Torn, and heart sore

[Big Effort]

I write this here because I can. No one will judge me, and it helps me to be honest with myself.

I am torn. At the moment I don't want to do this any more. But things aren't so simple, and I know Mum will not take the transition into care well. But, you know, I would like to be free of this. It has been four years.... most of it an honour and a pleasure..... but right now, I am so conflicted.

My needs and Mum's needs differ. I wish it weren't so.

To make it worse, she thanked me for being such a loving daughter and looking after her so beautifully. And I? I would like things to be different.

Four days ago, I emailed my siblings to inform them of her ongoing decline (mental faculties, to be precise), asking if they would like updates. No one answered. So I re-sent it last night, just in case they were busy or didn't get round to replying.

I don't resent them one bit. Not at all. Nor would I change places. I just don't understand how they have the capacity to shut their eyes, hearts and minds to their mother.

Physically I have symptoms too. A nasty pain in my left cheek bone that sometimes migrates to my left temple. A stone in my belly.

And tomorrow is another big, busy day. To face, to be professional, to escape in to, even to enjoy. But at the end of it I am so so so tired, because the emotional load I carry is too big, just at the moment. So torn. So sore of heart.

Thank you for reading. Hugs to all and hope you are having a tolerable, even enjoyable day. BE

 

[Moonflower]

OH BE I am so sorry for your pain. i have drafts of long replies to you which don't "feel right" but just wanted to say that I am sorry, and that this too will pass.

 

[Big Effort]

Thanks Moonflower. Yes, it is a difficult crossroads, and yes, this too will pass. Your kindness and even thinking you have attempted drafts is so heart-warming. Good people on here, and you are one of them. Love BE

 

[Pross]

I do so feel for you, being torn in half like that . I wish your siblings were - I was going to say MORE supportive but I gather any at all would be a surprise! You sound such a caring and loving daughter and remarks like your Mother made, thanking you for looking after her so beautifully, must just twist the knife in the guilt you feel when longing for your own life. Big hug and sportive thoughts, Pross. Xx

 

[Anongirl]

No daughter or son should have to go through what you are going through. What many are going through and what eventually I will probably have to go through. There are no words to explain how cruel it is.

My heart goes out to you in every post.

I have no words of wisdom. Just wanted you to know I'm here X

 

[KatieB]

Hello Big Effort, reading your post I felt so sad for you and your mum. I really don't know what to say to you othern than one day, when you look back, you will know that you gave your mum your all.
Stay strong. Sending you lots of hugs.
Katie

 

[studentnurse25]

I can only empathise with your situation, my nan was diagnosed with vascular dementia last year. At around the same time, my uncle (who had previously spent lots of time with her, as well as lots of her money) vanished. I don't mean in a sinister way, he simply stopped visiting, calling and even showing he cared. The responsibility for my nan now rests on the shoulders of my dad and my other uncle, both of whom have their own businesses and personal lives.
My mum has recently placed a lot of information that she has found on vascular dementia into an envelope and sent it to my uncle to try and "shed some light" on what is happening to his mother.
We will not be holding our breaths to see if he has a miraculous change of heart and suddenly spends time with her. However if it does make a difference, we will all be grateful.

One thing you could try BE, is calling your relatives, rather than send a message, as they can "not get" messages, they would find it very hard to ignore a ringing phone.
And the most important thing that you need to remember is to look after your health first, as you will not be able to look after your mum as well as you have been if you are struggling.

Take care
x

 

[Izzy]

I'm sorry things are so bad for you BE. Some of it reminds me of towards the end of my mum's time living with us. She lived with us for 5 years and had Vascular Dementia. My work was an escape but of course full of pressures. We were spared the 'big decision' as she passed away before we got to that stage. Sorry can't help, just empathise.

 

[flowerpot]

BE I know how you feel! We've had two weeks respite and we were away last week just the two of us and it was absolute bliss. We've been home since Saturday and MiL is due back tomorrow. She's been here over three years now. I love looking after her and like your Mum she's always thanking us and she knows to an extent that she's a burden to us but........I'd rather have the life I've had for these two weeks but she's so happy here with us that I just couldn't do it to her. This is the problem we care too much. At least on here we can say what we feel and not feel guilty or at least not too much! Take care BE xx

 

[Sunbell]

Dear BE, I know exactly what you are going through and it is dreadful, this terrible disease, we all know it will never get better, only worse.

I was just the same with my dear mum but realised it could not go on and I needed help. Unfortunately I had left it too long and became very ill myself because you do not just have the care of your parent to think about but your husband, children and grandchildren who all like 'a piece' of you and you have to be with them too.

