Scared of watching my mum fade

[karenbow]

hi all, i fully understand - it is so hard to accept the decisions that have to be made i am still struggling with the fact mum needed a care home - it was the last thing i ever wanted i just wanted for her and i to be together- mum passed away 6 weeks ago she was in her care home 3 months and i feel sad that i could not look after mum til the end and i mull over everything in my mind and i must say although early days you do so start to realise that although hard to bear having 24hr care was needed- i found the not knowing what mum felt, thought or knew was the worst thing to deal with- all i do know is that even tho mum was so terribly ill - couldn,t talk, acknowledge anything- all the symptoms i still felt her a strong presence from mum and i felt she was was with me- i really do believe things will get better for you but just got to take it a day at a time xx

 

[Magpie19]

Hi... My mum is 70 and was diagnosed with Alzheimer's in Sept. She was diagnosed with MCI a year before. The news has hit me incredibly hard and I have never felt sadness like this. My father had a stroke a few months ago so I am caring for him now too and I have a young toddler and feel like I am close to burn out. Mentally it is all a huge load to carry. I have a wonderful family but I don't think anyone can really understand the overwhelming feeling of grief you have when somebody like your mum is diagnosed with this cruel disease. My fears of losing her day by day, bit by bit keep me awake at night. I try to enjoy the time I have with her but she has changed so much already and I know she is depressed. She knows she has 'memory problems' but we don't talk about the A word. Mum seems to have lost all purpose in her life, she is spending so much of the day in bed. Does anyone have any experience of moving home after a diagnosis? I want her to be closer to us so that I can look after her more, I think overall it would enrich her life, but I know it won't be easy. I have all LPA in place x

 

[Sarasa]

Hi @Magpie19 and welcome to Dementia Talking Point. It sounds like you might be experiencing Anticipatory Grief about the situation you and your parents are in. I think it might be a good idea to talk to your GP (not easy in current times I know) about what might be available for you. the Support Line will also be able to suggest ideas. Contact them on 0333 150 3456 and or email dementia.connect@alzheimers.org.uk
Do your parents have any help coming in? Sorting out support for them will enable you to enjoy time with them as a daughter and not as their carers. Your own family, specially your toddler need you too and you can't do everything. I'd also be very wary about moving your parent's closer to you unless you are considering a care home. They may be able to manage quite well in a familiar environment, but would perhaps struggle somewhere new.
I'm sure others will be along shortly with their input, but you might like to start your own thread in the I Care for Someone with Dementia forum. Use the blue button at the top right to start a new thread. In the meantime have look round, this is a very supportive place and you'll get lots of help and advice here.

 

[MartinWL]

There are considerable advantages to being an only child. I am one. Whenever there is an argument about what to do as POA etc I always agree with myself! However much I disagree with my own opinions I always make the decisions!

 

[karenbow]

Hi... My mum is 70 and was diagnosed with Alzheimer's in Sept. She was diagnosed with MCI a year before. The news has hit me incredibly hard and I have never felt sadness like this. My father had a stroke a few months ago so I am caring for him now too and I have a young toddler and feel like I am close to burn out. Mentally it is all a huge load to carry. I have a wonderful family but I don't think anyone can really understand the overwhelming feeling of grief you have when somebody like your mum is diagnosed with this cruel disease. My fears of losing her day by day, bit by bit keep me awake at night. I try to enjoy the time I have with her but she has changed so much already and I know she is depressed. She knows she has 'memory problems' but we don't talk about the A word. Mum seems to have lost all purpose in her life, she is spending so much of the day in bed. Does anyone have any experience of moving home after a diagnosis? I want her to be closer to us so that I can look after her more, I think overall it would enrich her life, but I know it won't be easy. I have all LPA in place x

hi magpie my mum was exactly the same and my heart goes out to you, i was caring for mum with alzheimers and dad who had cancer. when dad passed away all i wanted was for mum to have as comfortable a life as possible and like you sleepless nights etc, worrying about the future-mum needed 24hr care very shortly after losing dad and i even thought about trying to find a care home for mum near the sea (in devon) and us moving to be near her. having lpa gives you so much say in what happens i had the same. but the problem with alzheimers is it goes at its own pace sometimes slow but things can speed up and change overnight -it is a terrible disease- all my ideas of what i could do for mum were dictated by its progress and in a short time i had to accept that any change would be bad for mum- mum was late stage - i was advised it would be kinder for her to stay in the care home which was near to where we live- i just wanted her to be by the sea one last time-it would help you if you could speak to someone about your mums situation you need an honest opinion someone who will tell it as it is X

 

[SaraZ]

Hi everyone. My 90-year old mum has yet to be formally diagnosed. She has had a brain scan and we will get the results in Jan but the letter from the doc has said probable mild Alzheimers. I know in my heart of hearts that it will be confirmed. I am not coping well even though it's supposedly 'mild'. I have nothing to compare her to to see if this is correct and am completely trapped in fear of the future. I worry she will decline too fast for me to cope and I worry she will live for years and years - how horrendous am I?! I can't sleep properly, my hair is falling out. Like a few of you on here, I will be solely responsible as I only have one sibling left, in Italy. I am in the process of arranging home help to see if this works for her and this should be in place in January. My question to some of you is how do you let go of worrying about the future? And is there anything you can do to improve your patience? Thank you.

 

[jennifer1967]

i would say breathe and slow down. each journey is different and you may well worry about things that might not happen. i know it might feelbetter to organise things but take one day at a time and dont worry about the future. take each stage as it comes, no-one can predict how fast or slow it will progress so just deal with each issue your mum needs support with as it happens. get the diagnosis and start from there rather than trying to predict what your mum may need.

 

[karenbow]

Hi everyone. My 90-year old mum has yet to be formally diagnosed. She has had a brain scan and we will get the results in Jan but the letter from the doc has said probable mild Alzheimers. I know in my heart of hearts that it will be confirmed. I am not coping well even though it's supposedly 'mild'. I have nothing to compare her to to see if this is correct and am completely trapped in fear of the future. I worry she will decline too fast for me to cope and I worry she will live for years and years - how horrendous am I?! I can't sleep properly, my hair is falling out. Like a few of you on here, I will be solely responsible as I only have one sibling left, in Italy. I am in the process of arranging home help to see if this works for her and this should be in place in January. My question to some of you is how do you let go of worrying about the future? And is there anything you can do to improve your patience? Thank you.

hi saraZ, exactly as jennifer says- take each day as it comes because you cant predict how this will progress , i had the same thoughts with my mum- worrying if i will be able to cope , how long can mum go on with this awful illness, am i doing the best i can ?? all these thoughts prey on your mind and i found it very difficult to get any rest from constant worry, but as you gradually get help the worry will ease a bit- my hair was falling out too - dad died in may -mum 8 weeks ago , since mum died my general health has been poor but my hair now starting to feel a bit better- you,ve got to really try look after yourself because it is so easy to stop caring- i hope you get the help you need and start to feel better, accepting the situation does help because its a shock and upsetting when you first find out x

 

[SaraZ]

Hi jennifer 1967 and karenbow. Thank you both for your words of advice and support. We all know how difficult it is to switch off and as sad as it is, it helps knowing others are in the same boat. Thank goodness for this site. You are completely right that it's easy to stop caring - the exhaustion from worry does this I think.
karenbow - Condolences on the death of both your father and your mother, that's a very bad blow for you, I'm so sorry.
I will keep checking this site to gain strength and advice from everyone. Thank you all.