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Alzheimer's Disease & Dementia Message Board
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Old 09-15-2011, 08:38 PM   #1
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Unhappy Just need to let it out...

My Grandmother has been suffering with this disease for at least 9 years. I am the oldest granddaughter out of 22 grandchildren. I had the closest relationship with my grandmother, closer than any of the other grandchildren. What was amazing about how she was to me before the AD was that she never saw any of my flaws, she never judged me... she never didn't help me. She'd always slip me a 50$ or 100$ bill ( I had alot of difficulty growing up, and school was more important than jobs and money). She'd buy me anything I'd mention and now... as I watch what this disease does to her, I feel my heart just break, for her and for my grandfather who is forced to make difficult decisions. In the last month and a half she has stopped eating- she eats small, very small amounts. Than refuses to eat, gets nasty with us when we ask her to eat. We put her in a nursing home, that she was told is a hospital. Tonight she said the most hurtful fact... " I don't want to go home I want to stay here!" and my grandfather replied to her " you told me you never wanted to be in a nursing home..." it was heartbreaking, they've been married for 56 years and it was upsetting for me to here that. She didn't even want to come home to watch tv at her place with me like we did a a few weeks before all of this stuff happened. I just needed to know other people are experiencing this... how do you cope with it? I'm 29... my grandmother was the non judgemental person ever, and she always had a special place in her heart for me. I miss being able to talk to her like we did, I miss hearing her say my name as feeling like all my problems were gone. I say I love you to her, and she looks at me, blankly at times. That's what hurts the most... any help or suggestions so that I don't feel bad when I don't see her would be appreciated, so I don't take what she says personally... please?

Last edited by moderator2; 09-16-2011 at 05:12 AM.

 
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Old 09-16-2011, 02:29 AM   #2
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Re: Just need to let it out...

We hear you and we know what you are going through. Please know that your grandmother can not change who she is now and you have to change your expectations. She will go through many stages and the nastyness usually is just a phase as I experienced with my own mother. Your grandmother is who she is now. I assume she is suffering from some type of dementia. It is a cruel disease with no cure at this time. I am sure you will be getting many more post from people who are are have gone through this. This is a great support group and we are here to help anyway we can. Keep posting it helps to vent your feelings to a nonjudgemental forum. You can let it out here anytime.

Gail

 
Old 09-16-2011, 08:10 AM   #3
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Re: Just need to let it out...

Hi, I have to admire you that you are a good granddaughter and it is painful for you to see her like this.
You need to know that it is not her fault and she has no way to know that she is hurting you guys and her husband. She does not know what she is saying. You need to forget about why she said this or that. Her reasoning is not in the regular world anymore. She is in her own world now. If the nursing home makes her comfortable and she said she likes it, why not? My FIL likes his new home because he has new peers and pureed food which he loves. The home is able to nurture them for good.
We should not even tell the sick elders that it is hospital or nursing home. My FIL would be upset if he knows it is nursing home or hospital. We just told him it is a place for retirement. He is in stage 7 but can still talk and still say hi to us when we see him. Hospital is not dementia-friendly. A cold nursing home is not friendly either unless the caregivers know how to talk to the person with dementia and know how to treat them well. The caregivers have to be trained to understand that the elders with dementia cannot argue and cannot reason. You can only talk to them as adults with positive talk.

Your grandfather should not feel hurt when she said she does not want to go home and so on. Rather, you should be glad that the home is able to please her. It does not help to complain to her - this only makes her anxious.
Don't take it personal. It is her sickness. It is not easy to care for these elders and what you do at home may not be good for her. We tried to keep my FIL at home for 5 years after he got Alzheimer's diagnosis, and in the end, he just got too confused and anxious. This new residential home for memory impaired gave him more hope in life and they give him very good care. So you should make sure that the home will treat her right. Don't expect her to understand what you guys are going through. She is in her own world. Your family should try to talk to her in nice tones and don't be negative with her. She is at the point that if you complain to her or become negative with her, she would be very anxious and may require antipsychotic drug. She cannot help herself.
I understand you feel a big loss because she is not the old her anymore. Remember she is sick now so just bear with her.

Hugs,
Nina

Last edited by ninamarc; 09-16-2011 at 08:13 AM.

 
Old 09-16-2011, 08:29 AM   #4
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Re: Just need to let it out...

Chopkin... I hear you and want to first say what a wonderful granddaughter you are. I know that kind of special connection because my daughter has it with my Mom who also has Alzheimer's. My grandmother had Alzheimer's as well. So I can tell you that there are so very many others that are having the very same feelings you are having.

Your grandmother still loves you even if she can't say it or show it to you now. You know this in your heart. You still love your grandmother as well. No she can not do the things she used to do because this disease had taken that away from her. But you have a wealth of memories to hang onto. Now it is time for you to give back to your grandmother some of what she has given you. Rather than looking at it as taking something away from you... look at it as giving you an opportunity to return her love. Sit with her, tell her stories, and tell her how much you love her. She may not respond but she knows you love her. I firmly believe that.

As for wanting to stay where she is... please be grateful for that. May have a very difficult time adjusting to a care facility when they need it. If she is happy there then it is a blessing. Those with dementia do need routine, care, calm, and their needs attended. They need to feel safe and secure. If this is how she feels in the nursing home then please count your blessings. Instead of her going back "home"... go to her. Those with dementia have lost the ability to join us in our reality... so go join her. Sit and watch that old show with her on TV. Talk to her about the past. You might just get a little comment occasionally, a little flicker of lucidity, that lets you know grandmother is still there for you.

Try to dry your tears (I am sure there have been many), put away the anger (at the disease which I know is there), and try to enjoy the moments you have left with your grandmother. Spend this time creating good memories as well. Don't look back at what was or ahead to what will be.... stay in the moment with your grandmother and count the smiles and laughter you can get.

Love, deb

 
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Old 09-16-2011, 04:45 PM   #5
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Re: Just need to let it out...

I`m not religious---rather spiritually minded--but I love the prayer of St. Francis.I won`t quote the whole prayer but I`ll put in a part that has meaning for me:" Lord,grant me that I may seek rather to comfort than to be comforted---to understand,than to be understood---to love,than to be loved."
This is what it is like to live with someone with Alzheimer`s.I the caregiver,cannot expect love,understanding or comfort from the sufferer,instead,I must give it----sometimes it`s so hard because it`s so one-sided and you get tired of giving and not getting.But it is also a priviledge--to look after a person that has been so important in your life.One day,one moment at a time,

 
Old 09-22-2011, 09:05 PM   #6
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Re: Just need to let it out...

I really appreciate the advice... Sorry I've not said it sooner. Thank you.

 
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