Mum died wth alzheimers and filled with regret

(16 Posts)
mylittlemonkey Sun 13-May-12 06:34:02

My mum died just over a week ago. She'd had alzheimers for a very long time and she was in the very late stages when she died. Whilst she was alive I think I found it very difficult to handle seeing her deteriorate and also I did not get on with my dad at all and so these combined put me off going hom to see her esp in the early stages. I have 3 sisters and a brother and the youngest lived at home until about 3 years ago so she did have people there but I now feel totally devastated that I did not spend more time with my mum when she was well. We did have an amazing relationship when I was younger and she was the most loviest, kind, generous mum I could have ever wished for. Why did I not o ome more often? I was a uni during those years and having fun was more important. She would have loved me to come and take her out to places or just sit in and watch tv with her and in those early stages when there was she was still there I should have been these all the time and getting the best out of her and making her happy like she made me when we were young and having a relationship with her. I cannot even remember the last proper conversation we had or the last time we laughed together. My beautiful mum and I abandoned her when she needed me he most as I know she was scared of what was happening and my dad was not at all supportive Until the later years as I think he dealt with it very badly as well. I should have been there for her instead of being so selfish and haing fun with friends at uni.

I feel completely consumed with grief and regret and have not been able to stop crying for the last two days nor sleep or eat. My DH does not know what to do wth me I don't think and I am struggling to find the energy to look after our DS who is only 2. I have spoken to my sisters and they all say the same that mum would not have wanted me to feel like this and would have wanted me to have fun at uni but all I can think of is how much I wish I could turn he clock back and change things or have one last conversation with her or just tell her about my life and ask her about hers. I did start to visit home twice a week again after I realised how bad she was getting and I used to take her swimming until she could not swim anymore but even at this stage whilst we had bits of conversation it was not the same. How long will this feeling of regret stay with me as its killing me?

OP’s posts: |
milk Sun 13-May-12 08:32:59

I truly believe your mum would have preferred you to have a good time at uni rather than being a hermit at home. No one knows the future, so neither of you could have known when your mum was going to get worse.

If I, God forbid, develop alzheimers, I'd tell my kids to live their lives and not get bogged down with my illness.

Did your mum get to see you get married? I bet that must have given her loads of joy, and you could have only gotten married if you had socialised.

You will feel better over time!

mylittlemonkey Sun 13-May-12 08:59:58

Unfortunately she was too ill by the time I met my husband and got married so whilst she me him she was too gone by then to understand who he was. She did come to my wedding of course but she screamed most of the way through the service and my sisters had to take turns in sitting with her in a bedroom upstairs in the hotel at the reception as she just continued screaming. I think all the people and noise scared her. She also never got to see my son although I would sit him on her knee and try and put her arms around him but she was totally gone by then. I hope that on some level she knew how happy I was as I think towards the end she did worry about me as I did not meet my husband until I was nearly 30.

Thank you for replying and I know you are right that she would have wanted me to have fun at uni I just wish I had created more memories with my mum to remember her by and to remember my time with her and the person she was rather than just a mother who looked after me when I was younger. At the funeral the vicar and other family remembered lots of things about her before she had children and it really made me think how much we could have shared together if she had not got I'll and all the things we would have enjoyed together. We were all robbed.

OP’s posts: |
shesparkles Sun 13-May-12 09:08:44

My mum died 2 years ago to alzheimers. I've been through every feeling you're describing. This is going to sound really trite but you're still red raw following your mum going, and given time. I promise you, these relatively recent thoughts do recede and other memories do come forward. It's only recently I've been able to think of mum pre-alz, and memories of those good times are surfacing.
Of course you feel robbed, I feel exactly the same (mum diagnosed at 57) I feel the same and i don't think that will ever change.
Please pm me if you want to offload, I know how you feel.
Go easy on yourself x

jamaisjedors Sun 13-May-12 09:19:15

I'm so sorry you feel like this. My dad has Alzheimer's, he is "only" 65 and has had it for over 5 years.

He is still reasonably functioning but already I am eaten up by the guilt of finding it hard to talk to him and deal with him and wanting to get on with my own life.

I know that when he dies (a long way off I think, he is still physically very well), all of this will come out as it is for you.

mylittlemonkey Sun 13-May-12 13:21:55

Thank you do much for your messages. Reading them has really helped. I always thought my mum was diagnosed quite early but both your parents seem to have been diagnosed early as well. It's soooooo unfair that they and we have been robbed of some of the best years of their and our life and their grandchildren.

