Grieving but mum is still alive...

[Sarah1208]

This is a very strange feeling. So having cared for mum for years she went into a care home 7 weeks ago. It’s been a rough journey...Covid, no visits at first, she wants to come home, a UTI, 2 falls, losing weight...but she’s ok and the home is good. Ive just cleared the house where she lived for 53 years and I grew up.
until she went in the care home I spent a huge amount of time at her house, shopping, cleaning, supporting her dementia and anxiety and took up to 20 calls per day/night. I am an only child so it was only ever me. I’ve felt dreadful since she went in, the guilt is huge, it’s consuming, I’ve not been in a good place but today I felt like something was starting to feel different...it was strange and I couldn’t work out what it was...and then I realised I felt like I was coming to terms with her not being around and not ‘having’ to constantly consider her needs.
It then made me realise that these last few weeks have I been grieving for losing her?? Even though she is still very much alive? It feels wrong that I am feeling some relief and enjoying some time with my family. It’s like I keep ‘forgetting’ about her??

 

[Lorna44]

I felt exactly the same, I felt awful clearing my mums house while she thought she was coming home in a few weeks. Taking most of her possessions to charity shops, it felt like such a betrayal. I have never cried so much for the mum I lost in mind but not in body.
I felt guilty enjoying myself and doing lovely things with my family & friends, but in my heart, deep down, I know my Mum of old wouldn't have wanted me to give up anything for her.
Mum died last year and I miss her so much but I know that having mum safe in a nursing home for those last few years was the right thing for her. Big hugs ?

 

[Bezzy1946]

I feel guilt every day since my husband went into a care home in February. I feel
guilty going out and seeing our children and grandchildren. Sometimes I do forget about him and then it hits me the guilt that he is not sharing the happy times. I know I couldn’t look after him anymore but I still miss him so much. Just had a lovely afternoon and am now lying in bed crying as I am writing this. Hopefully as time goes on it will get easier

 

[Hazara8]

I feel guilt every day since my husband went into a care home in February. I feel
guilty going out and seeing our children and grandchildren. Sometimes I do forget about him and then it hits me the guilt that he is not sharing the happy times. I know I couldn’t look after him anymore but I still miss him so much. Just had a lovely afternoon and am now lying in bed crying as I am writing this. Hopefully as time goes on it will get easier

When a loved one is at home and despite the trials and tribulations of care in the world of dementia, there is nevertheless that sense of control both in the actual caring and the psychological - the fact that the loved one is at home where they belong. This " guilt" phenomenon comes about once that 'control ' is taken from us. The absence of a loved one alone is often traumatic. The house changes in environment and that absent person becomes a constant nagging and painful " thought" in the mind, clouded with a sense of guilt and helplessness combined. Your normality in daily life, family visits, perhaps a coffee with an old friend, or whatever engages the mind for that moment and you are not thinking about the loved one. Later on you feel decidedly uncomfortable about that break in your thought process, as you describe. The guilt.

The reality is, that you have no choice in respect of the transition into Care for the loved one. Otherwise you continue as before and one day that Care implodes due to the progress of the disease, the sheer level of physical care overwhelming you, the situation becomes a " blue light" scenario and you enter a kind of Hell on Earth. Something l would not wish on any living soul.

So the " guilt" should be gently removed from the mental vocabulary. Your own ' needs' are paramount in order that you retain the energy and health to function both physically and mentally. And yes, the tears are wholly legitimate as and when you feel like it. There is compassion in tears. Whilst that " absence " of a loved one is fact, you move with that fact because the ' best interests ' asks you to respect it. But the 'guilt ' should be quietly waved goodbye. Then see what happens.....

With warmest wishes.

 

[Bezzy1946]

When a loved one is at home and despite the trials and tribulations of care in the world of dementia, there is nevertheless that sense of control both in the actual caring and the psychological - the fact that the loved one is at home where they belong. This " guilt" phenomenon comes about once that 'control ' is taken from us. The absence of a loved one alone is often traumatic. The house changes in environment and that absent person becomes a constant nagging and painful " thought" in the mind, clouded with a sense of guilt and helplessness combined. Your normality in daily life, family visits, perhaps a coffee with an old friend, or whatever engages the mind for that moment and you are not thinking about the loved one. Later on you feel decidedly uncomfortable about that break in your thought process, as you describe. The guilt.

The reality is, that you have no choice in respect of the transition into Care for the loved one. Otherwise you continue as before and one day that Care implodes due to the progress of the disease, the sheer level of physical care overwhelming you, the situation becomes a " blue light" scenario and you enter a kind of Hell on Earth. Something l would not wish on any living soul.

So the " guilt" should be gently removed from the mental vocabulary. Your own ' needs' are paramount in order that you retain the energy and health to function both physically and mentally. And yes, the tears are wholly legitimate as and when you feel like it. There is compassion in tears. Whilst that " absence " of a loved one is fact, you move with that fact because the ' best interests ' asks you to respect it. But the 'guilt ' should be quietly waved goodbye. Then see what happens.....

With warmest wishes.

