Hi everyone… I’ve been here before
The last time I visited this site, I was ranting about taking care of my 94 year old grams who is suffering from dementia…
I took care of her for the past 5 years and it was really like a living hell for me.
I love my grandmother but seeing her transform from one person to a complete stranger was really traumatic for me. her behavior was really unpredictable, its like now she's nice and sweet then the next 10 minutes its like your talking to a different person. most of the time she doesn't sleep, feels agitated and see strange stuff, like a man on the window, dogs and cats everywhere in the room and to tell you the truth it really drive me nuts..
that time, I really felt that its unfair for me to take care of her 24 hours a day, seven days a week. Yeah, I grew up with her and I love her very much – but I’m young and have a life too y’know. why should I sacrifice my whole waking life to take care of her? Life is not fair… her children left me with a responsibility that is really hard to bear.
But now, I feel sad. She died 3 weeks ago and I miss her pretty bad. It’s like my world revolved around her and now, I just don’t know where to start. I should be happy right? Now I have all the time for my self. But why is it that I feel so empty? I miss her.
you have been through a terrible ordeal, I dont think you should expect to feel "happy". I think that it takes a long time to realise that the death of our loved ones is coming, but that can never prepare you for the feeling of devastation and grief when it happens. Anyone that can take on the burden of caregiver for a dementia patient rarely reaches the end being or feeling like the same person they were, and from my experience, the acknowlegment of losing anyone haunts you every day.
My father died fairly suddenly from a brain tumour (11 days from diagnosis to death) and I was swamped with grief. I had insomnia, drinking problems and depression for at least 2 years....for at least 1 year I would wake up in tears (if I managed to fall asleep)at least twice a night. I no longer could enjoy anything and became very antisocial..the few times I tried to go "out" I ended up hating where I was and just wanting to go home to bed. How could these people around me be laughing and having fun when my father was DEAD? It was my first close loss (apart from friends)
and now my mum is on the AD path, I am visiting lock down units and seeing what her future will be....I am at the point where I am walking around shopping centres and seeing daughters with their mums having lunch etc...and inside I am struggling not to cry....I feel pure anger at the disease, and am grieving for my mum who is still alive. I dont think you should expect to feel happy for some time. But you will eventually be at peace. there is nothing wrong with feeling relieved when an AD sufferer has died. Relief for you and your loved one. But happyness you may have to wait some time for.
Live each day the best you can
I am so sorry to hear of your loss. It isn't easy. Even if you were frustrated and harassed with her care, you really loved your grandma and miss her - the real her. Although mourning begins while an AD patient is still alive, as we grieve for the person she used to be, the grieving and mourning will take its course. My wish for you is that you remember her more and more as she was before this disease took hold of her, and gradually forget the irrational and the ***arre.
It is normal for you to feel sad. It will take time . Meanwhile you will gradually be able to feel free - to tell yourself, 'now I can go there, do that" and get up and do things you were unable to do before.
I wish for God's blessing on you as you go thorugh this adjustment. I hope you are surrounded by friends and family who offer you their love.
I remember when you first posted about your grandma. As I was reading your post today, I was thinking back to when my mom's mom and my dad's dad were in the later stages of this awful disease. Having lost both of them to AD, I can understand why you feel so conflicted on how you think you should feel. As a loving granddaughter (I was not the full time caregiver) in the midst of the worst part of this disease, first with my grandma and then my grandpa, I thought I would be relieved when my grandparents passed. It was the end of their suffering and I wouldn't have to worry about them anymore. Not so.
In 1984, I got the news that my grandmother was dying. I was 600 miles from her at the time. In my mind, I told her it was ok for her to go. I thought my heart felt the same way. After all, grandma had left us long before she passed on. Just before I left to go to her, my aunt called and said she was gone. My heart sank like the Titanic. The feeling of missing her overwhelmed me. It had never occured to me that I would miss her so much. Several months later, I realized that with grandma's passing, I not only lost HER, I also lost HOPE that a miracle would happen and I would have my "old" grandma back before the AD would take her. When she was alive, I could look at her and see that even though she's not the same grandma, her hands were the ones that as a child touched my face every night when I was at her house before I went to sleep. Her arms were the arms that hugged me when I fell down and scraped my knees. Her words were the words that comforted me when I was feeling down. She was my grandma and she loved me for who I was just as I loved her.
