Alzheimer's Disease Support Group

Hello Everyone,

My life was turned upside down when my partner of 12 years was diagnosed with dementia last year. I at times feel alone and isolated. I take him to adult daycare when I work, but I care for him the rest of the time.

I am a busy nursing professor and my background makes the grim reality of the situation all too clear. I find myself thinking and asking myself if this will be the last holiday season I will be able to keep him at home. I have considered attending a local support group, but of course they schedule it at 7 p.m. in the evening making it absolutely impossible to attend due to having to leave him alone.

I never dreamed at 40 years of age that this would be my every day reality. I find myself wishing God would take him, rather him having to live through this awful disease progressing. This is the first time I have reached out for support for myself and I am so glad you are here.

Welcome, MW to our group. We are all carers and understand the enormity of the awful AD. I am glad you reached out to us and we will help in any way we can. We will support you and offer you our experience at the different stages of the disease. You have met the disease at a very young age and yes, it is difficult to attend any meetings at any time either because you are working or caring. That is a harsh reality. Here however we are available to you from home at your own time. The reality is that the disease could continue for a long time, though the younger they get it the quicker the deterioration - as a rule.

Others will contribute here as well.

Tony

Hi MW. Caregiving is so demanding that every caregiver I know needs support for themselves. We are glad you looked us up, and we'll certainly try to help. I had to work for three more years after my mom developed AD and it is indeed an exhausting schedule. After retirement the schedule was not so exhausting, but 24 hours a day on call certainly was! After eight years of caring for her I finally had to give up last month, and now my sister and her husband are caring for her.

It is cruel what AD does to quality of life...both for the sufferer and for the caregiver. My mom is 90 and I have thought for five years now that death would be preferable to this awful daily struggle she has, trying to cope with the increasing chaos of her mind and being afraid because she doesn't recognize us now and thinks she is living with strangers.

It would be wonderful if those support groups could provide care for those who have no alternative but to bring their patient with them. I suppose it would be expensive to hire enough people to care for a large group of AD patients, even for an hour or so, not to mention a facility where they would be safe.

Yes, isolation is one of the big problems for caregivers. You can check in here any time though, and soon someone will be on-line to answer you. Welcome to the group MW. ANW

Welcome to our group MW. I have never been able to attend a support group in person myself. This group has been really good for me because I can attend when ever "I" have the time and I can attend from the comfort of my own home. Feel free to join right in. We all need someone to talk to who understands how we feel and what we are going through.

LYW

Post edited by: lovingyoungwife, at: 11/22/2009 06:56 PM

Thank you so much. There are days when he does really well and others when it is really horrible. I always knew adult daycare was expensive, but I am really realizing this now. This combined with his insurance premium eats up the entirety of his social security. Mind you the program is worth every penny, but it certainly stretches our finances.

When I first arranged it, he was angry with me. He screamed at me and said he hated me, but he went one day and fell in love with the program. They spoil him rotten. He gets 2 very good meals a day, and at least I can work, but I find myself so worn out because work is my only respite time. I know this is only going to get worse and I am really scared.

Thanks so much Tony. I only hope I can be a great support to all of you too. This is certainly a tough journey.

Thank you so much. I was grasping at straws and I am beginning to feel like I have a bit of hope. I am taking him to Chicago for Thanksgiving. I often wonder if this will be the last time. I am going to enjoy every good secon I can in the midst of all this.

One other hint: with AD you should take only one day at a time. You cannot predict and you could worry yourself sick month after month about things that don't happen simply because the scene changes rapidly when you least expect it.

Tony