Grief

[Emma-Rebecca]

Hi, I am new to this forum. I have read some of the threads with interest. And I feel a bit of a fraud because my situation is nothing compared with what some of you are facing. However I would appreciate some guidance. My Grandma passed away this July after living with Alzheimer's for over 15 years. I was 13 when she was first diagnosed. Before this she had been exhibiting the symptoms for some time, then they worsened suddenly. I felt bitter and angry because I felt that my Mum spent all her time and energy looking after my grandparents (classic teenager), then very guilty because I knew they needed her more than me. And I still feel incredibly guilty that I did not do more to support my Mum (some would no doubt say, rightly so). In recent years my Grandma was moved into a nursing home as she needed 24 hour care. She was doubly incontinent and could not swallow. Whilst this broke my heart when I allowed myself to think about it, for the most part I shut myself off from it. I thought I was 'being strong'. How wrong, but I guess it was my way of coping. I could pretend it wasn't happening. Since she died the lid has lifted and I am a mess. Guilt, loss, anger, grief, yearning - all describe my feelings at present. I can't talk to my Mum because I feel that it's my own fault, if I had got more involved I wouldn't be feeling like this. I can't move on. Basically she was a beautiful vibrant selfless woman. That this happened to her is pure cruelty. She bent over backwards to help make my childhood the happy, safe, joyful and contented one that it was. I did nothing in return.

 

[Sheila]

Dear Emma Rebecca, I was so sorry to see how you feel in your post. What you describe are all stages of the grieving process. Anger, grief, remorse, sorrow. I have read there are at least seven stages. By feeling these things, whether you can accept it or not, it proves how much you loved your Nan and the rest of your family too. You have nothing to feel bad about my love, you were only a kid, you could not possibly do any more than you did. So stop beating yourself up. Believe me, your Nan would have known how much she meant to you, by the little things, just the light in your eyes when she was there, it says it all. What you are feeling is the emptiness that goes with loss of a loved one. We feel we have not done all we should, that we could have somehow, anyhow, made things better, different, or less painfull. We have this almost self destruct force that encourages us to feel in some way to blame. Now listen here, YOU ARE NOT TO BLAME! We do the best we can, regardless of age, ability etc. What happened was out of your control. It is the one thing we all who are born will do, die. Please try to remember the good times you had with your Nan. Take heart from these memories and when you feel lost and need her, think of them, of you and her together, take her in your arms and give her a hug, she will always be there for you and it is because you had that special love that this is possible. When you feel able, you can also show your Nan how much you cared by being there to help your own Mum through this loss. I lost my Mum in July too, I feel just as you do, despite being older, I dare say your own Mum would find a hug a real bonus right now too. God Bless, thinking of you, much love, She. XX

 

[barraf]

Dear Emma-Rebecca

Welcome to TP.

Of course you feel all the emotions you listed and probably a lot more. It is a perfectly natural reaction to the death of a loved one.
You should try not to blame yourself for the way you responded to your Grandma's illness, you were after all only a child when she started and having got into a pattern you would see no reason to break out.

I am sure your Grandma would not apportion any blame. The only comment I would make is that I think you should try to talk to your mum. If you were to tell her what you have told us on TP I am sure she would respond in a positive manner, which might make the grieving process a little easier for both of you. It is of course a purely personal decision.

Hope this is of some help.

Barraf

 

[Chesca]

Hello, Emma-Rebecca, I'm Chesca, an old trout who has cared for her Mum, now in a nursing home, with AD, for more years than she cares to remember. And I could weep (and often do, still). Like the others, I think you should talk to your Mum. Tell her how you are feeling and if you find that difficult to instigate, show her what you have written here. Keep the lines of communication open.

You must get it into your head that none of it is anybody's fault. None of it!

AD is the cruellest illness, not least for the knock-on effect to the quality of life for loved ones. As a carer, you spend the best part of your life ducking and diving, trying to please everybody and failing miserably because you are expected to be a physco geriatrican 24/7 365. Insidiously it becomes a way of life, but never intentionally to exclude your loved ones. It is the pits. How you are feeling now, will perhaps enable you to understand how your Mum felt some years ago. She is very probably going through very much the same as you are, even now. You need to talk. Cry together. Share some of the grief. If you don't, it will fester, turn into unspoken resentment and you're are all too loving for the consequences of that, from what you say.

Don't allow yourself to feel guilty about something you were far too young to understand. Would it be any consolation to know that everybody who looks after an AD sufferer lives in a permanent state of guilt, sadness, regret. Sometimes the mind plays the trick of allowing you to shut down when the pain may be just too much - I do it too, even now. I can only desribe it as a form of numbness - I'm not conscious of making the decision, it happens. I cope in the best way for me, not according to the opinion or expectation of others.

I think I've said this a few times before: if you can, take the stick you use to beat yourself and break it, you don't deserve the punishment, none of you do. You are obviously a loving family and don't underestimate the power of that to overcome your terrible grief and sadness. Replace the 'stick' with that love and the kinder memories of your Nan, I'm sure there are very many. And use this site if it helps, it's helped me through much of those feelings you are now experiencing.

Above all, be gentle with yourself, you are very tender and vulnerable.

Thinking of you, take care
Chesca

p.s. Actually, I'm not THAT old; that would be an insult to your Mum - I've a daughter your age!!

