We all hear the mantra to take one day at a time. But today even the one day felt like too much to get through( and it isn't over yet).
Just need to vent although I do know lots of you have it even harder. Maybe I am just weary, sad, depressed, resentful And so much more. My DH is showing some new and some worsening behaviors. Last night, he woke up at 2am and got up saying he wanted to be alone and went to another room to a lounge chair. Then he wouldn't get up and shower and come down till 2 pm. So I don't expect much sleep tonite. He is easily agitated and snaps at me all day. Because he always was very handy and helpful, he is into things all day. I am saddened by his inability to do the simplest of things and yet exhausted from watching him every minute. He just pulled the drawers out of our freezer and then couldn't get it back together.
The children are looking into a daycare program and I will try to visit this week. Maybe one or two days a week if we can convince him he is volunteering. Looking down this dreadful road to come, having been advised by doctor that we should have a plan in place before you need it. Soo lonely , so sad, so scared , so tired but of course I pretend to be okay till I get to bury my head in the pillow in the dark of the night. That is how I Need to get through this one day At a time today. Any others finding even one day too hard sometimes?
I remember following behind him picking up and fixing all the things he got into....like having a toddler. It sounds like he is going into the "sun downing" stage, this stage was very tiring until I just gave up and lived his hours....at least I got some sleep. If your doctor is saying to have a plan in place then it is time, especially if the doctor is telling you. Don't feel guilty you have done everything you could do and now it's time to get ready for the next stage of this disease.
Lorrie, vent away! Sometimes taking one day at a time is too much! So much can happen in a day. I've started to divide the day up into segments - lets get through until lunch, lets get through until supper, lets get through until bedtime. It is sad when our LO's have difficulty doing simple things. It just took my DH almost 3 hours to do the supper dishes - but I let him do them himself because there are so few things he can still do. And this doesn't mean that I don't have to wash some of them over again before I use them. So yes, there are lots of times when taking one day at a time is too hard. And your feelings are shared by all of us.
Yes Lorrie some times a whole day at a time is too long. it doesnt matter what stage you spouse is in it is very trying. Hope tonight you get some sleep and that you have a better day tomorrow. Getting respite where ever you can get it is important. Hugs to you
I was the same. A day at a time is frequently too hard. Break it up into hours or even minutes. I can feel your pain in your words. To me, bed was the only time I had some peace and I hated morning and the thought of coping with yet another day.
Lorrie, if you can afford some help to come in, even for a few hours, do it. I think getting just a little break once in awhile is a tremendous help. One day is still 24 hours of constant care, and that's hard to keep doing over and over.
Lorrie, you are not alone - I know you already know that. I completely understand how difficult it is to watch them attempt even the easiest chore. My DH will take half an hour to vacuum even the smallest room but I let him go ahead because it's one of the few things he can still do. Today I took down the tree and all of the decorations but he was not able to help and just seemed so confused by what was happening. I am so thankful when it is nighttime - I have moved into one of the kids' rooms and usually sleep pretty well. I just couldn't stay in our room because he was up and down 8 or 10 times a night, going to the bathroom or looking for something completely ridiculous, like a baseball cap. Lately he has started showering at 4:30 a.m. but I just ignore it because it's not hurting anyone.
I think you should definitely pursue the daycare program - my DH goes two days a week from 10 to 4 and it does give a nice chunk of respite time. I hope you find something suitable.
A few weeks ago, I couldn't think of sending him to Day Care without intense guilt. I am feeling ready now. Just hope we can find a way to get him to go . When he doesn't want to do something, he is beyond stubborn.
Just want to go to bed NOW and of course, he us wide awake! Just don't trust him up alone!
Lorrie, I am sorry that you have reached this level of frustration. I remember it all too well. The struggle to get Dh a bath and in bed at night after an anxiety filled day of watching him constantly I would go in the kitchen just sit and cry. He too would get up every hour or two and then back to bed. It sure seemed like more than 24 hours in each day. Since my DH wanted to walk constantly I did not protest when my DS started visiting ALF's to observe how the staff treated the patients. DS and DD convinced me he would have just as good or a better quality of life in ALF as he would have more walking space. After 2yrs and 10 months it has definitely been better for me and he has not declined but continues his walking. Since your children are checking on daycare they may realize that you seriously need a break from non stop caregiving. Sometimes other family members see the toll it is taking on us. If you find a suitable daycare just go ahead and tell whatever fiblet necessary to get him there. Good luck, Lorrie and hugs to you.
Lorrie: I was sole caregiver for my DW for 24hrs a day for 6 years no need for a respite or aides until the last weeks of her life. The one contribution I want to make to you is that you have got to accept the reality that there is nothing you or anyone else can do or say will alter their behavior, once they put their mind to it, so just go along with it. If he wants to sleep in a lounge chair and hang out until 2pm and not take a shower every single day you'll only survive this ordeal by learnings to say so what! It doesn't make any difference!! You have got to adjust to the horrors of this disease can't let his deficits sadden you as they become apparent, accept the reality that they are only going to get worse and don't beat yourself up over it. Realize as long as no one in endangered by his behavior you can't let it upset you... just let him proceed. However, if he's now becoming easily agitated and snaps at you, don't just accept the status quo: contact your physician, explain your concerned and frightened by his threats and behavior. There are meds that will "mellow out his behavior" and make life just a little more tolerable. You should also have a sleeping pill for him to avoid situations like you just posted last night
Thank you so much for your wise advice. You were an amazing husband and caregiver. I just don't know if I will be able to do this by myself as long.
