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While you were waiting for an official diagnosis, did you discuss the possibility of Dementia/Alzheimer's with your husband? How did they react? Did they understand what that diagnosis would mean?
At first, I thought it was important to talk about because i didn’t think denial was helpful. I finally (after 6-9 months of being relentless) realized, as so many of you have said, that denial was not that bad a place compared with massive depression and loss of confidence. We tried one treatment approach claiming to reverse cognitive decline but he was doing it just for me and never was fully compliant because he thought it was unnecessary. It may have helped some, but was probably not worth the cost, and certainly not worth the bad feelings when I tried to get him to follow the eating and supplement plan. I finally “woke up” and realized that what I really wanted to do was try to protect his self-image and self-confidence and make his days as happy and comfortable as i could. So we stopped going to a game night because he was too frustrated at not being able to play well any more. If he wants a glass or two of wine or ice cream or a bagel, (and I’m not seeing improvement from denying him those - and many other - things), then what the heck. Yes, all the issues of home maintenance, driving, loss of memory and problem-solving, getting lost, no longer being the partnership we once were, etc. — those are our “new normal”. But if I keep my cool, he is largely able to keep his, too. He now freely talks about how he can’t remember things, knows that I will be able to tell him his passwords so he can use his iPad, is no longer embarrassed to turn to me in a conversation with someone and let me fill in something he has obviously not been able to find words for, etc. So I’m trying to remain a good friend as well as a loving wife. “God grant me the —- Serenity to accept the things I cannot change (dementia);, Courage to change the things I can (my attitude and acceptance, our living situation, etc.); and the Wisdom to know the difference (now for me, that one requires ongoing attention) - that is the prayer I continually go back to. So thankful I have this group as an ongoing sanity and reality check. Fighting the disease wears me out; Consciously managing my attitude gives me a more useful focus. Control the controllable and let go of the rest. Challenging, but comes with a huge amount of stress relief!
I think, like everything else in life , it depends on the person and how you as a couple have always dealt with major issues . In our case my husband suspected he had AD when his symptoms began because his mother had it . Of course he was very disturbed by the diagnosis but his knowing and accepting it helped us to know that I needed POA and we had to get as much as we could in order while he was still able to . He also knew when he shouldn’t drive any longer so that was a blessing for me . Since the disease has progressed a bit he seems to forget the diagnosis at times and I certainly don’t remind him of it . When he does remember he blames his poor mother and I just tell him that we can’t pick and choose what disease we will get and let’s just deal with it like we did when I had a cancer diagnosis and we slogged our way through it. I tell him we are both getting old I and I’ll compensate for him and he should just do the same for me . This is the way it is now . Tomorrow? Could be totally different and my coping strategies for him and myself will change once again . Who knows but like anything else it’s one day ( one hour?) at a time .
Yes we did discuss it. Because my husband had cryptococcus meningitis he knew he had some deficiencies. But we never refer to it as Alzheimers. He finds that very frightening because his mom died from that and he saw how it happened. We just say he has mild dementia from having meningitis and that is ok with him. But of course it is much worse than that. Hospice diagnosed him with final stage Alzheimers. I don't care what they call it as long as they don't say it to him. When we decided to get Hospice in, I didn't know what he remembered about Hospice so I told him they will come give him 3 baths a week and pay for his diapers. That was good enough for him. Now he has a hospital bed that he loves. Each day is an adventure. I have found that my attitude is the deciding factor on what the day will be like. Right now I have a bathroom to go clean up. I can be angry or accept it so I accept it and I will go do it now.
Hi Monica, Yes, my husband and I talked about it. His neurologist talked to him about it. She ordered the Neuro-psychological test. He was concerned about taking it, but I felt like I needed answers and our children agreed. If I need to talk about it, I’ll use ‘memory loss’ over dementia, it sounds better. I’ve read/learned they don’t need to be reminded. How did he react? We cried many times together. Did he understand what the diagnosis meant? Yes, one reason we tested was to see if it was frontaltemporal dementia (his father had this), but it wasn’t. He still knew the road ahead. Its not been a year since diagnosis. When he can’t think, he will say, “I’m muddled”, “ foggy brained” or “I can’t think”. It was harder for me at the beginning (before diagnosis & early on) because I thought he was faking it. I remember saying, “are you kidding me?” a lot. As he’s progressed it’s gotten easier to see the disease, and I’m not finding myself debating, arguing or trying to reason with him, as much. I’m learning to redirect, or agree, or walk away till I’m calmer. Hope this helps.