Jamais - does your father have any other help than you to care for him? It is very difficult and you do start to forget the person they were and just think of them as an issue in your life that needs to be dealt with. I hope you have looked into assistance you can get to care for him as this really helped and they are places like day care centres and home help even at this stage that can make it much easier for you to get on with your own life which you MUST do and know that he also has some support. It took years to get a good care package in place for my mum and it was a constant battle with care workers etc but once we did things really improved and I found myself worrying a lot less about whether she was ok.

Shesparkles - thank you. I will pm you.

OP’s posts: |
t875 Sun 13-May-12 15:51:12

Just wanted to say feel for you, I lost my mum a month ago from a severe stroke and it still kills. This weekend has been very hard and I haven't stopped crying.

These Are parts of grief process as I also have gone back and forth still am..could there have been anything we could have done, how did we not see she was I'll..if she was...So hard, basically she went to bed and didn't wake up the next day. :-( I wish I saw her more that week and. Have felt guilt with that, but I wasn't

I also am finding it hard to carry on with everyday things, plus I have a tween daughter who is being very challenging. I just do what I have to do when I get the energy.

I also have the flip side of the coin when I also find strength from her I believe and feel she is around me. And I keep on her memories and special touches so she lives on with us all.

It's very hard and you go with the different tide of grief, definitely talk and I find having a good cry helps a little.
My Thoughts are with you x

peanutbutterandbanana Sun 13-May-12 16:08:17

Mylittlemonkey - death usually brngs regret so your feelings are normal. And you are still so raw, only a week into your grief. My mum has dementia and I often cry because I feel I have already lost her and yet when she dies it is going to be horrendous. Mums are special people.

Please go and talk to your doctor as she can recommend bereavement counselling. You may find that helps. I nearly went mad with grief when my dad died six years ago and I had counselling which was invaluable. And perhaps also call the Alzheimer's Society and see if they can help - dementia affects the whole family. My Mum's psychiatrist told me that it devastates the family whilst leaving the sufferer almost untouched in that they are not in pain.

Please try and focus on the positive things about your relationship with your mum and not to have regrets because you cannot change what has already happened but you can change the focus of your thoughts Go give your little chap a hug - he needs his mum as much as you need yours.

But please get some bereavement counselling - it really works.

Big hug xxx

jamaisjedors Sun 13-May-12 17:48:00

Thanks for YOUR message mylittlemonkey. Will be thinking of you.

My mum looks after my dad, she has some relief once a week with a carer who comes round but because he can be pretty lucid sometimes he struggles with this and doesn't understand what this person is doing here. He still thinks he's fine and yet can't get dressed in the mornings or into his pjs at night.

I live in another country so most of the support I can offer is emotional - I know where you are coming from with the guilt - I feel so selfish being overseas and having a "normal" life while my mum has to deal with things day to day.

Also we always had a complicated relationship and his personality is quite aggressive and critical and so I find it hard to be patient with him.

Please do try to find someone to talk to about this, you mustn't let it eat into you - guilt is a horrible horrible insiduous emotion which gnaws away at you. Your mum would have been happy that you did have a good experience at university, but it's hard to make yourself believe that.

Interesting to hear about other early-onset diagnosis/cases. Dad's short term memory loss started almost 10 years ago and has gradually turned into what they call Alzheimer's. For a long while it was just constantly forgetting things and getting lots etc. but now it's much more hard-going...

mylittlemonkey Sun 13-May-12 23:43:06

Thanks for your messages it really does help reading them. It's such a cruel disease and everyone gets so hurt in so many ways. My sisters and I have said so many times that we will make it clear to our children that if we ever got dementia then we would not want our children to bear the burden of looking after us nor our DHs and that we would want to be put in a home as it really has been such a difficult time with my mum. I do think my dad left it later than he should have to get help though and we were all so unprepared but it did not help that my dad just refused to believe how bad she was getting and fought us every step of the way to get care in place for her.

Jamais - there are a number of groups that your mum get in contact with that can help with benefits she can claim to assist with help with your dad both financially and with actually support. I would definitely check out your local day care centre as the one my mum went to was really nice and it meant my dad had two days a week as a break. Whilst she may feel your dad does not need these things now it is well worth discussing options so your mum is does not start worrying how she will cope if things get worse and i am afarid they will get worse but the better prepared you and your mum are to cope the easier it wil be for her. There is Also a lot of local societies which do social events for Carers to attend and meet others in the same boat. We discovered a lot from other Carers about options available to us to help and just generally to talk to others dealing with the same problems.

