the hospitals decision but now I understand,having read cases on here,mum passing was so very the same.In the end,the dementia gets its final on their mind.You are offering them food and drink and they just smile back.The grief is something,as carers,we are not prepared for, we spend most of our thinking time caring for someone else,thinking and feeling for them.Now,I'm having to deal with the loss like so many others and the tears come when you least expect them,even when in days you think you are that little bit stronger and why was I crying the other day? Indeed,this forum has been a light shining some rays through the darkness of these past months.Thank you!
 

Whisperer

Registered User
Mar 27, 2017
218
Dear @Tattooed Mark

i have read this thread and been reduced to tears. Yes partly sadness but also at admiration for what you took on and achieved. I am caring for my mum, very likely Vascular Dementia, but she refuses to return to the Memory Clinic to get an official diagnosis. “if I am going doally I do not want to know”. So we go forward, me unable to speak about the elephant in the room to mum, which I find very hard at times. Diagnosed with MCI in 2015 my caring role really started two years later. Your mentioning the moment of maximum uncertainty when opening the bedroom curtains is already with me. My mum sometimes confuses me with my dad (her husband) or her dad (my grandad) or her mum, some mornings. But the one I dread is when there is no movement.

I confess at some moments I ask have I got what it takes to nurse mum through the coming hopefully years, tackle her slow mental and physical decline. I gave up full time employment gradually reducing my hours, getting a job in a supermarket two nights a week, best I could do around caring. That went with Covid19, just to risky what I could bring home. My siblings work in public facing roles, so do not want to risk direct contact with us. We have Skype but in reality since March our world has shrunk to just the two of us. Steadily our relationship slips further away from us as Dementia grows as the elephant in the room.

I wish to say a heartfelt thank you for allowing me and others an insight of your experiences caring for your mum. When I doubt myself in future I will remember this thread, that another man got through to the end. As you wisely say no two personal experiences are the same, I may not make it, but it remains my hope to allow mum to die in her own home, always her expressed wish. I am fortunate financially, have no wife or children, etc, so I can care for my mum without distraction. That said events may beat me. What the future holds after my caring role ends I no longer think about. How do you plan a future at the end of a piece of rope of unknown length or strength? In truth it becomes an irrelevancy in the caring role.

I hope your future gives you happy experiences, that you look back on your caring role with less emotional pain than you are experiencing at present. I have had a few moments like yours with the consultant‘s comments. At one level possibly our mums are lucky, if getting Dementia in the first place is ever lucky! I think we both understand what some others perhaps do not. Like me I suggest you suspect fate plays a bigger role in our lives than most of us appreciate. Often when we believe we are exercising our capacity to make independent decisions, in reality we are just following a path already laid out for us. You made great sacrifices caring for your mum, in the eyes of others. In your own heart you did what you knew was needed, took on the path which fate had led you to, creating circumstances where you could do so. At one level we had a choice, at another we both know that choice was an illusion. That may not make sense to some people who read these words, but I think you will understand them.

I close in hoping your path into the future is a long and happy one. Thank you again for being so open and honest. You have definitely helped me and I no doubt many others who have read your words. Your mum would want you now to enjoy the future, where ever it takes you. Part of her will always be in your memories, thoughts, indeed how you react to the world. She helped to shape the man you are today.
 
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Tattooed Mark

Registered User
Sep 19, 2020
24
Dear @Tattooed Mark

i have read this thread and been reduced to tears. Yes partly sadness but also at admiration for what you took on and achieved. I am caring for my mum, very likely Vascular Dementia, but she refuses to return to the Memory Clinic to get an official diagnosis. “if I am going doally I do not want to know”. So we go forward, me unable to speak about the elephant in the room to mum, which I find very hard at times. Diagnosed with MCI in 2015 my caring role really started two years later. Your mentioning the moment of maximum uncertainty when opening the bedroom curtains is already with me. My mum sometimes confuses me with my dad (her husband) or her dad (my grandad) or her mum, some mornings. But the one I dread is when there is no movement.

I confess at some moments I ask have I got what it takes to nurse mum through the coming hopefully years, tackle her slow mental and physical decline. I gave up full time employment gradually reducing my hours, getting a job in a supermarket two nights a week, best I could do around caring. That went with Covid19, just to risky what I could bring home. My siblings work in public facing roles, so do not want to risk direct contact with us. We have Skype but in reality since March our world has shrunk to just the two of us. Steadily our relationship slips further away from us as Dementia grows as the elephant in the room.