It helps A LOT, thank you. I am seeing changes in him every day now. He is a lifetime mechanic and can fix just about anything but he got confused this morning putting batteries in a new toy he bought for the dogs. I am concerned because we cannot stay in our house if he has dementia or Alzheimer's. I sold my house before we got married only because it had no garage and my husband had snowmobiles and motorcycles (which are now all sold), a car he was restoring (and now he has another), a vintage Sportscar he restored, a boat and he HAD to have the garage, the carport, the extra large driveway...even though my house was low maintenance, newer, first floor living, had 2 full baths, etc. Our current house is very high maintenance inside and out, lots of steps, no bedroom or full bath on the 1st floor and he had let the house go for 25 plus years. I moved in and started making renovations one room at a time, replacing windows, etc. but there is still much to do and I alone cannot maintain the house and the extensive foliage, snow removal, mowing a large lawn, etc. I am just hoping the neuro gets us in soon and we can get answers soon. I will HAVE to discuss why we have to move with him. My kids will be 400 and 800 miles away come August (one is currently 3000 miles away but is moving) and they cannot help me. His 2 kids are within 45 minutes but their lives are too full to be of any help (5 kids between them and busy 24/7). Not knowing for sure is stressing me out and I do not know how to get his doctors to act sooner rather than later to get him a proper diagnosis, especially as I see him declining every day. If he can't get into the neuro for many months, I feel I need to start discussing things with him. Maybe his doctor would do that with me. Thanks for listening and for sharing your own experience with me.
When I noticed my Daddy saying weird stuff like my friend was at his wedding... I knew something was wrong. Then his stories... and he is a good story teller... so the true stories sometimes were exaggerated in the beginning anyway... but his stories got to the point where they were not making any sense. So I told him that the doctor called and said he wanted to see us in the office ASAP. So when we got there Doctor did the memory test and the doctor used the words... cognitive decline and memory loss. And when we went to the neurologist I asked him not to use the words Dementia or Alzheimers. So now when we talk and he forgets something he just says... "Oh I am getting old"... and I just say "yup me too". Blessings hgnhgn
Hi Monica- Sorry about the house troubles. I understand. There is a frantic feeling to get your ducks in order. I remember. Our son took a semester off college and helped us get our home & 6 1/2 acres on the market. As sharonheart1942 said, you can’t even talk with them about decisions. It’s a hard and weird transition. Im learning to do a lot more than I thought I could. Selling our car and furniture by myself. Fixing things around the home. We were a team, but now it’s me taking care of everything, and him. I know he would do the same for me.
That was awesome of your son to help with that!! My son would in a heartbeat but he is 400 miles away with a Money Pit house of his own and a new job he could not get away from. I am on my own. I hope I find out I am stronger than I think I am as you did. Frantic is the absolute right word! Did you move to a one floor or a condo or something easier to maintain and for your hubby to get around in?
When I started noticing my husband wasn't remembering things, I tried to get him to see a doctor. At that time I knew that it could be something like a brain tumor. That's how I approached it with him. He acted as if it was nothing and said if it was, he'd just die from it. It took about 2 years to get him to a doctor but it was for another problem, not his memory. Before the visit I advised the doctor what had been going on. By then I knew it was Altzheimers having already been through a lot of the same things with my Mom.
The doctor did agree and started him on Lexapro and Aircept. The doctor talked in front of him and said it was Alzheimers . Afterwards I did not bring it up but waited to see what he said. He never seemed to realize he had Alzheimers which probably is a good thing. It is now around 5 years later and it's much, much worse and we never discussed Alzheimers.
By the time I got him to go to the doctor, I really think the disease had progressed already to the point that he wasn't able to comprehend what the word meant. I think all experiences are probably different but if they want to discuss it, you probably should. If they don't bring it up, then maybe it's more humane not to either. Personally, knowing the disease like I do, I don't want to know I have it and pray It doesn't happen to me.
I have seen blogs posted by people who knew they were diagnosed with Alzheimers speaking of their experiences as long as they could knowing that one day they wouldn't be able too. These sort of blogs by people give you insight into how the person feels knowing what's happening to them and it must be horrible. I guess they went earlier to a doctor instead of being in denial that anything was wrong.
I hope this answers your question. I think it's really up to those individuals involved and the circumstances. I guess there is no right or wrong answer.