My mum is now living in a NH, I have many medical conditions myself including bad mobility so I had not a lot of choice in the end and mum is in care where she is looked after and cared for superbly. I still feel I am part of mums care as I visit often but we now have special time together instead of getting upset, frustrated and anxious with each other over the caring at home. She took a bit of settling but with the help of the carers we managed it.

If your mum did not have this disease I bet she would be telling you to carry on and enjoy your life and she would be in good hands in care, not many mothers would want to hold their children back, especially as most of them are at, or nearly at, retirement age themselves.

Please take care BE and remember there are lots of us here in, or been in, the same emotional predicament as you. Your life must go on with your husband and would think in all reality this is what your mum would want you to do.

You are not alone, you can let your feelings pour out here, we all know what an emotional rollercoaster this illness is, keep posting.

Sunbell

 

[lilysmybabypup]

I'm so sorry you're having such a difficult time, and not getting the support of your siblings is simply wrong, sorry, but these burdens should be shared.

You sound so heartbroken and guilty. I know your feelings because I have them too, and then I hate myself for thinking them.

Dad has had AD for 7 years and, while Mum lives with him and is his carer, I'm the one who does all I can to support her and keep her well. I'm not trying to sound like a wonderful person, we're a close family and I love them dearly but I feel resentful deep inside. Mum can't drive, Dad can't be left, she gets a little respite and housework done, but in the end I am the one who is there every day, shopping, cooking, showering, inventing ways to solve the next problem Dad throws at us, like weeing on the bedroom carpet. I have had certainly dreams put on hold. How horrible do I feel about such thoughts?

BE, you've written my thoughts, so you're not alone, and I guess we really aren't horrible daughters, just tired and sad.

I have a sister who is wonderful and we are close, so in that way I can't complain. But our lives are at different stages, she's much much younger, married late and has a toddler, works part time and lives 45-60 mins away, depending on traffic. She goes and does Dad's shower one day on the weekend, which is good since she has a hectic life. My children are grown and I've given up work to help Mum, and I live 10 mins away. But I still felt so angry and jealous when she said they were flying interstate for a week soon for a sunny beach holiday. I can't go on holiday, I just can't leave Mum and Dad.

I also had big ideas of selling up and moving closer to the city, we were waiting for our youngest to finish high school, that was 2 years ago, but we can't move away now.

I'm sorry, this long-winded rant is to let you know you aren't alone in thinking and feeling the way you do. And I'm sure Mum thought she might be allowed to relax and enjoy her golden years with her loving husband, instead of the constant exhaustion and waking 5 times a night. And we can only do what we can do, and when the time comes when we just can't go on, we have to brave and honest and place them into the care of those who are equipped and able.

So, I suppose we will pour out our hearts here, finding acceptance from kindred souls and empathy when we feel we are being selfish or that dreadful guilt monster rears its ugly head.

Please forgive yourself, BE, you're a wonderful daughter and you're doing something very special that those who haven't helped will sadly miss out on. You are getting the special and precious moments with your mum, moments you can treasure up and store in your heart.

Stephanie, xxx

 

[Delphie]

Hi BE

Why not have a look and see what kind of care would be available for your mum, if you really couldn't do more for her at home?

The residential care option may not be as scary as you think, and I firmly believe that having a plan B, if possible, is a good thing. Just knowing there is a plan B helps when plan A isn't going so well.

I too didn't think my mum would take well to residential care. She is an active, independent woman who likes to do her own thing. But Alzheimer's robbed her of the ability to execute her plans and her life was shrinking down to nothing more than a constant round of difficulties as I tried to keep her independent and out of care.

The thing is, I found a fantastic care home, and she really likes it. Even when she's furious with me for not being there (so we can set off on a trip or that I haven't visited in 50 years or whatever) she is full of praise for the place itself. I'm not sure where she thinks she is but she has an apartment (her room) and the food is delicious and they apparently love her singing (she's not exactly gifted, but very enthusiastic), and all in all she is happier there than she was at home. And I'm definitely happier. Like you, I was having physical symptoms of stress and however I tried to manage that, nothing really worked because dementia is so &*%^$£ unpredictable. Just when I though I managed to sort things out, something else would happen. It was relentless.

So while this phase of feeling as you do may pass, equally you might find yourself unable to keep caring, if not now than in the future. Being prepared for that can't hurt. You could even pop her name down if there's a waiting list somewhere you like, then keep passing it up as places free up, always knowing that if one day you can't face more, you have a plan.

The caring doesn't stop with a move to residential care, so you'd still be the same old you, the loving daughter doing all she can for her mum, visiting, taking her for trips out, bringing treats. But the lion's share of the physical care would be taken from you.

It's worth thinking about, for the future, if not for now.

 

[Canadian Joanne]

BE, I completely understand how you feel and how exhausted you must be. So often we have no other option but to have our loved ones go into long term care.