I wish to say a heartfelt thank you for allowing me and others an insight of your experiences caring for your mum. When I doubt myself in future I will remember this thread, that another man got through to the end. As you wisely say no two personal experiences are the same, I may not make it, but it remains my hope to allow mum to die in her own home, always her expressed wish. I am fortunate financially, have no wife or children, etc, so I can care for my mum without distraction. That said events may beat me. What the future holds after my caring role ends I no longer think about. How do you plan a future at the end of a piece of rope of unknown length or strength? In truth it becomes an irrelevancy in the caring role.

I hope your future gives you happy experiences, that you look back on your caring role with less emotional pain than you are experiencing at present. I have had a few moments like yours with the consultant‘s comments. At one level possibly our mums are lucky, if getting Dementia in the first place is ever lucky! I think we both understand what some others perhaps do not. Like me I suggest you suspect fate plays a bigger role in our lives than most of us appreciate. Often when we believe we are exercising our capacity to make independent decisions, in reality we are just following a path already laid out for us. You made great sacrifices caring for your mum, in the eyes of others. In your own heart you did what you knew was needed, took on the path which fate had led you to, creating circumstances where you could do so. At one level we had a choice, at another we both know that choice was an illusion. That may not make sense to some people who read these words, but I think you will understand them.

I close in hoping your path into the future is a long and happy one. Thank you again for being so open and honest. You have definitely helped me and I no doubt many others who have read your words. Your mum would want you now to enjoy the future, where ever it takes you. Part of her will always be in your memories, thoughts, indeed how you react to the world. She helped to shape the man you are today.
Thank you for your kind thoughts.It sounds similar to myself,came out of work,no wife or kids and becoming mum's full-time carer.Mum's dementia affected her memory mostly,thankfully the first few years she knew who I was and could respond to some conversation.The final months though,she was asking for her mum,that my brother was her lost brother and I was her good friend.I knew in those cherished years that I would never have this time with mum ever again and she would pass eventually so those days and evenings,just sitting together watching tv, with a cuppa,the cat on her knee,breaks my heart now as the house is so empty without her.Life goes on but it is not the life I had with her or knew.The complete love we show as a carer will get you through the difficult times,the times you're having a bad moment yourself and feel it's hard to deal with.We forget as carers,we are just human and have to give thought to our own needs and wants,not constantly having to think for mum,too.I was told when I took on caring for mum,not many men would take on that role but I didn't understand them,I loved my mum and she needed me to look after her,so,it seemed normal.Yes,she always told me in life 'just be happy now' that's all she wanted so probably to see my so sad would make her sad,too.The grieving takes no prisoners though! We have to allow ourselves however long to work through it in our own way,however it may seem strange to others.In the end,the memories of them are what keep us going and the love we always feel for them.
 

Whisperer

Registered User
Mar 27, 2017
218
Thank you for your kind thoughts.It sounds similar to myself,came out of work,no wife or kids and becoming mum's full-time carer.Mum's dementia affected her memory mostly,thankfully the first few years she knew who I was and could respond to some conversation.The final months though,she was asking for her mum,that my brother was her lost brother and I was her good friend.I knew in those cherished years that I would never have this time with mum ever again and she would pass eventually so those days and evenings,just sitting together watching tv, with a cuppa,the cat on her knee,breaks my heart now as the house is so empty without her.Life goes on but it is not the life I had with her or knew.The complete love we show as a carer will get you through the difficult times,the times you're having a bad moment yourself and feel it's hard to deal with.We forget as carers,we are just human and have to give thought to our own needs and wants,not constantly having to think for mum,too.I was told when I took on caring for mum,not many men would take on that role but I didn't understand them,I loved my mum and she needed me to look after her,so,it seemed normal.Yes,she always told me in life 'just be happy now' that's all she wanted so probably to see my so sad would make her sad,too.The grieving takes no prisoners though! We have to allow ourselves however long to work through it in our own way,however it may seem strange to others.In the end,the memories of them are what keep us going and the love we always feel for them.
Thank you for your reply. Please take care in the future. Not sure if you have heard of them or if they operate in your area, but perhaps if possible consider the CRUISE organisation. They offer support and advice regarding bereavement, either as counselling or just meeting others in a social group. Just thought it might help. Best wishes for the future.
 

Weasell

Registered User
Oct 21, 2019
681
Just a short post to thank you for sharing you story.
Reading about the love and care you and your mum had was very moving.
I think the fact that you have sought out help to deal with you grief, and acted on it is inspiring!
i wonder if in the coming months you may be in a position to help others with advice as to what worked and what didn’t?
 

