To the caregiver wives out there...

Monica, I wasn't a caregiver wife, but my Dad was starting to get Dementia. I never once even thought of telling Dad that he was in the beginning stages of Dementia, why scare him. Dad was struggling enough with age related health issues, I didn't see a reason to pile something so heavy as dementia for him to worry about.

I hope when and if I get dementia, that no one tells me that I have it.

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.

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.

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

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.

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.

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.

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.

Monica/
we were in the “bummer house” 1 year.
it was a 6 month wait for my husbands Neuro-psych test. he didn’t want to go. He was scared. I told him we needed to know what was going on...and it wasn’t an option. by that time I knew he had dementia, just wanted to know what kind... but he was atypical... didn’t fit in any category.

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.

No my spouse did not.

Instead of focusing on the negative - I chose to focus on the positives.

My Father and then my DH both worried about dementia - and I would remind them of all the things they could still remember and how lucky they were to be able to stay at home and be mostly independent.

It's like someone always telling you that you're fat. It doesn't help one little bit! Instead, isn't it nicer when someone says you have great taste in clothing or that you're a fabulous cook?

So NO, I do NOT recommend telling someone they have dementia. Not even early onset as this just sets the patient up for a huge amount of negativity. My dad was diagnosed with early onset at 82 and it sent him into depression. By reminding him of all the things he could still do, he lived another 7 years happily baking his cakes to give away to family and friends. AND, it NEVER progressed! Putting a label on someone is a terrible thing to do.

Hi Monica-
I’m sorry your husband is facing a diagnosis of dementia/Alzheimer’s, with all that can mean for him and for you. It seems to me that you already know there’s a problem. I wouldn’t spend time hanging my hat on a formal diagnosis to start making the changes you know you need to make. I would first approach my husband in general way about making a move to somewhere easier to manage. He may or may not agree. Either way, there are companies that can help you start managing the removal of things you don’t need. I would also talk to his children about what’s going on. If they’re like most adult children, they’ve been waiting for something like this to happen. They may be able to take some of the burden away by helping you find ways to get a plan together.

Yes, I brought it up with examples over three years. Finally he brought it up to doctor with me in the room. She gave him the Minny mental status test and he failed. I cried. He took it pretty well. We pursued neurological care after that.

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 .

Your Doctor should be able to give you a vague diagnosis of a “mild cognitive decline” or “memory loss”. At least that way, you won’t delay doing anything while waiting for the formal diagnosis.

I do not think you have any choice but to sit them down and explain what all this means and what is happening now and in the future and what will and could happen. Perhaps they won't understand it all but YOU are doing the right thing in trying and getting if off your chest. One most important thing is you must get a POA and whatever other legal documents will be needed down the pike now and in order. Do not wait. Start thinking out of the box for whatever might happen and figure out what you would do if this or that happened. Do not wait. Think and act now. Later it will be very difficult or impossible and it might destroy you - and you are totally innocent. You did not cause it and can't fix it - but you can figure out now what are you going to do with what is going to happen. Be prepared for every possible outcome.

Denial is the first response the Alzheimer's patient is going to give. They do not know what is down the road for them because their mind is broken. It is up to their spouse to say - this is what's going to happen - inability to work with numbers, mail, cooking, no driving God forbid - and then toileting assist, ADLs, nursing home care, the quick decline of finances to be able to afford all of that. One relative with Alzheimer's was clueless that they needed the husband to become the wife's agent by obtaining POA. I had to tell them. I've tried to talk to the daughter who said "I don't want to talk about it." To that I say - You are going to have to because I see that your mother already needs help maintaining her appearance. Good grief!

"He still dreams and plans things that are impossible for us to do now, plus he is in denial that his mother... now 92...will not always be independent and driving and we will have to give her more care soon. (She is in an apt. in a retirement community.) And now...who will take care of his mom when DH cannot??? I will have to talk with DH's grown children at some point. They live near us and MIL and the responsibility will go to them (NOT ME)."

That "some point" should be now. If DH is headed down the dementia path, you will have enough on your hands to manage (caring for him as it progresses, getting the house and "stuff" in order/sold, moving, etc), that you don't need to care for her as well. The discussion should happen with them asap so that all POAs, etc can be prepared before MIL is not competent to set them up!

I would set up a family meeting and have the discussion. It doesn't even really need to focus on DH or any Dx for him, just a general discussion about who is willing to take on the role in the event that DH cannot (that role doesn't have to mean they take her in - they would just be responsible for seeing to her personal well-being and medical/financial care.) If you feel it is too much for DH, meet with the kids yourself and have the discussion.

Monica19815: But you are not all alone, in reference to what you posted to Riley. You have the support system of this forum!

My husband has had dimentia for a long time. The very hardest part for me was accepting that he is "gone" and he is not coming back. I just would not accept it for months. My sister and my children were telling me I wasn't accepting it. It got so much easier when I did. I went to a funeral Saturday of my best friend and our 15 yr old grandson sat with his Pawpaw. After they left my husband said who was that man who was sitting in your chair? And I said that was our grandson and he said I sure did enjoy having him visit with me today. We have to find the happy moments in the sad ones.

My husband still does not accept any part of his multi faceted illness He spends all his time thinking about how he will fix himself and what the real causes are. Of course this just makes is compulsive behaviour worse which increases the anxiety which make the parkinisms worse which causes the Dementia to send him off with the fairies by the end of the day

yes. I went through everything mentioned so far. We moved (2014) to an area and a house that I hated but what he saw was a “project “ to keep himself busy. Went crazy getting done. Spending all our savings and getting into debt Then all the incorrect diagnosis, hospital stays and loss of our business. Had to sell all his restored pedal cars and scooters and his 1955 Morris Traveller in 100% authentic condition with only 100 miles on the speedo. Breaks my heart when I think about that little car

When I look back now I can see that has been going on for years. We (me) moved three times in four years finally my moving to another state to be near our son so he could help. 40 years of building, saving and planning all gone. Yes. He still talks about when he gets better. Carries on about not being able to eat unless it’s take away garbage. However nobody wanted to say Dementia. Then one day when he was in a movement disorder hospital a nurse took me aside and said I should get financial and medical POA ASAP and get wills in order. Which I did. This is very important and you should do it now

Getting the correct diagnosis was the hardest thing of all mainly because he was in his late 50’s when it became noticeable. First they thought it was depression and anxiety. Then sleep apnea Then when he was admitted to a local public psychiatric ward it was bi polar because his brother is bi polar. Basically he went in the too hard basket
we moved and a fantastic GP sent him to a private hospital for observation. Drs said not bi polar but possible Parkinson disease. Starts getting treated for that and spent two weeks in a movement clinic where the said Parkinson was minor but he psychiatric problems were a bigger problem. Sent me to a psychiatrist who had interest in Parkinson. He sent DH to a very good private psychiatric hospital and put a team of specialists together. A top neurologist and Aged Dementia specialist and himself. I just said I will not take him home till you come up with a written diagnosis

new age brain scans done that showed not Parkinson. So he has Early Onset Dementia actually Frontal Temporeal which means the front of his brain is shrinking and it causes Parkinson like symptoms AND he has obsessive behaviours and anxiety He is 63 His case is very complex and unusual

so so whatever is going on get your wills in order and financial and medical POA. Also see if he qualifies for disabled pension so a lot a care is free and medicine is cheap. I am in Australia so it might be different for you