Hello all.
I am just venting a bit. My husband's progress in this disease continues and at times he seems to be doing well which brings hopes of maybe a plateua and within minutes he slides further down. Kind of like being on a roller coaster. Tonight he had some problems and I find myself getting impatient with him. I try not to let him know I am upset, but inside I am so frustrated even though I know he can't help it. At these times I feel like a horrible caregiver for being frustrated with him. Again, just needed to vent.

I can relate to the patience, it is very difficult. Don't beat yourself up. I do recommend making sure you have enough time for you. It will help you so you don't lose your patience so easily with him.

I try to fit in time each week for an outing with a friend. I really need it. Often we just meet and go for a walk somewhere and then find a little cafe for lunch or tea. But to fit that in, I need to try and keep our schedule quiet on either side of my outing. Not always possible. Life happens. Unanticipated things come up. Then hubby either makes a negative comment about my plan or asks me to cancel it or sometimes just pouts.
Once a month I get together with an older friend whose husband has AZ. She is the only local friend I've confided in re my concerns about hubby's cognitive challenges (possible FTD???) so I really look forward to our get together. She, in turn, appreciates being able to share freely knowing I have some understanding of what she is experiencing. She can't get away very easily so we set our date/time well in advance. Last month, hubby looked at our calendar (which I keep open on my desk so he can check to know what is happening each day) and he noticed my upcoming outing and asked me to cancel it as he wanted to do something with me.When I asked what he'd like to do, he had nothing specific in mind. We are home together a lot and although I suggest outings for us, he finds it hard to commit / make a decision / initiate plans. Just wanted me to cancel my plans to free up that time. I suggested alternate times but no, he might like to go for a bike ride that day or no, he might want to do something else that day etc. (Most other days that week were totally free). I was rather choked . . . A few hours later, someone phoned hubby and asked if he'd like to get together for a bike ride and coffee on same date and time as hubby wanted to do something with me/had asked me cancel outing. I listened from the other room expecting to hear hubby say, no---I'm busy with wife that time but instead he said, Sure---that time/date would work great. Whew! It worked out well.
This month, I knew I needed the outing/get together as much as my friend needed to get together. (Extra pressures last couple of weeks). Wouldn't you know it----hubby looked at calendar / questioned the outing again / and then pouted. I recognize that the extra pressures have affected hubby but . . . I went anyhow----enjoyed the time out-----came back refreshed to better face the pressures. Me thinks that in order to have that friend time, I need to schedule an outing with hubby the day before. Maybe then he'd feel okay about my times away?? Only problem is he often says no to suggested plans to do things together because he "doesn't have time". Yikes! He gets up, has breakfast, reads, might putter around doing something, has a coffee, reads again, has lunch, naps, makes a tea or coffee, reads again, has supper and then evening is to relax and read or watch videos.
I've rambled but I do think it is important to fit in time for ourselves----somehow, some way. I imagine as time progresses, the "how-to" of doing this will change but I know I really need it.

Sandy, how are you managing a couple of days away? Will hubby be on his own or will someone stay with him?

Sandy and others, there is nothing so awful about feeling impatient. We're human, we're dealing with difficult circumstances, we all feel that way some times. It's how you deal with it that matters. Sometimes it's just so hard not to snap at them for asking the same question a zillion times, or something equally annoying. Time alone, physical exercise, going out in the garage and hollering, whatever works for you - try to find an acceptable outlet for your feelings so they don't build up too much. Some days the best we can do is to recognize we're being impatient and try to do better.

All of the above is wonderful advice. There are many ways to deal with impatience and some of the time, even most of the time, they work to a certain degree, but there comes a time that nothing works and you do lose your patience and you yell, cry and/or get angry. Then you deal with that by getting over it. It happens and you can't undo it. Forgive yourself, move on and do better next time.

When I plan an outing, lunch with a friend, book club, I don't tell DH until the day of the outing. Similarly, If he has a doctor or dentist appointment, I don't tell him until right before. He tends to agonize over future plans..I told him we are going to visit our daughter the end of April. Out of the blue last evening while we were watching the news he said maybe you should -- He couldn't. think of the words to say, stop the mail. He thinks we leaving this week. It is too confusing for him to let him in of distant plans.

maryd & zibby, I too wait (most of the time) until the day off or evening before telling my hubby about a planned activity / appointment / commitment. Before I used to check with him to see if my plan or commitment would work okay for him . . . very frustrating as he'd fret about whether "we" could fit it in and whether the car might be needed by our college aged children or whether I'd be back in time to make dinner and what about this or what about that??? He'd say he needed time to think about it . . . . I'd wait a reasonable amount of time and ask again only to discover he was still undecided. After discovering this site, reading up on various dementias I finally realized that a) the indecision likely was another symptom of his cognitive problems b) this was not normal and most mature adults simply make a decision and move forward c) recognized that it wasn't worth the hassle/stress to continue asking him to do something he has difficulty doing. But I do write any extra plans/commitments on my desk calendar (including class and work schedules of our young adults living at home). But last minute things that come up can really throw him. Very hard for him to process whatever need has arisen and juggle plans. Even if he doesn't need to be a part of the change, it still unsettles him.

Thank you all for your kind responses and understanding. It is so good to be able to share with people who truly do understand and can offer suggestions and support because we are all going through the same things. Rachelle, you asked how I plan to get away for a couple of days, and my husband will be staying with my daughter and son in law and grandaughters while I am gone. However since his guide dog died yesterday, those plans may change. Today was a rough day. I will do what is best for him.

MaryD I have the same problem..If I tell DH about an appointment or event too far in advance he starts to ruminate over it for days. I learned this very early on.So I remind him of a doctor appt then next morning the evening before so he gets the idea he needs to shower, I am finding, however, he likes to dilly dally. Before he was ill with this, he would do that sort of passive aggressive thing,,never really mean about it but if it wasn't high on his skyline it was not a important as something related to his world. It continues He will read the paper or find someway to dilly dally so I am learning to do the fiblet thing about the time...fiddle with the clock if I have to so we get out the door close to on time.