Hazara8

Registered User
Apr 6, 2015
537
Hi everyone
It has been three months now since I had to watch mum pass.She was diagnosed in 2013 with vascular dementia,after suffering mini TIA's.I was made redundant at the time, so fate moves in it's own way and I became her carer.I have been close to mum all my life,she always looked after me through life's journey so it was only right I looked after her in her time of need.At first,you just get on with things as a son,it's your mum,heh,okay she's a bit confused at first but as the years pass,those little things creep in that I'm sure you're all aware of but you just deal with it at the time.You just want mum to be safe,protected,she's eaten and drank enough.I never once considered residential care for her,all her life she never wanted to live on her own,she always had me and in last few years,my elder brother moved back.She had all she needed.She was still my mum,even though she relied on me to be the parent now.Thoughts of one day this will end,she will never get better,what will you do...you put them to the back of your mind.She needs you now so, you live in the day and don't plan ahead,how can you?A daily trip out to the shops,brother is at work,so,you race around to get back,conscious she may have fallen.This becomes your daily routine,the months turn to years.

Then those dreaded UTI's strike.Two years ago,she's at home and you get her through in a month.Seven months later,she's eating and drinking less again.Oh no! She struggles through until collapses in your arms through sheer weakness.A month in hospital to treat her ,visiting every day and she is released,now wearing a pad and so weak she can hardly stand.It takes weeks of feeding her up again until she resembles something of herself year ago.But it is short-lived.All the signs are there...the incontinence for years she had escaped,the constant prompting for her to drink from her beaker,to eat what she could.Then came the wake-up calls in the early hours,tapping on the kitchen window looking for me,going to bed myself but sleeping listening out for her. The care staff would visit daily to clean her and change pad but at times,as a son,that something years ago I swore I could not do became the norm,I couldn't just leave her sitting in a dirty pad until the next day.But we managed,me and mum,she loved me and knew I was only trying to make her comfortable.She had forgotten my name by now and sometimes would smile at me and say "you're my friend!"

Then this year, the dreaded virus struck and we kept her safe from Covid but come May, she was starting to eat and drink less and even though she just started anti-biotics for another UTI, I had to call the paramedics to get some fluids into her, she was starting to dehydrate and shake. It was a quick fix but the following day, I had to get her into hospital.She perked up in the ambulance,even though we were both masked up and I stayed with her until she was admitted onto the ward.Due to Covid restrictions,they wouldn't allow visitors for the first week.My heart broke..how would she cope,she is so used to seeing me every day.A week later,I got to see her for an hour.She was so weak and had thrush in her mouth.She said she hadn't seen me for a few days.Two days later she was starting to pick up again but the doctors took me into a side room and said all her blood markers and indications were that the dementia had its final hold on her.I fought back the tears and went back to the ward.I couldn't look mum in the eye.They wouldn't let her home until a week later,when a final care team were in place. Covid restrictions came back and I couldn't see her until five days later. She looked so frail.She smiled and said "old age." She knew her time was coming.The ambulance brought her home the following day. Tests were Covid free,thank God! A damn UTI had reduced her to this.End of life meds were prescribed.They said it could be days or weeks.Even at this time,I couldn't accept what was happening.I just had to look after mum as always and get her through the day.She was hardly drinking,no hospital drip now to top her up.She ate some food that I spoon fed her.My hopes rose a little,mum was eating! In my mind,I had the day Saturday..it would be Saturday...five days at home then...

Late Saturday night,after days of sitting at her bedside and sleeping on the floor beside her.she gave me a final look.She hadn't spoken for days and I knew she needed help.She wanted to sleep on her side and bed sores were gnawing at her back.The nurse came out and gave her the smallest amount of Morphine and put her on her side.I bedded down on floor later,blindly content she had no pain and was sleeping. I slept soundly and awoke.I got up and looked across to her. I imagined I saw her closed eyes flicker,she was aware I was up.I said I'd get my breakfast and make her a drink, even though she could't. I started brushing my teeth and just broke down,I knew she had passed.The morning was sitting talking to her through tears,notifying doctor,funeral home etc.It was mid-afternoon they carried her out in a green body bag.It all seemed unreal.Forty years of living in this house and she leaves in that.