I'm sure that your mother, if she were well, would not want you to sacrifice your life and/or health for her. Remember that.

 

[CollegeGirl]

Hi BE, once again I don't really have any words of wisdom, but I do know that it's perfectly reasonable for anyone to want to have their own life. You, me, your mum, your hubby, my hubby, my mam, my dad etc, we are all individuals and none of us is more important than any other.

Some of us need more help and support than others, of course, but I truly believe that it shouldn't be at the sacrifice of someone else's life.

I certainly don't want my husband or children to sacrifice themselves for me. I don't want them to stop caring, just not at the expense of their own lives.

I hope you can work something out that will sit easily for you. You have my utmost respect, and also a hug xx

 

[bemused1]

BE I can only say I am so sorry for your pain. Whatever path you take your mum has been truly blessed to have you.
As for family who Don,t want to know, they are familiar to us all.

 

[at wits end]

Hi BE.

I have read your recent posts with concern over your situation. You have tried SO hard. You have made SUCH a big effort with your Mum. But is is exhausting isnt it. The one comfort I take with my gran since she moved into the NH is that i CAN be ill, my kids and husband can cope with me not being up to it for the day, if I was still Nan's carer she wouldnt be able to cope if I had a day off sick. Yesterday I felt rubbish and didnt get out of my pj's all day. I just lolled about feeling ill. Today I visited her and apologised for not visiting yesterday but she hadnt noticed of course.

She even seems to be having days of being settled at the NH, she certainly loves all the staff and the food. Today she had dinner with three doctors (alledgedly) and yesterday she went to a wedding reception (again, alledgedly). She says the active social life she has there is exhausting!

I am worried if you do not step back soon you may be forced to. Not a good situation to be in for anyone. Perhaps you could try some respite for your Mum? See how she likes it. Gran was adamant she didnt want to go anywhere, but when it came to it she went off without question.

 

[rjm]

BE, whatever choice you make, nothing can take away from what you have done for the past 4 years. If you stay on this path and collapse who will be there to care for your mum? But if you take a different path, no matter how difficult it is for your mum, you will be there to help her along it. Sometimes the choice isn't between good and bad, but between two routes, neither of which is good.

Thinking of you as you stand at the crossroads,

 

[Scarlett123]

What a rotten time you are having, and I think it is totally unfair that this is all on your shoulders. But isn't it great that we can come on here and tell it, as it is, without fear of anyone judging us, or saying "well, if that was me, I'd do x y or z".

It's darn lonely pushing the plough, all on your own, when you have siblings who could lessen the burden, if they wanted to. And as far as not even replying to your emails, I expect they're loathe to offer any help, just in case it should be accepted!

Scarlett123 xx

 

[Big Effort]

Thank you all for the support - the kind of support you get on TP from people who know.

My siblings do not feel responsible for Mum. They would have put her where all old people belong at a certain point: a home. No wonder she came to France, as she knew I don't see life so black and white.

In their defence, one is recovering from major burst aneurysm and is currently in rehab himself. He isn't in a position to support as short term memory problems abound. Another lives in the other hemisphere, and they are understanding and caring but cannot give respite - hence why I think they haven't seen the email. Sis in UK could help, but I think is crushed totally by the very concept of Mum with Alz. No can do. As I said, I understand, and it is a very good place to be in, not to harbour resentment.

Life is funny. Today we got an enquiry for our house - wonderful place just on the sea in Ireland. Selling is important for us as we could then pay for care, some hours a day. And my boss just phoned to say he really likes how I work with the clients, and he intends to strengthen our relationship and I will be getting more and more.

I am OK. Not sick. Not in danger healthwise. Just it is a horrible situation to observe. Mum is unable to do anything for herself. So needs us to do all her thinking for her (phrase is courtesy of Mary Newark, coconut oil lady and it is so apt). But she is failing. I think she will soon not really care about her surroundings any more, and that will be the right point for specialised care.

I think you each and every one of you for the kindness and understanding. Spoke to my sis today (just to highlight the difference between walking the walk and thinking you do), and she said she has friends with a mother who has Alz, and it is very distressing for the carers! No mention at all of her mother, so denial is a strong family trait!!

Hugs and sincere thanks. Feeling a good bit better already. xxx BE

 

[tarababe]

BE, I completely understand how you feel and how exhausted you must be. So often we have no other option but to have our loved ones go into long term care.

I'm sure that your mother, if she were well, would not want you to sacrifice your life and/or health for her. Remember that.

I have to ecco CJ on what she has said. You are well aware of my situation and more so recently having lost my dear mum and all I will say is whatever you decide will be hard. I went through exactly the same and my mum didn't live with me yet it was phyically and mentally exhausting.

A big hug of support goes out to you from me as you have also been such a support on here to me and many others.