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Struggling: what do I do?

MK1

New member
Sep 21, 2021
5
0
My mum is 82. She has been my best friend and my morale compass all my life. 5 yrs ago she was diagnosed with chronic uti and unspecified demetia linked to the uti. Focus was on the uti's which have not subsided. I have battl3d to get support and insight from joined up services but my mum is no longer the person I know. She is always agitated, afraid, hallucinates. She sometimes knows my name and face but not our relationship. She has become abusive and aggressive which is hard to take and she has the same repetitive conversation over and over, day in and out. She doesnt recognise her own home most of the time. I can no longer cope. I share a patched up care with my brother and both are reluctant to admit we can no longer do this. We live her immensely and her windows of vulnerability is what keep us going but even for me this is now wearing thin and I can no longer cope and dont want to just keep soldering on like this. The nights of not sleeping because she is hyper agitated and the daily toiletting disasters is now too much for me. All of the services have been of little help and I am exhausted from having to manage them and prompt them to work together with little feedback or options for me. I am lost, I dont know who I am anymore and where my life starts and my mums ends. So much energy is taken to supporting my mum and her wishes I have nothing left for me. I feel a huge amount of guilt, sadness and that I have let her and myself down by now wanting to consider placing her in care. Am I wrong? Is it too soon? Should I keep trying to make it work? I dont know what to do. This decision is huge and I feel massively plagued by guilt but I dont feel I have any more to give. I cant stop crying as I dont knkw what to do. My brother defaults to me but this is epic for me. I love her so much, I have tried to protect her. I miss her but I am not in control and cannot ignore this feeling of being overwhelmingly trapped, a sense of duty and loving her and wanting to protect her as best I can. Has anyone else felt like this? Helpless!
 

kindred

Registered User
Apr 8, 2018
2,751
0
My mum is 82. She has been my best friend and my morale compass all my life. 5 yrs ago she was diagnosed with chronic uti and unspecified demetia linked to the uti. Focus was on the uti's which have not subsided. I have battl3d to get support and insight from joined up services but my mum is no longer the person I know. She is always agitated, afraid, hallucinates. She sometimes knows my name and face but not our relationship. She has become abusive and aggressive which is hard to take and she has the same repetitive conversation over and over, day in and out. She doesnt recognise her own home most of the time. I can no longer cope. I share a patched up care with my brother and both are reluctant to admit we can no longer do this. We live her immensely and her windows of vulnerability is what keep us going but even for me this is now wearing thin and I can no longer cope and dont want to just keep soldering on like this. The nights of not sleeping because she is hyper agitated and the daily toiletting disasters is now too much for me. All of the services have been of little help and I am exhausted from having to manage them and prompt them to work together with little feedback or options for me. I am lost, I dont know who I am anymore and where my life starts and my mums ends. So much energy is taken to supporting my mum and her wishes I have nothing left for me. I feel a huge amount of guilt, sadness and that I have let her and myself down by now wanting to consider placing her in care. Am I wrong? Is it too soon? Should I keep trying to make it work? I dont know what to do. This decision is huge and I feel massively plagued by guilt but I dont feel I have any more to give. I cant stop crying as I dont knkw what to do. My brother defaults to me but this is epic for me. I love her so much, I have tried to protect her. I miss her but I am not in control and cannot ignore this feeling of being overwhelmingly trapped, a sense of duty and loving her and wanting to protect her as best I can. Has anyone else felt like this? Helpless!
I so agree, it is time for care. you can then spend time with her and be a loving daughter again.
 

brambles

Registered User
Sep 22, 2014
250
0
NW England
I can remember feeling exactly the same as you. My brother and I were exhausted and in despair looking after my lovely mum at home.
We bit the bullet and found her a nice carehome and,to be honest, they look after her so much better than we were able to . She is content, and we can visit her and take her out for coffee, a little walk or a sit on the prom.
Please don't make yourself ill struggling on, you have done your best.
((((hugs))))
 

karenbow

Registered User
May 24, 2021
35
0
dear mk1- everything you say is exactly the same with me- my mum did not become abusive or aggressive but everything else in your post i felt and am still feeling- i cant advise whiat is best for you but i knew deep down i could not give the care mum required without my becoming ill myself- dad died in may and mum came to live with us then 4 days later mums alzheimers really got bad, bedbound , incontinent, cannot speak, needs feeding etc - i had to make that really sad decision for mum to go into nursing home and like yourself my mum means the world to me-at first i found myself finding fault with the nursing home i wanted mum to be happy well looked after- i never questioned mums home this was just me wanting some sort of reassurance i,d done the right thing, then after a while getting to know them watching them and realising i really could not provide for mum the care they give- they are also very kind- i have sort of accepted it was the right decision-i have upsetting days with mum seeing how she struggles but ive had a couple of really good days- i dont think mum knows who i am but her eyes show love for me and its these times where i am grateful i can just sit with mum and be content and i think she is with me too- it is really hard but if you are anywhere in the frame of mind i was and it will get more difficult - you will need to help yourself keep well because what ever happens you will need your mum wherever she may be and you must stay well to keep up the loving relationship you have - x
 

jonnieboy255

Registered User
Oct 10, 2019
12
0
MK, broke my heart reading this. Sounds like you've done enough, more than enough. It sounds like care would be the best place for your mum.
Big hug from me too !
 