It has been three months.I have never cried so much in my life,hardly in my life,not even when dad passed sixteen years ago and my sister a year after that.Nothing prepared me for losing mum,even as a carer,I knew what was to come in the end.So many emotions wrapped up in complete numbness and depression. There was a spell of remembering mum as she was, before she got dementia,the mum of my childhood and later years.We had shared a lifetime of memories together.Even my own life's memories became like yesterday.Time seems to suspend,no past or future,it just becomes the now and your own grief of getting through another day without them.People ask "how are you?" I look vague,it throws me,I can't answer,I give a weak smile and shake my head a little.Do I lie and say I'm okay as we all do? I feel like mum is telling me to look after myself now,be happy as she always wanted of me,just be happy....I am crying now as I type this. Yesterday I didn't cry, I felt guilty I hadn't, am I not grieving enough? But the tears come less,I may get a day or two of coping through the day, bills to find,food to get,cat to feed etc without grief hitting me but I know, it's there,lurking,waiting, and I part of me welcomes it.It's mum,memories,it feels real..day to day life doesn't. Like so many of us,grieving or not,we just plod on as the years tick by.I spent two months after funeral bottling it up,heh,I'm a man,I'm supposed to cope but I had broken down too many times and I asked for help.I rang the community nurse who used to visit mum,just hearing her voice brought it all back and I broke down to her.I am now getting help through my GP,a counselor through the local carer's team, and my coach at local jobcentre gave me a list of help online.This forum was one of them. We have our story to tell of a loved one.As a carer,nothing prepares you for what is to come or how you should feel or cope after their passing.When you are looking after them,you keep mentally strong because they rely on you to be strong for them,too.I feel like that strength cracked finally when she passed.Mum would have been 92 in three weeks.I am now mid-fifties,single and lost.At a crossroads in life's journey with a lifetime behind me of good memories of mum
The price one pays for this "bond" - mother and son - is compounded by the " secondary bond" which comes about due to the dementia. You, the son, now play the role of ' mother ' almost literally - the physical tending, feeding, washing and so on. The psychological relationship becomes one of single-minded protection and care. The outside world runs parallel to your insular life, but you rarely step foot outside that insularity. People are kind and complimentary and even siblings have notions which are innocently light years away from the actuality of events taking place each and every moment within the confines of the home in which the two of you live. And so it goes on ....
I slept in the small side room in hospital for one month, watching vigil over my dying mother. She died four weeks off her 100th birthday. They say time is a great healer? The reality is such, that all that has gone before was the "reality" as it took place. The tears, the tumbling out of bed, the traumatic moment in the supermarket, the wonderfully uplifting day out by the canal... all of it was actual. Now it is history.
Your mind retains that " history" in imagery and in remembrance and you resurrect pain or joy or whatever you like, in memory. Memory is not fact. All that took place during that very challenging dementia journey was as real as your own right hand is before your eyes now. When we grieve we restore what has gone. The immense challenge - and it is immense - is in perceiving the " history" or the memories for what they are. Just that. I can smile openly and with the same delight on seeing my mother's picture on her bedroom wall, as if she were actually there. But l know the picture is paper and will fade away one day. All those precious moments with her from my childhood through her Alzheimer's journey, to her last peaceful gentle breaths as she left this turbulent world, are sacred and cannot ever be changed nor destroyed.
In that there is a tremendous beauty. We might even term it, love ..
 
Last edited by a moderator:

myss

Registered User
Jan 14, 2018
441
I too couldn't help shedding tears at your opening post @Tattooed Mark It took me two goes before I could read it in full. I'm glad I did, it was sad but beautiful at the same time, almost like it was a poem about the grief that dementia causes as you share the journey with your mum that most of us caring or who cared for their loved one can empathise with.

Even the part about the aftermath and the crying one day, then being okay the next day mistakenly thinking that you're handling the grieving process, then wham - there you go again. I can so identify.

My dad passed away 8 months and I'm still getting used to grieving as he is the first death in my family for many years. I was talking about him at length last Friday and was fine, then something small or obscure will come up out the blue and will bring up the point that he is no longer with us.
I try to rationalise it that the lovely man I knew and grew up with had gone long before he died and now I can get on with remembering those nice memories of him than the last ones when dementia had its grip. All the best to you and all others in this thread who've been there.
 

Tattooed Mark

Registered User
Sep 19, 2020
24
Thank you for your reply. Please take care in the future. Not sure if you have heard of them or if they operate in your area, but perhaps if possible consider the CRUISE organisation. They offer support and advice regarding bereavement, either as counselling or just meeting others in a social group. Just thought it might help. Best wishes for the future.
Oh Thanks! I will look them up here and your good wishes are much appreciated! Just greet each day as it comes at the moment,life after being a carer is something not easy to switch back to 'old self.'
 