Thank you for your lovely reply
Best wishes xx

 

[jaymor]

I think we all have these feelings and thoughts. When my husband went into his nursing home and settled I realised that becoming a wife again and no longer caring to such a level was good.,I never called myself a Carer, I remained his wife as I do today. I’ve never called myself a widow once in the four years since his death.

I’m sure in our ‘ normal life ‘ we did not think of our loved ones every single minute of the day, we got on with our lives and there is no shame and should be no guilt in doing the same once our loved ones are in care and someone else is easing our burden.

We have earned this less stressful part of dementia, grab it with both hands and run with it, it may not last long.

 

[Canadian Joanne]

When my mother went into the nursing home, after being sectioned, I think I cried for three months, at anything and everything. The mother I knew and remembered was gone, replaced by this rather unpleasant and scared person. The hardest thing I ever did in my life was bringing her to hospital under false pretenses and having her sectioned.

Now your mother is being cared for and you are in the process of picking up the pieces of your life. Would your mother want you to destroy your own life to take care of her? I think not.

The guilt can be overwhelming but it is not justified. Please do your best to ignore the guilt. It will become easier to cope with as time goes by but it certainly can sneak up on one unexpectedly.

 

[Sarah1208]

Thank you all for your replies. It all makes sense. I just wish the visits were going better. I went to see mum again today and yet again she cried the whole time saying she missed everyone and she wanted to go home. She said she felt like I was trying to “wipe her away”and she insisted I hadn’t been for over a week even though I was there on Thursday. We both ended up sobbing then she asked for a hug but I wasn’t allowed. It’s heartbreaking. But when the carer came to clean her up from the cream cake I had taken her which she absolutely loved she smiled at her and said thank you that was lovely and had a bit of a joke with her. It’s like she has forgotten everything I have done and been through for her. I don’t resent it I just want her to know that I love her and want her to have the right care. I just can’t see it getting any better.

 

[DaveCr1968]

This is a very strange feeling. So having cared for mum for years she went into a care home 7 weeks ago. It’s been a rough journey...Covid, no visits at first, she wants to come home, a UTI, 2 falls, losing weight...but she’s ok and the home is good. Ive just cleared the house where she lived for 53 years and I grew up.
until she went in the care home I spent a huge amount of time at her house, shopping, cleaning, supporting her dementia and anxiety and took up to 20 calls per day/night. I am an only child so it was only ever me. I’ve felt dreadful since she went in, the guilt is huge, it’s consuming, I’ve not been in a good place but today I felt like something was starting to feel different...it was strange and I couldn’t work out what it was...and then I realised I felt like I was coming to terms with her not being around and not ‘having’ to constantly consider her needs.
It then made me realise that these last few weeks have I been grieving for losing her?? Even though she is still very much alive? It feels wrong that I am feeling some relief and enjoying some time with my family. It’s like I keep ‘forgetting’ about her??

Hi Sarah

My mum passed away suddenly and dad's dementia had deteriorated significantly, so he needed residential care. At the moment, I feel like I have lost both parents within the space of a few weeks. You aren't alone and the guilt of putting him in a care home was horrendous. Dad is doing well and I now realise it was best for him.

Regards

Dave

 

[Sarah1208]

Hi Dave, thanks for your reply, I am sorry for your loss it sounds like an awful few weeks for you. I know my mum is in the right and only place for her now I just wish she would settle a little and stop punishing me. Everyone says it’s her dementia talking but the reality is for years now she has made me feel guilty for living my own life. The dementia and the care home situation has just made it worse. I hope you dad continues to do well, that’s all I want for mum.

 

[velocity]

Hi. I would like to reiterate every feeling all of you have said.
i was feeling down this morning with these feelings (Mum has dement)
All of your words have helped although very sad.
I find as if dementia isn’t bad enough it’s sometimes the hoops we have to jump through
which affects our loved ones can be enormous.
Thank you

 

[DaveCr1968]

Hi Dave, thanks for your reply, I am sorry for your loss it sounds like an awful few weeks for you. I know my mum is in the right and only place for her now I just wish she would settle a little and stop punishing me. Everyone says it’s her dementia talking but the reality is for years now she has made me feel guilty for living my own life. The dementia and the care home situation has just made it worse. I hope you dad continues to do well, that’s all I want for mum.

Hi Sarah

Yes, a horrendous few weeks.

One thing I have realised is that we don't understand what is going on in their mind and they can't help their actions. It may well be they are scared, frustrated or just downright confused and is causing them to act in the way they do.

Regards

Dave

 

[Lorna44]

[USER=87453]@Sarah1208 its a hard thing to do when you feel so sad, but when you see mum have a bright & breezy look, always smiling. I found that my mum always picked up on on my body language & facial expressions. So no matter how I felt, I tried (sometimes unsuccessfully!?) to keep it light and cheerful. To distract her and help change the subject and I always took a treat, a cream cake, a chocolate bar, her favourite macdonalds milkshake! So when it got rough, I would produce food!
It took mum months to settle, but she did and it got better. Hang in there x