My husband's doctor did prescribe Lexapro but we waited until after the blood work came back to have him begin taking it...on the off chance his issue was vitamin deficiency related. He will start that tomorrow. His doctor did NOT say "Alzheimer's" or "Dementia" (I wish he had) but did refer him to an Alzheimer's/Memory Care neurologist. So.....I guess we can deduct that this is what his PCP thinks it is. My husband is a life long mechanic who can fix just about anything. Today he bought a toy for our dogs and, while putting the battery in, which required unscrewing a piece, he got very confused and, after a while of him trying to figure it out, I had to help him get it back together and show him how it works. We have an RV and he is the only one who can drive it. I did tell him we were not taking any trips until the doctors figured out what was going on with him for safety reasons. He was not too happy but I won't relent on that. At what point did your husband stop driving?
Monica, getting my husband to stop driving took too long for me. Since he was always in denial, I couldn't ask him to stop. He wouldn't have and would have been very mad at me. He always drove when we went anywhere together so he naturally got under the wheel. For awhile he did fine driving but a couple years after his diagnosis, he began to miss turns to familiar places. If I told him, he would get upset and insist he knew and just keep going. Once it took us 1 1/2 hours to get to our destination that should have taken maybe 40 minutes. He just wouldn't stop and turn around and we wound up taking a road that eventually led us to the general area. He finally pulled over and told me if I thought I knew to drive myself which I did. Still after that, I prayed God would keep us safe as he continued to drive. One evening he left to go just a couple miles from our house to get fast food. After 1 1/2 hours I finally got a call from a service station that my husband was there and wanted me to pick him up. I took my brother-in-law so he could drive his vehicle. My husband was very upset and said he was turning his license in because he should not be on the road. I thought this was an answer to prayer but by the time we got home, he had forgotten his ordeal. I'm sure he got lost other times too. I really didnt know how I would stop him from driving and was afraid really to say anything. He was still mowing our lawn and one day he put the lawn mower up and left his car keys in the mower. I found them but didn't tell him. When he wanted to take off on his car and couldn't find the keys, I would remind him he had lost them and he'd finally settle down. This was hard but had to be done. Luckily he never ask for my keys. When we were going anywhere, I made sure I was out the door first to get in on the driver's side. If you ask him today, he will say he still drives.
I am thankful nothing really bad ever happened while he was still driving. Hopefully your husband will take it a lot better than mine. It sounds like he has so far. I will tell you that his Neurologist didn't say he should not drive in the beginning but don't remember exactly when he did say that.
It sounds like you do need to move unless you can afford to get someone to help with the upkeep. It is hard when you have always had someone to depend on for those things and then you don't even have someone to discuss decisions with. My husband took care of the outside and any problems with the home. Now it's all on me and its quite different. I hope you soon find out if that helps you to make those decisions. I'll follow along with you to see how it's going. Praying for you and wish I had something more encouraging to tell you.
Thank you for your post and kind thoughts. Your situation sounds a lot like mine...hubby drives us everywhere (and drives the RV while towing our car!), takes care of the outside of the house and grounds (although I have noticed he does not have the drive to do that much anymore other than mowing and trimming bushes and the hedge). I love how you handled the "lost car keys." Perfect. I will remember that. I think I could handle the outside or hire someone but the house is not safe for someone with A or D. Steps to enter on all sides (and no railings), stairs to get to bedrooms and full bathroom, uneven walking surfaces due to all my husband's oriental rugs on top of carpet. And 30 years of my husband's junk filling the basement and garage. We have an RV, a sportecar he restored that I cannot drive, and an antique car he is restoring that is not yet roadworthy. His kids are way too busy to come help out but I know they would support me in whatever I decided was best to take care of their dad. I feel like I am holding my breath, waiting for a formal diagnosis. Hopefully we will have answers soon so I can at least start making a plan
Monica- Good question on where we moved. Our place sold quickly and my husband really wanted a certain house, but I did not like it at all. Pressure, guilt, etc... I caved & we bought it and I hated it. I knew I’d be in that house caring for him and I needed to feel comfortable, like the neighborhood & enjoy the yard. I learned through this that I need to make the final decisions. His brain just isn’t the same. Love where we are now. Master bdrm downstairs, hardwood throughout, quiet park across the street in a quiet neighborhood in walking distance to a market, post office & library. Our family agrees it’s a better fit. I thought of a condo, but my little garden is my sanity... digging, planting & enjoying the beauty.
Your new place sounds wonderful! Thank you for sharing with me about what happened when you reluctantly bought that house you did not like. I will keep that in mind when/if we make a move. How long were you in the house you did not like? My husband's doctor messaged me today to say that he is calling over to the neuro to try to get him in sooner rather than later. The neuro had told me on the phone that they are scheduled quite a ways out. That could mean months. I hope his doctor can get him in soon.