Tattooed Mark

Registered User
Sep 19, 2020
24
The price one pays for this "bond" - mother and son - is compounded by the " secondary bond" which comes about due to the dementia. You, the son, now play the role of ' mother ' almost literally - the physical tending, feeding, washing and so on. The psychological relationship becomes one of single-minded protection and care. The outside world runs parallel to your insular life, but you rarely step foot outside that insularity. People are kind and complimentary and even siblings have notions which are innocently light years away from the actuality of events taking place each and every moment within the confines of the home in which the two of you live. And so it goes on ....
I slept in the small side room in hospital for one month, watching vigil over my dying mother. She died four weeks off her 100th birthday. They say time is a great healer? The reality is such, that all that has gone before was the "reality" as it took place. The tears, the tumbling out of bed, the traumatic moment in the supermarket, the wonderfully uplifting day out by the canal... all of it was actual. Now it is history.
Your mind retains that " history" in imagery and in remembrance and you resurrect pain or joy or whatever you like, in memory. Memory is not fact. All that took place during that very challenging dementia journey was as real as your own right hand is before your eyes now. When we grieve we restore what has gone. The immense challenge - and it is immense - is in perceiving the " history" or the memories for what they are. Just that. I can smile openly and with the same delight on seeing my mother's picture on her bedroom wall, as if she were actually there. But l know the picture is paper and will fade away one day. All those precious moments with her from my childhood through her Alzheimer's journey, to her last peaceful gentle breaths as she left this turbulent world, are sacred and cannot ever be changed nor destroyed.
In that there is a tremendous beauty. We might even term it, love ..
Yes Indeed,these are wise thoughts,thank you.It must have been so difficult and heartbreaking,for mum to reach nearly 100,that is a long life of many memories to cherish in these difficult times after their passing. I,too,glance over at mum's pictures,imagine her still sitting in her chair as I watch the tv,walk past her room and remember all those moments of tending to her.I take joy in those thoughts but I know the sadness will lie in wait at some point,these times now,feels like I'm stumbling through ghost echoes but the pain is real,as is the love.We are lucky in that we shared all our life so far with mum,a lifetime of memories to look back on and take us forward,hopefully.Thank you
 

Tattooed Mark

Registered User
Sep 19, 2020
24
I too couldn't help shedding tears at your opening post @Tattooed Mark It took me two goes before I could read it in full. I'm glad I did, it was sad but beautiful at the same time, almost like it was a poem about the grief that dementia causes as you share the journey with your mum that most of us caring or who cared for their loved one can empathise with.

Even the part about the aftermath and the crying one day, then being okay the next day mistakenly thinking that you're handling the grieving process, then wham - there you go again. I can so identify.

My dad passed away 8 months and I'm still getting used to grieving as he is the first death in my family for many years. I was talking about him at length last Friday and was fine, then something small or obscure will come up out the blue and will bring up the point that he is no longer with us.
I try to rationalise it that the lovely man I knew and grew up with had gone long before he died and now I can get on with remembering those nice memories of him than the last ones when dementia had its grip. All the best to you and all others in this thread who've been there.
Yes,thank you for your kind words,they all mean so much to me on here.I know it will take a long time to process the grief,maybe I never will,I will just manage the loss of my beloved best friend and mother,whom I'd been close to all my life.Yes,I think I can be fine,I was on a train a week ago and the thought that I used to shave mum's chin with electric razor,she was saying to me 'my chin needs doing?' as she rubbed it,I had to keep the tears back from dropping onto my face covering,then it passed and the business in town took hold.But I know those feelings ever loom on the horizon,strangely I welcome them,they keep me 'real' and 'grounded' in these difficult days we live in,like 'oh well,nothing can hurt me as much as the pain of losing mum,just get on with things!' Yes,mum and your dad,too,would want us to remember them as they were,in their prime,not when age and dementia took hold of their thinking and their character.I wish you all the best too!
 

