Feeling Lost

[Livine1]

We lost our mum yesterday, after looking after her at home for over 7 years, and my dad for the 10 years before that before he died in 2005. Both had dementia, and both had different needs, so needed entirely different responses.
It is a devastating disease, we are at the beginning stages of grieving for my mum, but have pulled together as a family in spite of the difficulties and emotional trauma, lack of services, poor health care and strange lack of GP support, mixed with exceptionally kind and thoughtful responses here and there. We have essentially cared for my mum on our own however, and are proud, glad and sad that we enabled her to die in her own home with people she loved and who loved her.
It's been exhausting, and it is a relief she is no longer in pain and mental anguish and torment, but tragic that we have lost her, although we recognised that her true personality was lost some time ago.
We loved her anyway, and hope that anyone who is going through this as a carer will take comfort in the fact that your loved ones have had your loving support through their illness and you've made their lives better as a result.

 

[Fullticket]

I hope I don't sound too selfish in saying this. Mum died in February this year and I had looked after her part time and then full time for about 10 years or more. She was not the best of parents and I had always said that I would never be responsible for her when she got old. But... first you start the finance advice, then you get on to personal care, then you move them in with you, etc. etc. At first I felt, "why me?" Then I thought about it in more depth and decided that, faults or no, she had done the best she knew of how to be a parent given the start she had in life (I won't go into it here, too long a story). So in a sense I "forgave" her for not being a perfect mother and after that we got on better and I did my best.
Now she is gone and of course I feel guilty - why didn't I do such and such, why didn't I see that last illness (practical head says I am not a doctor so how could I see a physical illness masked by dementia; heart says I could have done more)? But I look at it now knowing that I had very little experience of dementia pre looking after mum, so I did what I could on a steep learning curve and there are a lot of things I did well and should be happy about. There are things I could have improved on but who starts a job and does it to perfection first time?
I am forgiving myself for not being perfect. I'm not there yet but it's coming. Already I am thinking more about the silly, humorous times and less about the stressful times and that is, I hope, the way to go. One thing that resonated with me was a comment in a card from one of the ladies who ran a memory group mum attended. She said mum was one of the most contented people she had known, dementia or not... I can't honestly say she was like that at home (!) but I was really pleased to know that she was happy in herself some of the time; probably due to their skill and professionalism but it is nice to know she was content.

 

[Suzanna1969]

Josie, I honestly could have written your post myself.

My lovely Mum died in February after battling Mixed Dementia for over 6 years. Her funeral was in March. My 90 year old Dad (who suffers from Vascular Parkinsonism) and I delivered the tributes. Somehow we managed to hold it together.

Everyone at the funeral was saying how my brother and I were so marvellous and couldn't have done any more and I felt such a fraud. So many times in the last few months particularly when she had deteriorated so badly I had felt so resentful of our situation and I wished it could all be over for all our sakes. Yes I could have done more, I could have spent more time looking through the photo album with her (the only thing she enjoyed towards the end), or made more cakes for her and Dad, or taken her to a garden centre to give Dad some space. In the days between the death and the funeral I wished I had been a better nurse to her, I wished I hadn't got cross, I wished I had been more patient, I wished I was just a better person.

And I was so bitter about what we'd all had to go through. That my lovely Mum had been taken away from us, piece by piece, leaving a frightened, sometimes violent shell who lost the ability to speak, refused to wash, wasn't able to dress herself and was doubly incontinent. The person she was would have been so mortified by what she became.

And yes, my brother and I talked about how we were fearful that the wonderful memories of our idyllic childhood would be taken over by the experiences and feelings of the last few years.

I am so happy to say that those fears were unfounded. Now that she has gone I remember the happy times, daft things she came out with, funny events that still make me laugh and just what a wonderful Mum she was. Writing my tribute for the funeral helped with that and also going through her things, finding cards we'd made as kids that she had kept in her divan drawers for 40 years, her hair curlers, her crochet hooks and little knick-knacks that just were HER. Yes I cry when I think of the lovely times we had but they are, I think, good tears. The misery and horrible things that went with advanced dementia will never leave me completely, but they were not my Mum, they were something separate.

I still acknowledge, in my heart of hearts, that I could have done more but it would have been at the cost of the few shreds of my life I had left to me. At the end Mum had a fall which set off a chain of events including infection and, we think, pneumonia. The GP said we had to look at End Of Life Care and just 5 days later she had gone. The local hospice were amazing and sent carers round twice a day to do Personal Care, which was such a relief, especially as we didn't have a Profile Bed. We all got the chance to say goodbye but her final illness was not drawn out, thank goodness. She was at home right up until the end and that IS something I am proud I managed to accomplish.