I completely understand your guilt at having a normal life although I am sure you worry about your mum and so it is never really normal. I beat myself up for ages about not being there all the time but you have to say to yourself that you will do what you can and the emotional support you give your mum will be invaluable to her. You must not let the disease affect your life and your family as well. By helping your mum look into options for future care and support for her as well as your dad that will help a great deal. I would just also be aware that Alzheimer's can make a person who has never been aggressive before become aggressive so if your dad was prone to being like that before you need to be weary of this and speak to your mum. Do you have other siblings near to your mum and does she have friends near by? Where did you move to out of interest? Do you have a good relationship with your mum?

Peanut - I have a doctors appt on Tuesday as finding it difficult to sleep and not managing to eat much so hopefully dr will be able to Give me something to help with the sleeping. I will also ask about the counselling as that does appeal to me and probably something I should have looked into a long time ago really. Have been desperately trying to remember good memories of my mum but it is not easy as I think I have buried any memories of my mum before the disease for so long as they were just to painful to remember and just as painful now. Things are coming back slowly though. I suppose it just takes time.

OP’s posts: |
BigBoobiedBertha Mon 14-May-12 14:56:39

mylittlemonkey - so sorry for your loss. I agree with the others that your mother wouldn't have wanted to have regrets. You did what you could at the time and I am sure your mother would understand that. She sounds like a lovely mum.

My father has Alzheimer's so although I can't imagine what you are going through now, I have some tiny idea of the disease and it is very unkind, perhaps more unkind to the family than to the sufferer who doesn't really know what is going on come the end. Please be kind to yourself.

Jamaisjedors - I don't have a very good relationship with my father either (he has always been aggressive and difficult too) but a good one with my mother. I don't have patience with him I should. I have come to think, that since I can't be of much practical help to my father that the best I can do it make sure my mother is OK which is what it sounds like you are doing. She is 10 years younger than my father and it feels like she is wasting her life watching my dad get worse. I agree with mylittlemonkey that there is help out there if you allow people to help (I know that is hard for some carers). My mother has 12 hours of respite care a week since my father was thrown out of the day centre (he was being bullied by a group of patients although he definitely didn't help himself by picking fights). She has also been given several weeks a respite care. She can do things around the house and have a few days away then and it something for her to look forward to. Make sure your mum has a social worker as they have proved to be very useful, also the Alzheimer nurse who is as much concerned with looking out for my mother as for my father.

Thinking of you mylittlemonkey and all of you who are having to deal with this horrible disease.

peanutbutterandbanana Mon 14-May-12 19:25:24

Lack of sleep is not helpful if you want to think straight! Do be careful with sleeping pills. I had to go on them recently and they made me feel awful. I ended up having a half pill and then cut down to a quarter and alternated with the ones you can buy off the shelf at the pharmacy but got pharmacist to recommend. In the end could not hack how awful I felt during the day and came off them. Also try Rescue Remedy. And also a cup of horlicks at night. One of these things may help.

But do check with pharmacist as herbal remedies do not go with some medications. So be careful.

If you can afford it try hypnotherapy - one session may help.

Memories: have you any photos from pre-dementia? They may help jog your memory.

You will come through this MLM but please look after yourself whilst you are hurting

Xx

mylittlemonkey Mon 14-May-12 22:43:46

Thanks all. Have spent some time with my sisters today and have been talking about my mum. They say the same that there is no point looking back and what could have been and my mum would not have wanted me to feel like this. We also discussed memories we all had from the past pre-dementia and whilst it was nice it was also really painful to remember how she used to be and all that we have missed in the last 15 years. I have a really lovely picture of my mum before she was ill and she looks so healthy, slim and happy I downloaded it to my phone but it makes Me really upset everytime I look at it. Nt sure I am ready to look at the photo albums just yet but definitely one day.

OP’s posts: |
feelingafailure Tue 15-May-12 10:15:18

i really feel for you.it is such a cruel illness.only comfort i can give you your mum wouldnt want u to be sad.its so painful for any one to see them like that. i know its only early days but in time u might be able to look back and remember the great times with your mum.. god bless xxx

peanutbutterandbanana Wed 16-May-12 21:41:11

The healthy, slim, happy mum in that photot is the real mum, the one who sang you lullabyes, who changed your nappy, who took you for walks in the park, who brushed your hair, who took you swimming, who baked cakes with you and cleared up the mess afterwards, who hugged you at the school gates, who wiped away the tears when a pet died, who laughed when you told her a joke (however unfunny) who watched cartoons with you, who told you that you are beautiful even when you felt very unlovely and who loved you unconditionally even when you were being a teenage monster. She has been inside that dementia shell all these years - I truly believe that. And now she is released again to be the person she always was.

Cry all those tears as they are important but find some time to smile at the better times. One day those happier memories will be the stronger ones and these painful ones will slip away.

Do look after yourself

Good luck xxx

jamaisjedors Sun 20-May-12 20:28:18

Hope you are ok.?

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