I invite you to log onto the home page - www.thealzheimerspouse.com- and read today's blog - Alzheimer's Disease and Hope. It may seem like a strange title for a blog about Alzheimer's Disease, but I would like you to read it and post your comments and opinions here.
bluedaze, you hope for what I'm hoping for. A doctor and other professionals who "get it" and won't fight you when the end stage is reached.
My husband is progressing very quickly. He was diagnosed only a little over a year ago and he is already in stage 6. Although he has a raft of serious conditions other than dementia, he also is able to do most of the physical things people his age do. He takes long walks almost every day. He comes home on his own from those walks every day. He can still shower, shave, cut his own nails and get dressed on his own. What he is losing rapidly is language and cognitive functions.
So what I was looking for was a doctor I could talk to who wouldn't give me a load of happy horses%$t. Because I need to make plans, and if the doctors are lying to me, how do I do that?
So at this point the only thing left to hope for is that he be happy as long as possible. That he not suffer. And that when the time comes he goes gently into the night.
Starling-are you sure that your husband is stage 6. Sounds like he can still do a lot. I hesitate to stage Bill @ 7 as he is not bedbound and can still shuffle around. Needs assistance with all ADL's
Joan, I HOPE my husband doesn't suffer while he continues through the stages of this disease; I HOPE that I maintain my job, my health, and my patience so that I can care for him; I HOPE that I survive my husband; I HOPE that we have a fabulous time on the cruise with you in February; I HOPE that our friends that we have had as a couple will remain my friends after he is gone; I HOPE that in the future I'll be able to travel to the places my husband and I were not able to go to because AD stepped in - and enjoy them for him as well as for me.
I have NO HOPE that he will get better; nor that he will recover; nor that he will be able to carry on a conversation with me again.
HOWEVER, I am NOT in despair about the Alzheimer's disease striking my husband, nor the fact that he is dying. I call it acceptance of that which I know I can not change. God will take care of him and of me, I have no doubt. I do not rant and rave because this has struck my husband. It is just a fact of life. It happens - he could have been hit by a car; had a heart attack; had cancer. We are all going to die someday. I just wish that one day in the future, when he goes to sleep, the Lord will take him up and give him peace. I'm not ready to give him up yet.
In the meantime, I'm enjoying the love of my life - my little boy in my husband's body and we're having as much fun as we can - and trying to find humor in everything we do. Even in our daily hide and seek games. <grin>
Joan, just because there is no hope for recovery doesn't mean you have to have despair. I've always been an optimist. Some of our friends call me a Pollyanna. I would rather laugh than cry. Change what I can, and accept those things I can not change. Don't let despair get to you. Keep your hope, Joan - WE all need you!
I hope that my son continues to be as patient as he has been with his father. Today they are checking the anti-freeze in all of our vehicles. Yesterday, he helped him with rearranging our pole barn for the winter. All jobs that take much longer when DH keeps changing his mind and overly discusses things.
The only thing that Son doesn't like is when I tell him certain situations like the coffee pot incidents. He doesn't mind being patient and listening, and he understands what is going on, but he doesn't want to hear the "gory details." I need to learn to not dwell on the little things around Son.
Note from Joan - I moved all of the comments from this post and the one after it that discussed the Alzheimer stages to the "Stages of Alzheimer's Disease" discussion. Trying to keep things organized so everyone can find the comments they are looking for.
Joan - I agree that definitive early dectection is crucial to this disease. I hope that one day, it will just be another part of the annual physical in a blood test. If I knew he had the disease earlier, I could have handled and prepared things a lot better with his help while he could still help.
