And the Academy Award goes to... Pretender

I think acting is a large part of navigating a loved one with dementia. We go along to get along (but usually don't like it). I miss the person I married. I'm unhappy and it's important to recognize and acknowledge that. We have to take care of ourselves. We don't have to pretend with friends and family. And hope they will lend a hand of some kind when we need one, but if they think everything is fine, they won't.

I can't imagine how difficult that must be. The disconnect between what is real , where there's a man who looks like your husband , but this man is a stranger you don't really know. And when you need the real man so much to get through this, reality taunts you by giving you someone that looks like the man you knew but that man is gone and isn't coming back and you didn't even really get to say a proper good-bye to him.. My husband and I are now 80 and have known each other since we were 16. We have been married for 58 years . I am seeing my cognitive abilities slipping through my hands, as can he, and there are things I cannot be trusted to do now, and it's frustrating for us both. We're slowlly adapting to it, but at some point the divergence between who I was and who I am will be huge and he's going to be in your shoes. Do you have anyone who can stay with him for a bit while you go do something for yourself (a massage or a facial, a movie with a friend, or just a lunch where you can be a little bit of your old self for a little while?) As for massages, I believe that Grief can take a strong hold on your body--you're grieving a loss of life as you knew it-- and if subtle hints that she has spent far too much time with you and should move along to the next person haven't worked, another way to show Grief the door is to let a masseuse do it. I have no scientific evidence of this but I just feel very strongly that it helps. If you're depressed (which would actually be a rational response to your reality), perhaps your doctor could give you something to take the edge off a bit. Are there any things you can think of that you used to enjoy that you can do a little bit of? If you enjoyed playing bridge, that may be far beyond his capabilities at the moment, but other simple card games like Fish, Battle, or Old Maid might be doable and bring back a little bit of fun. I know it's hard t o have the energy or interest in re-framing your life, and you truly do have your hands full. But if you could do some little things that might give you some relief and a smidge of joy, that could give you energy to do more things to make your life a tad easier. There won't be a silver bullet solution, but if you can't make a big chunk of changes, maybe you can do lots of little things and put them together into a lovely patchwork of pleasantness every now and then. You can't change your reality. The only thing you can change is how you deal with your realitly.

I guess I can call myself and accomplished actor. Most days/nights my wife doesn’t know who I am. She will get up in the middle of the night (I’m thinking bathroom break) but then I get a call from her asking where am I because there is a stranger in our bed. I get up and we talk for a few hours, (go over our wedding photos, etc) then I can persuade her to go back to bed with me.
She doesn’t remember anything in the morning and if I bring it up (which I know I shouldn’t) she tells me I’m making up stories and get’s mad at me (until she no longer knows me and thinks I’m her husband’s friend/relative/who ever). We no longer joke and laugh like we did for over 50 years. Now I’m just a stranger staying in her house.

On the plus side, she goes to a day care program that she loves and when I pick her up she is happy (but tired). She was going two days a week but starting in 2026 she will be going 3 days a week. I am so happy for her, going to the day care program but I also miss her.

This disease sucks

@wctdoc1943
I do not pretend around friends and family, because I need their support. I only pretend around my husband, to try and keep him happy.

@jatonlouise
Hi, and thanks. I do have a respite care facility where I live, and plan on making a lunch date with a friend while he's there.
Things that bring me joy are baking and watching baking shows, also talking to loved ones or being outdoors.
Sometimes he'll play a game with me, not as often as before his diagnosis.
Thanks for chiming in with great ideas. 😊

@tunared
Sucks BIG time!

Yep, guess many of us have joined the actors' guild. Thanks for expressing this.

@jatonlouise thank you for all the suggestions. Massages are a godsend and it helps to release all the tension in my body. At what point did you admit that you have a cognitive decline issue? I am unable to get my husband to admit it and he gets quite crabby when I ask him questions regarding his abilities. He still thinks the adult daughters do not know. Last week he told our 34 year old that I would not let him buy a new vehicle with safety sensors(we have a 2020 and a 2023 cars). He failed to tell her that he asked for a 73K pick up truck. I do not see him driving for that much longer. He only drives in our small town. I drive anywhere farther than 10 miles.