We always referred to it as ‘memory problems’ and still did post diagnosis for a year. He’s only just beginning to accept it’s dementia. He still questions how he got it and sometimes says ‘when I get better’. I don’t think he really knows what he’s got. It’s hard to know how much to say - I tend to just answer questions as honestly but kindly as possible. This can mean maybe not being completely honest. No idea what’s right.
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This is the way it is now . Tomorrow? Could be totally different and my coping strategies for him and myself will change once again . Who knows but like anything else it’s one day ( one hour?) at a time .
Yes, my husband and I talked about it. His neurologist talked to him about it. She ordered the Neuro-psychological test. He was concerned about taking it, but I felt like I needed answers and our children agreed.
If I need to talk about it, I’ll use ‘memory loss’ over dementia, it sounds better. I’ve read/learned they don’t need to be reminded.
How did he react? We cried many times together.
Did he understand what the diagnosis meant? Yes, one reason we tested was to see if it was frontaltemporal dementia (his father had this), but it wasn’t. He still knew the road ahead.
Its not been a year since diagnosis. When he can’t think, he will say, “I’m muddled”, “ foggy brained” or “I can’t think”.
It was harder for me at the beginning (before diagnosis & early on) because I thought he was faking it. I remember saying, “are you kidding me?” a lot. As he’s progressed it’s gotten easier to see the disease, and I’m not finding myself debating, arguing or trying to reason with him, as much. I’m learning to redirect, or agree, or walk away till I’m calmer.
Hope this helps.
And when we went to the neurologist I asked him not to use the words Dementia or Alzheimers.
So now when we talk and he forgets something he just says... "Oh I am getting old"... and I just say "yup me too".
Blessings
hgnhgn
Sorry about the house troubles. I understand. There is a frantic feeling to get your ducks in order. I remember.
Our son took a semester off college and helped us get our home & 6 1/2 acres on the market.
As sharonheart1942 said, you can’t even talk with them about decisions. It’s a hard and weird transition.
Im learning to do a lot more than I thought I could. Selling our car and furniture by myself. Fixing things around the home. We were a team, but now it’s me taking care of everything, and him.
I know he would do the same for me.
The doctor did agree and started him on Lexapro and Aircept. The doctor talked in front of him and said it was Alzheimers . Afterwards I did not bring it up but waited to see what he said. He never seemed to realize he had Alzheimers which probably is a good thing. It is now around 5 years later and it's much, much worse and we never discussed Alzheimers.
By the time I got him to go to the doctor, I really think the disease had progressed already to the point that he wasn't able to comprehend what the word meant. I think all experiences are probably different but if they want to discuss it, you probably should. If they don't bring it up, then maybe it's more humane not to either. Personally, knowing the disease like I do, I don't want to know I have it and pray It doesn't happen to me.
I have seen blogs posted by people who knew they were diagnosed with Alzheimers speaking of their experiences as long as they could knowing that one day they wouldn't be able too. These sort of blogs by people give you insight into how the person feels knowing what's happening to them and it must be horrible. I guess they went earlier to a doctor instead of being in denial that anything was wrong.
I hope this answers your question. I think it's really up to those individuals involved and the circumstances. I guess there is no right or wrong answer.
I am thankful nothing really bad ever happened while he was still driving. Hopefully your husband will take it a lot better than mine. It sounds like he has so far. I will tell you that his Neurologist didn't say he should not drive in the beginning but don't remember exactly when he did say that.
It sounds like you do need to move unless you can afford to get someone to help with the upkeep. It is hard when you have always had someone to depend on for those things and then you don't even have someone to discuss decisions with. My husband took care of the outside and any problems with the home. Now it's all on me and its quite different. I hope you soon find out if that helps you to make those decisions. I'll follow along with you to see how it's going. Praying for you and wish I had something more encouraging to tell you.
Good question on where we moved. Our place sold quickly and my husband really wanted a certain house, but I did not like it at all. Pressure, guilt, etc... I caved & we bought it and I hated it. I knew I’d be in that house caring for him and I needed to feel comfortable, like the neighborhood & enjoy the yard. I learned through this that I need to make the final decisions. His brain just isn’t the same. Love where we are now. Master bdrm downstairs, hardwood throughout, quiet park across the street in a quiet neighborhood in walking distance to a market, post office & library. Our family agrees it’s a better fit.
I thought of a condo, but my little garden is my sanity... digging, planting & enjoying the beauty.
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