Marler19

Registered User
May 16, 2021
41
0
Dear @MK1 - please understand you have done your best! I looked after my beloved mum for 2.5 years and eventually she needed a care home. It has been incredibly hard but like you my health really suffered. We all have to remember that it’s now the dementia taking over and the person they once were would never have wanted you to be so stressed and unhappy. My mum will never be fully happy in the care home although she has many smiley moments and loves going for a walk out, but then she wouldn’t be fully happy anywhere. It sounds like high time to put yourself first! The ‘real’ mum would want you to. It’s so hard to lose them! Many many sympathies!
 

Sarasa

Volunteer Host
Apr 13, 2018
3,710
0
Hi @MK1 , moving your mother into care doesn't mean you've failed or that you don't love her enough. Dementia takes all it can, and then wants more. Find a good home for you mother and then you and her brother can become her loving children again.
My husband's brother tried for years to keep their mother in her own home. He only accepted that they needed carers last Christmas, and though they helped it wasn't enough. MiL moved into care a couple of weeks ago. Firstly I don't think she's really noticed she isn't at home as the home tried to make her room as much like her old one as possible. Secondly she looks much better as there are people on hand to look after her twenty-four seven. Thirdly her children and their families are visiting regularly and enjoying her company far more than they have done for a long time.
 

MK1

New member
Sep 21, 2021
5
0
Hi @MK1 , moving your mother into care doesn't mean you've failed or that you don't love her enough. Dementia takes all it can, and then wants more. Find a good home for you mother and then you and her brother can become her loving children again.
My husband's brother tried for years to keep their mother in her own home. He only accepted that they needed carers last Christmas, and though they helped it wasn't enough. MiL moved into care a couple of weeks ago. Firstly I don't think she's really noticed she isn't at home as the home tried to make her room as much like her old one as possible. Secondly she looks much better as there are people on hand to look after her twenty-four seven. Thirdly her children and their families are visiting regularly and enjoying her company far more than they have done for a long time.
Thank you for your feedback. I really appreciate it and has been a massive help.
 

Cazcaz

Registered User
Apr 3, 2021
160
0
@MK1 you are a wonderful, loving person who has done as much as they possibly can. No relative would expect you to do any more, including your mum.

Now is the time to ‘get things sorted’ as they say. Get a carers assessment, get respite care and get some rest.

Then look into long term care which needs a bit of planning, especially if anyone lives with your mum and if she will/won’t be self funding.

But first, take care of you, no one else can. You’re not alone.
 

MK1

New member
Sep 21, 2021
5
0
@MK1 you are a wonderful, loving person who has done as much as they possibly can. No relative would expect you to do any more, including your mum.

Now is the time to ‘get things sorted’ as they say. Get a carers assessment, get respite care and get some rest.

Then look into long term care which needs a bit of planning, especially if anyone lives with your mum and if she will/won’t be self funding.

But first, take care of you, no one else can. You’re not alone.
Thank you. A
@MK1 you are a wonderful, loving person who has done as much as they possibly can. No relative would expect you to do any more, including your mum.

Now is the time to ‘get things sorted’ as they say. Get a carers assessment, get respite care and get some rest.

Then look into long term care which needs a bit of planning, especially if anyone lives with your mum and if she will/won’t be self funding.

But first, take care of you, no one else can. You’re not alone.
Thank you. Your words have really resonated with me and not made me feel so alone.
 

MK1

New member
Sep 21, 2021
5
0
Hi @MK1 , moving your mother into care doesn't mean you've failed or that you don't love her enough. Dementia takes all it can, and then wants more. Find a good home for you mother and then you and her brother can become her loving children again.
My husband's brother tried for years to keep their mother in her own home. He only accepted that they needed carers last Christmas, and though they helped it wasn't enough. MiL moved into care a couple of weeks ago. Firstly I don't think she's really noticed she isn't at home as the home tried to make her room as much like her old one as possible. Secondly she looks much better as there are people on hand to look after her twenty-four seven. Thirdly her children and their families are visiting regularly and enjoying her company far more than they have done for a long time.
Thank you.
 

MK1

New member
Sep 21, 2021
5
0
I would just like to say a big thank you to all of you who have responded so quickly. I am now overwhelmed with your kind words, practical advice and reasoning and dont feel so isolated in what I need to do next. Instead I am crying because someone understands the torture you put yourself through to deal with this horrible disease. You are a fantastic network.
 

Rosettastone57

Registered User
Oct 27, 2016
1,593
0
There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. I think you have well and truly come to that point. It's a care home but I think deep down you realise that