I grieved for a long time after my grandma's passing. I still miss her very much. But I don't think of her with AD much anymore. I have nothing but happy and fond memories of her. You'll have that again too.
Give yourself time and permission to grieve. Your grandma was obviously a very special person in your life. If she weren't, you wouldn't haven't sacrificed what you did to take care of her.
why should I sacrifice my whole waking life to take care of her? Life is not fair… her children left me with a responsibility that is really hard to bear.
I hope you don't mind me saying this but from that sentence, it sounds to me that your resentment wasn't with your grandma but with her children. No need to feel bad about that. You were the responsible adult who stepped up and did what needed to be done. The rest of them should be ashamed of how they shunned responsibility.
Know that you are not alone in this and that others understand. Feel free to visit us here if you wish and there is also the grief board. It helps to get your feelings out in the open even if you're not sure how you feel.
Thanks guyzz for your kind words. Somehow it eases my pain to know that there are people who went through the same experience as mine.
Zonk – I understand where your coming from, like you there came a point where I got mad and loss appreciation of the good things around me. Sometimes I even got mad at God for giving this disease to my grandmother. I became anti social too, coz above anything else I need to prioritize my grams and her needs. My needs were the last from my list. My life before was all about her. Some relative’s keep on telling me that now I’m free and can do whatever it is that I want to do. They said that I should go and find my destiny. But what the heck…. Easier said than done… they have no idea what I’m going through at this moment because they were not there when things are really tough for me. I still need to pick up the pieces and find my self. I know its not going to be easy. I don’t even know where and how to start.
Martha – thanks Martha, you’re right. Guess I should just remember her (the real her) before this disease took hold of her. I’m trying but it’s really hard. Since her death, I’ve been having this series of nightmares. The strange thing is, in my dreams it never crossed my mind that she’s no longer with me. I will always see her having tantrums, agitated, loss and sometimes in her violent self. Then I’ll wake up feeling upset and mad for making me feel like hell.
When she was still alive, I hate it every time she has sleepless nights (that means sleepless nights for me too) because I still need to go to school the next day even with just 2 hours of sleep or sometimes without really sleeping at all. Then I’ll come back from school and find her carer getting beat up because she “wants to go home” to this house I don’t even know or what house she’s talking about.
Now, its like I dream the same thing over and over again. I know she’s gone but her AD tendencies still haunts me in my sleep. Worse is, I hate the feeling of hating her whenever i woke up.
I’m not a perfect caregiver you know. I’m not a perfect person. I’m also capable of feeling tired, hating God, hating my self and hating her for all those years that the disease made my life a living hell. Before, I wish that God takes her for her sake and mine. But now that she’s gone I feel really sad and miss her.
LuvMyLilDoggie – thanks for sharing your experience. You are right in saying that my resentment is with the other family members and not with my grandmother. I hated the fact that I’m here and they are somewhere else having the time of their life. Also, I don’t have a choice but to be an adult and just be strong for my self and grams even though her disease and violent tendencies really terrifies me.
Last edited by grlw/noname; 11-16-2006 at 11:11 PM.
A year after I left my Mom in my brother's care, and 9 months after she fell and wound up in a NH, I started going to therapy for my problems. It has been a tremendous help. I was still blaming myself for Mom's fall and subsequent confinement to a nursing home .
I found out that none of that was my fault in any way, and it is normal for me to think it is! My therapist calmed my fears and helped me to believe in Mom's wonderful life instead of being angry at the way it is ending. My nightmares have just about ended.
I very highly recommend therapy for anyone who has been a caregiver, and is now at loose ends without that 24/7 duty.
One of her recommendations was that I find volunteer work (I am retired) to keep on doing things for others, which is a source of happiness for me. I began teaching a sunday school class at my church which is amazing fun and brings me positive feelings. I am also supporting a charity I had not known of before.
Even though I am not a caregiver now, I still take part in this Message Board and try to share what I have learned through my 5 year caregiving experience. Those are ways to recover, and go on with your own life.
Time also makes all painful episodes fade in memory. Good luck and God bless you.
oh martha... I'm really depressed right now. last night i thought that maybe it is better for me go through a therapy to deal with everything plus i really want this nightmares to go away. last night, i dreamt of her again but this time it was not something bad. she was on a hospital bed and upon seeing her, i told her ---- gramss i knew it.. everything was just a dream. your still here with me. then i hug and kiss her. she smile at me. then i woke up and realized that everything was just a dream. grams is not with me and i started feeling upset again.
i wish i could just skip this whole grieving process thing and just go on with my life. this is driving me nuts, i know grams wouldn't want to see me as sad as this.