Mary - There are two of us! (and a lot more) I am an optimist, a Pollyanna AND a Goody-Twoshoes. And, of course, I do live by the little Serenity Prayer--let me know the difference between what I can and cannot change---. Reading your post was like talking to myself. Going thru AD w/DH, I once asked the doc why I can be so sad, so blue, so full of despair one moment about what is happening to him (to us) and then be happy, laughing and joyful the next. Shouldn't I just be sad all the time? I don't think we always have 100% control over how we think. I've lived long enough & known enough people to know that most do not change. Some are born laughing and others are born dour. Doesn't matter, AD is not selective. But you see trees still blooming with hope--doesn't mean you don't recognize and feel despair, every coin does have two sides.
Mary in Montana: I have a son like yours. And all our cars!! We were heavy into amateur auto racing, there was always something needing repair in the driveway. When things got bad w/AD & DH was under a car doing who knows what, I could call our son, he'd come over, talk about this and that, cool things down when I could not. But it took me a long, long time before I realized how much our children & g'children were losing, especially son, he and DH were so very close and I had to stop and think about what I was saying to him. Son has all of his father's tools and machines in his own garage now. I was just so focused on my own loss for so long.
Betty, I got a little tear when I read yours. Son is so quite and strong. He is so patient. But when I try to talk about little picky things like the coffee pot thing, he looks me in the eye and tells me that he can't handle hearing all the things. It makes him "down." I know that he will always be there to help when DH needs it like checking the antifreeze in the vehicles. He is also there if I need a good cry or a kick in the a** to get me going. He just can't handle the all-the-time little stuff. Today is his birthday, he turned 29.
When we were working in our pole barn. We started out to move our camper truck from one side to the other (this will allow the camp trailer to go in after hunting season easier). DH changed his mind and just wanted to move it over a little bit. Then he wanted to put our lawn tractors in a bad place. I talked him out of that and put the 4-wheelers there. Then he wanted to move the plow truck out. He had forgot that he had decided not to move the camper truck...you get the idea. Son was so patient.
DH was given a topper with two windows broken. It is a high roof one so we wanted to use for sleeping in for early hunting. They replaced the windows with plexiglass and then painted to match our truck. Son said that it took five hours longer because DH wanted to do it differently than Son. Son didn't get mad, though, just said "uh huh." Son can handle a situation and calm it down so much better than I can. DH will let him take over but he won't let me.
Son has always found DH a challenge. They were not really close but Son has always been there when DH and/or I need him. I am going to be real careful not to burn him out.
Mary, I think the kids have more influence over DH than we wives do, when trying to get them to change way of thinking. I know mine do. He will listen to them more than me. It is great to have their help. Last night when DH fell and was too weak to even get into a sitting position on the floor, I called son in law from next door and he got him to his feet in short order. Thankfully all is well again.
Our Son lives next door also. We have two acres and two houses connected. Great for the little kids to run and play safely. I hear so many instances of this happening with the new generation; the kids leaving close or on the same property.
Here is another Hope. I Hope that Son will still live close as I age so that he can help when I really need it.
When it finally hit me that something was seriously wrong, I asked Son if he'd noticed anything different about DH and suggested he not let him work on moving parts of race cars, but only body work. Son said, 'Oh, Mom, the crew and I have been going over everything Dad's been doing for a couple of years'. Yikes! Same w/daughter, we all noticed things but never mentioned it to each other! I guess we had our reasons--even the pit crew. Son, DIL & her mother lived about a mile away & then decided they wanted to move closer to me after DH died. Are you sure you want to live near your MIL? I asked, two MIL's? Yup, that's what they wanted and moved 10 doors down the block from me. We all get along, they have no children. At first I wasn't sure that's what I wanted, I am a private, loner type of person, but as time has gone on, I am grateful they are there and know that as long as they are able, they will look out for me--and I am aging. Son is 52, daughter will be 55. Surely I cannot be that old! Daughter lives in London, but would be here on the next flight if I needed her. Her 23 y.o. French son now lives w/me, works for Yamaha. Again, I asked, "Why does a g'son want to live w/his g/mother?" Could it be because I spoil him rotten! So, yes, there is always something to hope for and often enough you get something good that you didn't even expect.