 

[Emma-Rebecca]

Dear Sheila, Barraf and Chesca,

Thank you so much for your replies to my post.
I really appreciate the support you have all shown me. You have given me an insight into a little of what my Mum must have been/is going through. We are a loving family, but unfortunately, a bit embarrassed about showing emotion. I feel we have to overcome this. My Mum told me that when Grandma died, she felt relieved. Mainly because she knew she wasn't suffering any more. She told me that she actually started grieving for her mother about seven years ago, when the illness really took a hold. I found this hard to understand at first but now it makes better sense. Grandma was there physically but it was as if her spirit had gone. I did the opposite and developed a mental block which came down only when she died. I always seem to have a reaction after the event! I admire you all so very much for the way you are dealing with your individual circumstances. It's good to know there are people who really understand what I am feeling. I am very lucky in that I have great friends and a wonderful partner, but they have told me that they find it hard to comprehend how I feel, as they have not encountered this illness personally.

Thank you again. I hope to be able to give some of this support back whenever needed.

Love Emma

 

[Sheila]

Dear Emma, yes, it is often a case of putting it on hold etc. Your Mum will feel as I did, glad your Nan is no longer suffering. But don't think for a minute that she is not grieving, she has been grieving ever since this illness began. Now, with the inevitable having occured, you are all in the same boat again so to speak. As a really loving gesture to your Nan, now is the time to heal any rifts, be open to each other about your feelings and move on with strength and love to cope with the future. This is what your Nan would want. Love She. XX

 

[JulianneGreen]

Hi Emma,

I dont know if it helps, but I have experience of losing a loved one and fealing guilt over the way i didnt do enough to help.

My mother has alzimers, I am an only child and have 4 children. 2 years ago i took it upon myself to take in my god father who had suffered manic depression and had no family to care for him. Last year he died at home here, and it took me ages to let go of the guilt that i didnt do enough for him and still suffer slightly to this day. He died of pneumonia. He always made such a lot of the slightest ailment and that particular day I was busy rushing around after my kids and mum and didnt check on him (he was in his room) I had called the doctor and went to take him a cup of tea and found him dead. Its was awful, and i felt like i hadnt done enough. Him living with me was a huge strain. I wasnt so patient at times, and could have done far more to make his life better.I am only young, 25, and couldnt cope with the pain i felt at his down fall. He was close to me as a kid, like a second father, and I found it hard to deal with the tables turning with him needing the caring at a time when i needed support to. Just like you did growing up needing your mum when she was needed with by your nan.

Its a horrable fealing, one hard to let go of. But you have to. There is nothing to do but let go and move on in the way you can best with the experiences you have been though. You were young when it all started, your actions and fealings were understandable, and they still would have been had you been older. Its painful, and its easy to hide from pain if there is no reason you are forced to deal with it. I think that is why so many of the carers here find themselves dealing with things more or less alone. Once a person takes on the responsibilty of carer the role is filled and other family and friends can shy away from the front line because they can. It doesnt always mean they care any less. And in your case i can see how much you care. Its eating away at you cause you care so much. And it mustnt be alowed to eat away anymore, or youll lose out on making a positive difference in life with your mum, family and friends through the wisdom this has given you. You couldnt have stopped your nan dying, or your mum struggling as all carers do. But you can give the care you wish you could have given to your mum now.

Take care x

 

[Sheila]

Dear Julianne, you did the best you could, how you coped I have no idea, and you have so much still to cope with. There are not many who could have done all you did for your uncle in the circumstances you already found yourself in. You said you thought of him like a father, well we all have family tiffs and even if you were a bit short with him at times, he would have known and felt your love I am sure, thats what families are all about. You were there, if you had not been, he may well have died completely alone. As it was, he was a part of your family. He knew this and could hear your little family around him which would have been a comfort. It must have been quite quick because as you say, you had checked on him, called the doctor and gone to get him a cup of tea. How could you do more, wonderful you are, superwoman you ain't, thats just comic book fiction. You did all you could. It is lovely that you still have such a caring heart that you can reach out to another in pain and grief as you have in your post to Emma. Love She. XX

 

[Emma-Rebecca]

Dear Julianne

Thank you so much for your response to my post. I really admire you for the way you have coped, what with four children and the responsibility of your god father on top of that. You were an absolute saint to have taken him in. And you're totally right of course, we cannot blame ourselves for these terrible things that happen. I have just started to receive counselling for my grief (and the deep depression which has resulted), and I am fast learning that you do the best you can at the time with the resources you've got. We're all human, at the end of the day. I'm slowly learning to let go, but it's going to take me a long time. I think it'll be worth it though.

Best of luck yourself Julianne. I hope you're Mum is ok.

Love Emma
x

 

[gladys]

Dear Emma,

I really can't add anymore to the valuable advice already given, other than to agree that it is clear to me that you have a heart full of love. For if you did not, you would be unable to feel the grief.

And know that others have gone before you and have made it thru. You will too. Just hang on tight, to the very last minute, and know that "this too shall pass". Your heavy heart will soon be healed, it will just hurt like hell until that time comes, but it will.

I agree, the peeps here are truly wonderful. May God bless us all.

Love,
Gladys

 

[Emma-Rebecca]

Thanks Gladys - for your kind words. I hope that you and your Mum have a peaceful Christmas and new year.

Love Emma
xx