I finally have some time to sit and write .. forgive my tardiness ...
When I was a carer for my in-laws .. I hated it. Simple fact .. I hated it.
I hated the fact that my FIL who had a wicked sense of humour and was always good for an enthusiastic debate, was struck with End Stage Lung Disease and turned into a demanding pushy nuisance .. not that he WAS a nuisance in that way, but it was his continual demands that exhausted me. Yeah .. the man was sick ... breathing in itself was a new experience in pain let alone trying to live with a wife who was increasingly becoming "odd".
I hated the fact that my MIL, a gentle, loving, clever, wise and wonderful woman was struck by a disease that robbed her of speech, of logic, of wisdom and activities of daily living so that she became a screaming, punching hitting kicking, spitting, incontinence banshee that believed she was PERFECTLY FINE THANKYOU VERY MUCH and who did I think I was stopping her driving, ensuring she ate well, kept her as dry as she would let me, kept her hygiene up as much as possible .....
I hated it.
I loved them, but I hated the situation they had put me in. I hated the fact that it almost broke up my marriage, destroyed my son in way's you couldn't imagine .......
Yet it also enthused me to further my studies and change my career.
I have guilt, I will always have guilt. I have grief, but I have pleasure as well. My FIL died almost 1 year ago, and as much as I know he was frightened to go (remember, he was cognitively FINE) it was finally his time and he was FINALLY at rest .. !!! No pain, no frustrations .. peace. I was pleased with his death, although I missed him terribly at the same time AND suffered guilt as well (perhaps if I had stayed he would still be alive, perhaps he died because I left .... all those doubts, but perhaps he died because everything was taken care of .. ?? *shrug**) but I am at peace WITH MYSELF because I know I did everything I could, more than others at times, and his time was up.
I am learning .. when your time is up, your time is up and it's something we have to accept. We are born, we live, and we pass on .. it's inevitable, sad, but inevitable.
My MIL isn't that far from joining her husband (we believe from reports) and although it will be sad to have her go, I will rejoice that this HORRID disease will no longer control her and she is finally with her loved ones. I am, after one year away, focussing on the fun times we had instead of the horrid ones.
Your grief will take time .. as it does with anybody. My own father died 2.5 years ago, and each time I think of it, I howl .... its not everyday anymore, but even now, I can feel tears welling. He was as fit as a fiddle, but at 89.5 his time was up ... Everybody deals with their grief in different ways. My FIL and MIL did and will die before their time IF THEY HAD HAVE BEEN HEALTHY .. my Dad, who as I said, was fit as a fiddle died when he was meant to (not 100 liked he hoped). I can deal with my grief over my in laws much better than I deal with my grief over my dad.
But that's what makes us unique .. we are all special and we are all different, and we are made up of lots of bits an pieces that we have experienced in our lifetime PLUS genetics ..
I do recommend perhaps some counselling .. there are specialists in grief counselling, and to let yourself go with the flow .. grief MUST be expressed, but only YOU know how you can (eg: My girlfriend of 33 had her father pass away when we here only 27, she never expressed her tears publicly (much to lots of peoples concern) but little did we know she cried and cried when in the shower .. or on the toilet, she's a private girl .. me? I wear my heart on my sleeve LOL .. EVERYBODY knew I was miserable).
Sorry ... I have waffled ... hope your feeling more confident to see some outside help ..
hi everyone .. its been a while... i'm glad to be back and say thank you to all of you who were there at one of the toughest days of my life.. thanks angel_bear, matha, zonk and luvmylildoggie.. your messages meant a lot and thank you so much for being an angel for me.
I've already moved on. I still think of grams and though i don't see her i can feel that sometimes she checks on me to see if i am okay. My experience with her taught me a lot of things and made me a strong person. I know i'll have a good future ahead of me. and guess what.... I'm done with my studies. I already have a graduate degree in management and now preparing to work in a great company... i can't wait for other good things to come. i know grams will always be with me watching me while she enjoys her cup of tea in heaven
just like you guys, i also want to share my experience and give help to carers who have had the same experience as i did. so expect me to pop once in a while oki ***i....
God bless you all!!!
Anne <my real name>
Last edited by grlw/noname; 01-31-2008 at 07:19 AM.