She died at 2am. I was laying beside her holding her hand. Bert the cat was curled up at the foot of the bed. Her breathing had changed so I knew it was close, so I told her Bert and I were there and she wasn't alone. I told her I loved her and was very proud to be her daughter. I promised her I would look after my Dad and my brother so she didn't have to worry. And then she took her last breath, like she had just been waiting to hear that so she could go.

The time between the death and the funeral is a sort of state of limbo. Since then I have managed to let go of the feelings of guilt and fear that I hadn't been the saint everyone seems to think I was, because I am not a nurse by profession, I didn't have a shift that only lasted a finite period of time and then go home to my 'normal' life, I was on duty 24/7 and I am human and imperfect and sometimes get cross or act in a thoughtless way or say things I regret when I am exhausted and distraught knowing I am losing the person I love most in the world.

Now I find myself talking to Mum in my head. Sometimes I'm in the car mulling over a problem, sometimes I'm watching a TV programme that she might have liked, sometimes I'm making a cake and asking her advice about how much baking powder to add if half the flour I used was plain by mistake... I didn't do that when she was ill because she was still 'here', even though she wasn't. Someone at the funeral said 'At least you can grieve now' but in a way I did my grieving while she was still alive, because I'd lost my Mum a long time ago. Now I am free to miss her, and part of the missing her is having the happy memories come back, tears and smiles and all.

I honestly believe they will for you, too.

 

[Scouts girl]

Perhaps the day will come when I can remember my lovely mum with more smiles than tears.
Nothing can prepare you for the heartbreak that caring for a loved one with dementia can bring. The decision to move my mum into a care home was taken out of my hands following me nearly reaching carers breakdown and realising I could no longer give her the 24 hour specialised care she now needed. I had been her sole carer for a couple of years but when she started to succumb to this dreadful disease it just became too much for me to bear and I knew I had to get help.
Mum was moved initially for emergency respite care but when she was officially diagnosed with vascular/mixed dementia I knew that the move would be made permanent. I just felt an overwhelming guilt that I was not able to talk to her beforehand and explain the reasoning why I could no longer look after her on my own and that I needed her to be safe and well looked after. I tried and tried on numerous occasions, when visiting her daily, to try and tell her why she could no longer live on her own at home but she just blamed me for ‘dumping’ her and that myself and the family did not want her any more. I shed so many tears during the year she was in her care home and the feelings of guilt just completely drained me. I repeatedly told her that I loved her, spent every day sitting with her, holding her hand trying to come to terms with the seemingly endless journey that we were both going through but mum never settled in her new environment despite having company and amazing care from the staff at the care home.

Her illness got progressively worse very quickly and I was still trying to cope and prepare myself that she would not be in my life for much longer. The anticipatory grief I felt during her last few weeks was so distressing and was having an impact on my wellbeing and health. I was not with her at the end, just having left her to pop home to get some rest. I shall have to try and forgive myself for not being there when she died, if only I had stayed another couple of hours, but I just hope in my heart that it was a peaceful end as the staff reassured me it was and I hope that in her own way mum had forgiven me for not being able to look after her at home. I know she is at peace now and free from the struggle that this illness can bring but she will never be forgotten and I can only hope that in time I can forgive myself too and overcome this overwhelming feeling of guilt that I have.
I have so many happy memories of mum before dementia and in time these will bring me peace and comfort.

It is so comforting to know that others are going through these feelings of deep sadness too but I just try and hope that mum somehow knew that I did what I did out of the love I had for her and that in time I can come to terms with the loss.

 

[Julesey]

Hello Josiejo,
I lost my wonderful Mum last February at the age of 95 - she had Alzheimer's Disease for fourteen years and lived with us for almost ten of those before having to go into a care home owing to persistent night time falls.
Following her death, I experienced all of the emotions you so eloquently wrote about and felt completely 'lost and alone' despite having a wonderful husband and family close by. I didn't want to get up and face another day as I felt so empty.
However, I can reassure you that these feelings WILL pass. Please just take one day at a time and be very kind and gentle to yourself.
I am happy to report that fourteen months on, my husband and I have just returned from the trip of a lifetime to South America - including fulfilling one of my lifetime's ambitions to walk part of the Inca Trail to Machu Picchu. It was truly amazing and I thought of Mum whilst there, knowing that she would be so delighted for us both. I am certain that slowly you will start to feel better and be able to embrace new experiences for yourself - knowing that you did the very best for your Mum at the time. Good Luck for the future and with my love Julesey x