I am honored to present the first in a monthly series of guest blogs by Tracy Mobley, a wife, mother, author, and activist, who was diagnosed with Early Onset Alzheimer's Disease at the age of 38. Please log onto the home page - www.thealzheimerspouse.com, and read Tracy's blog.
Welcome Tracy, I loved your blog, but then I've loved everything you've ever written in the three years I've known you. I've seen the denial and the rejection from DH's family. I'm not sure theirs is denial or just hiding from it. Their mother died from AD so it's not as though they haven't seen it before. I really don't think some of DH's sibling have accepted even now that Mother really had AD. I always said that my siblings were more accepting and ready to step in and help me. I could see the hurt in DH's eyes that his brothers or sister didn't come to see him. The last year he lived, he would say he only had one brother. He had forgotten the other three. That was their loss. For the last four years, we only say DH's sibs once a year at the family Christmas party. Not even a phone call in between. The best example of denial came the Christmas before he died. His brother called and invited us to the family party and I explained that DH was in respite for 5 days through hospice and we couldn't come. He then said I could come, but when I told him DH would be home by the time of the party. He then said we could come for a little while. It didn't seem to matter that at the time I was having to hire a handicap van to take him places. Cost was $80 for a 3 mile round trip to the NH for respite. Maybe now they are beginning to accept. First it was Mother then DH, now two more of his siblings have been diagnosed.
Glad you're here Tracy, I'll be looking forward to your next blog.
Tracy I am so sorry for all your hurt. I have been reading your posts for quite a while and your insight should help us all in caring for our loved ones.
I don't have the problem of family denial because there isn't anyone around us to do or say anything. DH's sister is in a ALF in Ohio because of Alz. My only relatives are in Scotland and England and they know DH has Alz and don't deny it. I guess I am lucky in that I don't have to put with relatives who can't see what is happening. I am sorry for those who have to go through the pain of this.
Tracy, welcome and thank you for sharing your perspectives with us - it is very helpful. A few weeks ago I asked "Where are friends and family" on this message board. DH has 2 living brothers (one passed away in Oct from Alz) and neither of them, nor their children even call to speak with him and find out how he is. I'm not sure if they're in denial or just afraid. I know my husband feels abandoned by them, particularly since he was VERY close to the one who live 1.5 hours away. I am frustrated because dh needs to know that he is cared for by HIS family, not just me. In a fit of anger, I called his brother a bad name and next thing I knew dh said "I agree, he is an _ _ _ _ _ _ _." I think he is very upset about the situatiion.
Thank you Joan and thank you Tracy for that blog. My dh has never said a word about how he feels about his family that is still in denial. He is not very talkative these days and can't express his ideas as well as Tracy. I am mad as H...... at his family. I also tried to educate them to no avail. It makes me sad to think that my dh may be hurting because of their stubborn denial.
Thank you for sharing your feelings with us. I agree with Joan that it will help us understand our spouses better. My dh's only brother was in denial until he spent a week with us. Hellooooo - the light bulb went on! "Why can't he remember what I said 2 minutes ago?" "What is the matter with him - how can he not remember where the dishes are?" "Why can't he be reasoned with?" Because he has ALZHEIMER'S DISEASE!!!
You are a very brave woman Tracy - to be willing to put your emotions out there for all of us to benefit from.
I have been lurking here for months. It's hard for me to write but I had to respond to Tracy's blog. It could have been written by my dh. Thank you thank you thank you for writing it. I read it to him. It made him feel better that he isn't the only one with Alzheimer's Disease who feels hurt and betrayed by his so-called family.
Maylyn117, welcome to the site. If you've been reading you already know what a good place you've come to. Feel free to tell us more about yourself and your dh as soon as you're ready.
Tracy, I am so pleased to see a blog here through the eyes of the person who has dementia. Thank you so much Joan for having Tracy. As I read the blog, Tracy, it felt as though I was reading my own experience. I have only one person who is denial, my spouse. I am one of those who can not express my feelings because of my dementia and I have always appreciated your writings, Tracy. I am looking forward to reading more. I have been coming here to this site for sometime now and appreciate it very much. A thank you to all of the care persons here for your heartfelt words and especially to Joan for a most informative site. I am also a caregiver, with dementia. I appreciate each and every one of you.
Dear Tracy, thank you for your contribution and insight from someone with dementia. Ralph and I met you in Oklahoma a few years ago with the DASNI group. What an inspiration you have been to me and were to Ralph. I remember your caring husband and dear sweet son. You have done so much for the awareness of dementia with your books, work with children and educating people. I am so sorry your family has not been supportive for you and your family. My heart goes out to you and your family. God bless you my dear. Darlene Clark
Tracy: Thank you for sharing your feelings and experiences with us. My DW is in a Geriatric/Psychiatric hospital for an 'evaluation'. They are trying new meds, etc., because the old stand bys aren't working. She might go from there to an ALF if they can't get her settled down since I can't take care of her any more.
Dear Tracy, Thank you for posting your diary of your experience. I don't know what it is with some families who, as in mine, rather expect support when they have a crisis but are not there when you do. My husband has had several health issues, from hip replacements to heart surgery to femoral bypass and the only real communication was a plant that arrived. Not a call, no thing really personal in terms of contact. Now my Sweetie has AD. The last time I saw my brother was in Oct and all he said was I see you have your hands full. And if it isn't family that is distant in this regard there are friends who also dismiss the concerns of AD and all the challenges by saying something like " well we all do this or forget that...." It makes me want to scream at them..."Wake up..this may fall in your lap one day..!" Your insight is more valuable than you can imagine and we thank you with all our hearts and wish you well.