Hazara8

Registered User
Apr 6, 2015
537
Yes Indeed,these are wise thoughts,thank you.It must have been so difficult and heartbreaking,for mum to reach nearly 100,that is a long life of many memories to cherish in these difficult times after their passing. I,too,glance over at mum's pictures,imagine her still sitting in her chair as I watch the tv,walk past her room and remember all those moments of tending to her.I take joy in those thoughts but I know the sadness will lie in wait at some point,these times now,feels like I'm stumbling through ghost echoes but the pain is real,as is the love.We are lucky in that we shared all our life so far with mum,a lifetime of memories to look back on and take us forward,hopefully.Thank you
Thank you for that. I
 

Hazara8

Registered User
Apr 6, 2015
537
Thank you for that. Yes, one most certainly cherishes the privilege of having been fortunate enough to have a mother living to the near century during which one was able to return the loving practicable help and care which dementia demands so markedly. This world is filled with tragedy and cruelty and unending sorrow, mostly due to man's ineptitude. But dementia belongs to no one. It infiltrates a life and in so doing seems impregnable, oblivious, just a taunting eroding unseen thing, inhabiting a hitherto free spirit, full of life, laughter and simply a human being, whom in this case being a mother. Of course the initial emotional reaction when confronted with such a loss, is raw, confused, embroiled with all manner of feelings, regret, guilt, frustration and exhaustion. As stated before, l have a nice picture of my mother taken on the day we managed a short walk ( in a wheelchair) along a very calm and peaceful Summer blessed canal. In the picture, mother is smiling so beautifully, her eyes bright and filled with the essence of the moment. It was one of those cherished moments set against the often darker moments, the unpredictability of dementia and all that it throws at you during its progress towards the inevitable. So the picture is not a surrogate, nor a crutch, nor a false image - but a recorded moment of a very good interlude in that often painful journey we all recognise so very well. As the years pass and one's life goes on, the picture remains exactly the same and there it ends. The passage of time has nothing whatsoever to do with the moment on the canal. I refuse to interpret that moment nor to embellish it and the picture registers that as a " fixed " image. So, l am saying that the actual moment of any period in that dementia journey - both joyous and painful - remains untouched, despite memory resurrecting it. Perhaps most important of all, is the way in which this whole journey of caring for someone who has been so cruelly compromised by this heartless disease, sheds a light on the things which truly matter. Compassion, empathy, and what it means to be a human being capable of enacting those fundamentals devoid of self interest. Finally, your initial post conveys the 'reality ' of a personal journey clearly from the heart and that takes a certain kind of courage which might not always be found until such a journey is taken and its destination reached.

With warmest wishes
 

Whisperer

Registered User
Mar 27, 2017
218
Thank you for that. Yes, one most certainly cherishes the privilege of having been fortunate enough to have a mother living to the near century during which one was able to return the loving practicable help and care which dementia demands so markedly. This world is filled with tragedy and cruelty and unending sorrow, mostly due to man's ineptitude. But dementia belongs to no one. It infiltrates a life and in so doing seems impregnable, oblivious, just a taunting eroding unseen thing, inhabiting a hitherto free spirit, full of life, laughter and simply a human being, whom in this case being a mother. Of course the initial emotional reaction when confronted with such a loss, is raw, confused, embroiled with all manner of feelings, regret, guilt, frustration and exhaustion. As stated before, l have a nice picture of my mother taken on the day we managed a short walk ( in a wheelchair) along a very calm and peaceful Summer blessed canal. In the picture, mother is smiling so beautifully, her eyes bright and filled with the essence of the moment. It was one of those cherished moments set against the often darker moments, the unpredictability of dementia and all that it throws at you during its progress towards the inevitable. So the picture is not a surrogate, nor a crutch, nor a false image - but a recorded moment of a very good interlude in that often painful journey we all recognise so very well. As the years pass and one's life goes on, the picture remains exactly the same and there it ends. The passage of time has nothing whatsoever to do with the moment on the canal. I refuse to interpret that moment nor to embellish it and the picture registers that as a " fixed " image. So, l am saying that the actual moment of any period in that dementia journey - both joyous and painful - remains untouched, despite memory resurrecting it. Perhaps most important of all, is the way in which this whole journey of caring for someone who has been so cruelly compromised by this heartless disease, sheds a light on the things which truly matter. Compassion, empathy, and what it means to be a human being capable of enacting those fundamentals devoid of self interest. Finally, your initial post conveys the 'reality ' of a personal journey clearly from the heart and that takes a certain kind of courage which might not always be found until such a journey is taken and its destination reached.

With warmest wishes
Dear @Hazara8
Beautifully put in words I would have totally failed to convey. We live life as a movie film but our memories invariably only pull back snap shots. Thank you for explaining the photo of your mother, the canal walk and all that it captured.