That's a tough one. And, of course, the longer he goes without realizing ( or realzing but using " denial " as a response) the less likely he might be to opening up to it. As for when I recognized and acknowledged it, it was after I got my diagnosis and read about what awaited me in PD -Landia. It took about 3 years to get the diagnosis, because my only symptom was getting more and more severely fatigued and that made the fundamental cause extremely elusive. It was only when the exasperated doctor who headed the 3rd team of doctors who had tried to get a diagnosis but had failed like the others and decided to abandon the standard practice of FIRST figuring out the cause of a malady and BEFORE treating it decided to do things backwards and use the TREATMENT of a malady itself as a diagnostic tool that Mr. PD was tricked into revealing himself. This doctor gave me ONE l-dopa pill and when he came back an hour later, it was as if I had been to a tent revival where a faith- healer had put his hand on my head,did his thing, and miraculously I could do things I hadn't been able to do for well over a year because I was bed- ridden. And BOOM! I could sit up, walk short distances, stand up. Now I can grab my buddy Mr. Rollator and walk a couple of blocks alone and do some shopping. I can't manage a bag of kitty litter but I can fill Mr. R's basket with smaller things and take some of the load off my husband. Once I had my diagnosis, I began reading a lot about PD and the associated cognitive issues and I started noticing some things I was experiencing. For example, one chore I thought I could take on was filling my pill boxes. Initially I had 8 pilling ' "episodes" a day and I thought I could take over filling the 8 the pillboxes. I had typed up a scedule that showed what I was supposed to take and when. When I started filling the pill boxes, though, I found myself making mistakes now and then so I had to re-check the pill boxes. I knew it was taking awhile but I had lots of time on my hands, so that wasn't a problem. Then my hysband told me that it took me 3 hours to fill them and told me he wanted to do it himself. I had NO idea it was taking that long. But I apparently get lost in time and can't really tell how long I've been doing something, so the time issue and the confusion issue convinced ne that I should let him take that duty back. I wasn't helping him; I was making it harder for him. I also noticed that the thing where you walk into a room for some purpose but by the time you get there, you've forgotten what you came there for, was happening more often. Our flat has 4 rooms: (2 bedrooms, 1 living/ dining room, a kitchen, 1.5 bathrooms, and a foyer.)It 's not that big. But I can still foget why I came into a room. (We moved to Berlin when we retired so we could be close to our son and his family. While I miss the house we left in the States, if I can loose myself in a 3-room flat, I can't imagine what it would be like to wander around in a 4-story house with 3.5 baths, 4 bedrooms, a family room, kitchen, and a dining room, and a living room trying to remember where I was going and why I needed to get there. I do know I would have gotten lots of exercise, though!) Another thing that recealed my cognitive decline was when I got lost on my way to a doctor's appt. The doctor's office is 2 blocks from our flat - go out our front door, cross our street, turn left, walk past 2 houses and turn right, walk 1 block, cross the street, and the doctor's office is 1/2 a block down on the right. I had to call my husband to cone get me. We have lived in this neighborhood for 11 years. I have passed the podiatrist's a zillion times but only recently became a patient there. Although I have always been " directionally impaired" and have no sense of direction, this experience was extreme, even for me. Things like this convinced me that I was having meaningful cognitive issues. Has your husband had any cognitive testing? If not, perhaps these tests might help him come to realize his memory is declining. They will show him drawings of aninals and he' ll have to name them. He'll be asked to name all the animals he can think of. He'll be given a series of words to remember and after chatting about something else for a few moments he'll be asked to recite the list of words. He'll be shown some drawings and asked to draw them. If he's not been tested, this might help give him ( and you) a sense of how his cognitive abilities have been affected. I would encourage you to stop him from driving sooner rather than later. I know that my brain works more slowly now, so it takes me longer to assess what I see and figure out what to do (e.g., if I see a ball roll into the street, it takes ne longer to process this and figure out the appropriate response ( e.g., there is likely a child associated with that ball and I need to slow down and be ready to stop if he comes running after it. And kids are short so I should be especially focus a little lower than I would normally.
Also, my physical responses take longer to cone into play, so when Mr Brain finally tells me to step on the brake, it takes Ms. Foot a tad longer to obey. These 'tads' could add up and be long enough to make a huge difference between stopping quickly enough or not. Also, if your husband has trouble remembering directions, he might get distracted looking for signs or other things to get his bearings and not keep his eyes on the road or he might stop suddenly or in the middle of an intersection and
cause an accident. Or drive too slowly or turn the wrong way onto a one way street. We've all seen these things happen and often they don't end well. Fortunately, we didn't bring a car with us when we moved to Berlin and have gotten along well without one because public transportation is decent here. So we have saved our son the difficulty of taking our car keys away from us. I have some idea o how dufficult that can be. When one of my cousins visited my step-mom, who after picking her up at the airport, told her that she needed her to tell her what color the traffic lights were, my cousins and I tried to get her to give up her car, but she refused. We even asked the state highway departnent to revoke her license but they refused. What saved her from hurting herself or others was a fall that resulted in a broken hip, and she subsequently moved into a long-term care facility. Although she wasn't involved in an accident herself, the Lord only knows whether ir not she did something that caused an accident behind her, while she went merrily on her way, totally oblivious to the carnage she had caused.

I understand exactly what you are saying…I feel like I am losing a little of me everyday in order to meet his needs. It is a very lonesome journey…even when surrounded by others.