However, I will try to remember your words as I think lots of my stress comes from trying to change or "help" his behavior. I will have to let some things go. Tonight, he didn't want any dinner but did want a big plate of cookies instead. Because I tried to persuade him to eat , he went to pout in his room. Next time, he can eat the cookies. SO WHAT!!
Thanks Marty. Hope you are finding comfort in the knowledge that you gave your wife the gift of love and caring.
Just because we think someone else has it harder then us doesn't mean that it should affect us less. Each person with Dementia of any kind goes through it differently as do the care partners. I used to read some of the comments and think" Oh my God, you don't have anything to complain about, look what she is going through, so stop whining" then a very wise Social worker told me that this is MY journey with MY DH and to stop trying to compare it to others. Once I did that I found it much easier to vent and not feel bad about it. DH tells me that there is a husband that goes and visits his wife everyday and that is great for them, but my DH will ask me to come then very shortly tell me it's time for me to go, or he tells me not to come this week as he has lots of activities and I will interfere. I just never know. The other couple are not in the dementia world, she has physical problems not mental. No comparing them. Vent all you want when you want about what you want. It sure helps. You sound like your doing great and you are getting great comments from the others. Do listen to your Dr. And get things in place ahead of time, great advise.
Jazzy, you are so right. I volunteer with cancer patients and they tell me that they have no right to complain. They see people so much worse than themselves. I tell them that they have every right to be concerned about themselves. Whatever others are going through, our problems are OURS and we have to deal with them.
Lorrie you are SUFFERING and SAD and your job is HARD! You know, though my guy is in such an advanced and very sad stage in this damn disease, I know that it is so very hard when you have to take care of them at home. I wish I could be there to give you a break and keep an eye on him for you. Oh yes, how I remember that one 10 hour day per week I had a caregiver, those hours to go to town and shop etc. were a balm, oh the brief freedom. I feel for your situation very much and send all my love and support the only way I can, right here. Hugs and prayers to you.
Lorrie, some of us have had to resort to adding deadbolts to your bedroom doors to keep them safe and out of mischief during the late hrs. when I did it I could let him up and roaming the bedroom and know he wouldn't get into trouble. it was a way to get a bit of shuteye as I felt safe he wasn't in danger. same for other areas of the home. you can deadbolt doors so keep them in specific areas and 'AD proof' it for your ease of mind. this roaming sundowning and pacing is one of the worst parts of the disease in my opinion. we caregivers suffer relentless loss of sleep and deprivation. best of luck. divvi
Lorrie, my DH moved out of our room 3 years ago, stating that he just didn't feel well that night - and never came back. At first I felt abandoned a bit but when I realized that he needed a place where he could just relax, not keep up a pretax of being "ok" even with me, I calmed down and let him have his little private cocoon. I remember going through the stage and exactly what you are now experiencing and how overwhelming difficult and heartbreaking it was.
I too had a hard time contemplating daycare for him. Then he got to the point where I was losing my mind and I just TOLD him he was going to go. (It was either that or bop him on the head). I told him that I'd been called about his eligibility to join a Retiree's club. We'd just signed him up for Social Security so i tied it to that. I said that because he was retired, he was entitled to attend and because I still worked, I was not eligible. Actually, I didn't work anymore at that time, but it was a way for me to get out of the house. "I have to go to work" was information he was familiar with, so he bought it.
Even though the building said "Day Program" I just breezed by that and continued to call it a Retiree's Club. He didn't want to go the first few days, but I didn't care. I was so fed up with his behaviors and the stress, I just plowed ahead. It was very like making your kids go to school, even when they complain. You just ignore their comments. The toughest part was actually getting him out of bed but within a couple of weeks at this very fine day program, he thought he ran the place and was furious when he could not attend. At that same time, for the days he was not in daycare, I also hired a woman to come to our home as a caregiver but told my DH that she was there to clean and do projects that I just could not get done. Because he had people in to clean our home before I met him, he was familiar with that and didn't question me too much. She was very nice to him and he warmed to her quickly. They went bowling, out to lunch, and golfing together. He would tell me "she doesn't clean very much, but we have a good time". kinda cute!
One battle, one day at a time. Use fiblets whenever they might work, especially when your explanation might trigger a memory in him that makes sense. Best of luck during this stage. Be gentle with yourself. You didn't cause this and you cannot fix it. You can just be there and try to keep him safe and feeling loved. We are all here for you.
Lorrie - hi again. I feel we are at a similar stage in this miserable journey. Last night was a first for me in that DH was up banging around at 3:30 a.m. (not showering this time) but must have been pushing the headboard of the bed into the wall. When I asked him what the matter was he replied "I can't get out of here" and when I said 'out of where" he just kept saying 'here' over and over. He had completely ransacked the bed - all the pillows and blankets were on the floor and some of the clothes and hangars in the closet had all been thrown on floor. I was told today by another caregiver wife that this is delirium and can sometimes go hand in hand with dementia. I am having him assessed tomorrow by a nursing team from an ALF so have no idea what the outcome will be but I feel that placement is getting nearer every day...........it won't be pleasant but will be necessary for my sanity. As so many others have pointed out here, we have to remember that we are all on our own individual journeys and there is certainly no 'one size fits all'. I plan to take the advice of Fiona68 and use as many fiblets as possible.