I feel like start running and not look back!

Thanks Randy !

Your experience really resonates with me. My husband also has never been an easy person to live with. He's always been a glass half-empty kind of guy, rarely finding much to feel good or happy about, even though we have been fortunate in our lives to have a beautiful family (who live far away now), successful careers and a comfortable retirement. Now that he, really we, are facing a major health challenge, his outlook on life has gotten even more negative. There are ample opportunities where we live to get involved in small groups of people and activities, but he won't try. Like you, I think I should have gotten a divorce years ago, but now I won't consider leaving him because he really doesn't have anyone else to care for him, or even hang out with him, due to his personality. He's just not any fun to be around! I find myself getting more and more depressed and isolated as a result.

Hi, Everyone. This is unusual for me: a second post of the day on the Mayo Forum. Don't ask me where the other one is because my short-term caregiver memory is not what it used to be. (That is a joke.) This morning, I discovered making coffee is something I must add to my to-do list; my LO's mind lost the directions overnight. More and more, giving directions to him for the things he used to handle seems to be as confusing to me as it is for him. I think we are in a new phase, but I can't be sure because there is a UTI we are tracking with a calcified cyst in his bladder, along with the possibility of a resurgence of cancer that may or may not be dormant. I am exhausted by the extra laundry, a weekend visit from his daughter, and the repetitiveness required for instructions to him. I think it is time to take all of that effort to tell him what to do and just do those jobs by myself. -- If and when he remembers, the deck and stairs to the dock are waiting for him to paint it. That is his chosen project: never quite finished, often ignored but always like a Lorelei luring him to get out the paint brushes. I don't know how many coats it can handle before it collapses. It has not been secure since a flood went through here about four years ago It is ridiculous for him to paint it over and over again, but it keeps him busy. I know where he is, and I get a lot done while he is at it. What he plans to do to occupy his time during the winter, we will see. -- There really is nothing I can tell any of you that you don't already know. Planning and patience are the two mainstays of my life and making sure I don't go gaga so I can do what must be done. -- Oh, there is something I have done for myself to achieve equilibrium. I have always wanted a wall with multiple pieces of art. My soul craves looking at things that are beautiful. I am assembling tiny, inexpensive works of art from all over the world. My favorites are from someone in Kyiv, Ukraine. If this guy can make something beautiful while the bombs are falling all around, may be it is possible for me. Maybe it is possible for all of us. GloRo

Book title “The Momentum of Hope”. Many personal accounts of moral injury from combat ptsd, to personal and family tragedies, etc with associated success stories.

Thank you Randy I will look for it. Take care.

We just came back from his appointment with a new neurologist.
At this practice they offer the caregiver, (God how I hate to think of that word applied to me! ) the services of a social worker who you may talk to ( without the patient present) about any problems at home caused by his disease, his temper, etc. and supposedly he or she would give you tips to deal with those things. I made an appointment with her, ( 2 months away, apparently she's very busy) if nothing else it'd be someone I can vent with who understands the situation, I hope. I wonder if you could talk to somebody like that at your husband's doctor's office?
I totally identify with you, I'm very concerned about myself because my calvary is just starting and already there are days I literally would like to just stay in bed and not wake up until all this has passed, however long is going to take.
We need to find a way to get a respite once in a while, or find somebody to talk to who is or has been in the same boat as us.

Hi GloRo,
I deeply admire your disposition in dealing with him in this stage of his life, you don't sound depressed or bitter. You seem to have found the way to take things with humor and lightness.
I hope one day to be able to do that.

Dear Mariana, I also deal with the range of emotions this monster forces on us. I have been depressed, and I have been bitter. And I know that more of the same is in my future. What I refuse to do is to stay in either of those states because doing so would rob me of my allotment of happiness in this life. Notice I did not say his happiness.
In small ways, I carve out a bit of sanity. Yesterday's wet bed, which required a complete strip job, brought a compliment from the gal who brings our Meals on Wheels. She said our house smelled lovely from the detergent I use. It made me smile because I feel I am in a fight against having our house smell like a kitty litter box. If I have any secret weapons, it is organization, patience, and humor. There have been plenty crappy moments in my life to hone my skills in all three. I wish you all the best, my warrior friend. GloRo

Thank you ! if you don't mind my asking, at what age was he diagnosed and how long have you been living with the disease?

Hi Marianna, My husband is 94, and I am 87. It has been about 13 or l4 years since I first noticed problems -- mainly when we drove to our families out of state for visits. When I would give him instructions to take an exit, often he would go past it, and then I would have to rework the route. However, I think it began years earlier. At gatherings, he would not engage and, when asked, would say he liked to listen to the conversation. I believe conversation in a large group was becoming difficult. It took a long time before anyone took my concerns seriously. At first, our family doctor resisted my concerns, but after hammering away, he finally sent us to a neurologist for testing. Russ was told to hand over the car keys. It has been a steady decline with finances, and the running of the house being transferred to my care. It did not always go smoothly -- Russ has an extraordinary gene pool. His father lived to 103. When he says that and beams, I wonder whether it is a blessing or a curse. Even though he has cancer, it is stable, and then there is the colostomy as a result of it. Somedays, I feel like our cup runneth over and not in a good way. Still, most days, we carve out some happiness. He is mostly sweet, and I am mostly resilient. My biggest worry is if the status quo takes a drastic shift. I can't see unloading this burden on his kids or mine. I have tried to make our home as livable as possible for what may be lurking in the future. But none of us is given a guarantee. -- If you have any more questions, do not hesitate to ask. I receive much healing from this forum, as I hope everyone does. Knowing that I may still be helpful to my fellow men and women is good. Maybe that's the takeaway from dementia: it is an opportunity to give. Trust me, I don't always feel like that, but I try. GloRo