My dad was diagnosed 2 years ago. Since his diagnosis, my mother, who is typically compassionate and supportive has been anything but. I looked to this site to try to understand her perspective a bit better. I understand her anticipatory grief and mourning the life she was planning on living but I don't know how to help her get past this stage. I've suggested support groups, counseling etc. She's a sensitive/emotional person and I'm more matter of fact so I struggle to find the words that won't hurt her feelings or upset her. She is very short with my father, acts annoyed when she has to explain things to him or show him every morning where the cereal is. As a daughter it is very hard to watch. I know I can't understand what she is dealing with as his wife but I feel she is squandering these last months/years where he knows us and is still self functioning. She also does not seem to think about how this diagnosis and change has affected me. I feel as though I don't know either of my parents anymore because they have both changed so much. I miss my close relationship with both of my parents. One is changed for good but the other doesn't have to be. Any advice is appreciated.
BLT, what you are seeing in your moms attitude about the diagnosis is pretty common. we are in denial the first few years. mourning and grief are part of it and makes life a bit intolerant as well for the one thats living with the afflicted person. what may help your mom the most is get her to read this website, even if anonymous to start. she will find solace knowing there are so many of us in the same boat and dealing with the same feelings. resentment, anger and loss for what will never be... its ongoing and she will need the support from local groups and here is you can get her to read. it must be very difficult for you as well to witness but like you say unless you are a spouse, the devastation just cant be explained. best of luck. divvi
I don't know how a person is supposed to deal with knowing things are gradually going to get worse and there's no cure for it. My wife and I pretended we didn't have it for almost 2 years because she just couldn't do anything but block it out as best she could.
It's also very hard on the children as you know and you have every right to have your own feelings about what's happening to your parents because they're completely legitimate. It would be unfortunate in the long run though to resent that this disease has changed things.
BLT, I have been where you are now and now my DH has this disease. When my mom was coming down with this disease,and before we knew what was going on, I would be on the phone and hear my dad yell at her. It was stressful. I once told him not to talk to her like that..What he was trying to do was do it all for her. Dad was never a cook...he did his best to care for her and keep her out of trouble. Once we understood what was going on, we started to help our dad with our mom in any way we could.
I would urge you to show your mother this site and have her join us. This is a site for spouses of Alzheimer's Disease and other dementia forms. She will learn that what she is going through is not unusual at all..We have veterans here and some newcomers as well. She will feel supported here and she will gain good advice.
I go to our local Alzheimer's Assn support group which is a good one here. But it meets only once a month and that is not enough. However, you and your mother should contact your local Alzheimer's Association, find out what meetings there are in your area and attend. Also your local Alz Assn can help with finding help for your mother, such as day care facilities, or in home help if she needs it. You both need the support.
And in case no one has mentioned this to you or your mother, she needs to see an Elder Care Attorney NOW to get all affairs in order, trusts etc. This is a special attorney who should know all the in and outs of Medicaid, VA etc as there are very important things needing done to protect their assets. This cannot wait.
BLT--another way to help your Mom is to encourage her to arrange some in-home help--even one day a week right now. The help can start out being housekeeping chores to lighten her load, and ease into dong things for him-- get your Dad used to someone else in the house and occasonally helping him (make his sandwich for lunch; bring him a coffee, whatever). Then, when that becomes comfortable,have her use that time to leave--have her hair done, shop, meet with friends. Eventually, as time goes, the frequency of in-home visits can be expanded and the helper's role can included helping him with his showers, dressing, etc. They can both "grow into" havi ng these services. Shewill need the breaks away, and by getting him used to help from thers, there's less chance of serous difficulties ater if he shold refuse help except from her--who knows whe something migt happen that she wasn't available?
Unfortunately, with these diseases we need to plan and prepare ahead of time wherever possible,because our day-to-day stuff becomes more and more a crap shoot.
BLT - your mom is indeed in denial. We all experienced this. I was not the most patient person on the planet, and when my DH was first diagnosed, I tended to ignore the dx, and yes, I pointed out every single stupid thing he did and said. Then I found this site. Just to know there was actually someone else experiencing what I was...heck a lot of someones, was a blessing. Your mom will get there in time, and all the suggestions above are excellent. If you can get her to this site, she can maybe understand that she's not alone. Keep in mind how frightened she is right now. We all were. She's lucky to have such a caring, loving daughter. I am also blessed with a son who has been my rock and strength through out this roller coaster journey. Don't give up on her. My son never misses an opportunity to kick my butt if I need it LOL! And Miss *Carosi2....a crap shoot indeed! Best of luck, BLT! {{{HUGS}}}
You wrote, “One is changed for good but the other doesn't have to be.”
There is no possible way on earth your mother cannot be changed by your father’s disease. And the change did not happen for her the day your father was diagnosed. It began many years ahead of the diagnosis.
I can’t speak for your mother but I can tell you how I changed. I used to be a happy, gregarious, outgoing person who volunteered for many community causes. Now, I’ve had to quit all my volunteer activities. My ever present smile is long gone. We have no social life as a couple. I try to go out occasionally with friends but it’s hard to pretend to be happy- and I hate to be a drag on others. (The other night I saw a reflection of myself in a window and didn’t even recognize myself – I tried to smile to see if that would help, but my smile was forced and unnatural looking.)
I can’t begin to tell you how sad it is to lose your spouse to this disease, but still have him sitting right next to you. It may be years you’ve been dealing with it, but you forget and turn to him to share some news or get an opinion and you’re quickly reminded – oh, that’s right – he’s not there anymore.
BLT, I would certainly endorse Mimi's suggestion that you try to get your mother to join this message board. There's so much to learn about this awful disease and how to deal with it, and there is no other place or book or doctor or whatever that even comes close to the knowledge and good advice that can be gotten here -- not to mention the supportive hugs and lifelines.
BLT, I am sorry that your father has alzheimers. Please be patient with your mother. She needs your love and support more than ever. She is grieving. She has a long hard journey ahead of her and you do. You both need each other to hold the other up for support.
Please urge her to join this website. She doesn't have to post...she can read the posts and educate herself. If and when she does decide to post and share she will be welcome and accepted without judgement.