Do all of you have a lot of patience or what? We get up at 6:15 (after I holler a lot) He has to get ready for Day Care and me for work. I really like it nice and quiet when I first get up. Have to put our morning pills out and test for my diabetes. BUT he starts in every morning - the same thing - "what should I do now?". It goes on for every single move. I ending up getting very upset every morning. I'm ashamed to say it but it really gets on my nerves. And we go to bed at 9:00 so I'm sure that's early enough. Of course, it's usually 10:00 by the time he counts his money and hides his wallet from "those kids". Another story there.
Well, I get up at 6, and after taking him to the bathroom and settling him back in bed, I take my shower, then hand him his trousers and shoes and help him get them on. I get him settled in the den with a cup of coffee and I get the paper. After I manage to drink my coffee, I brush my teeth, get his pills out, dress for work and give him his pills. I leave the house at 7:30. It is very frustrating when he does things that make me have to rush around to get out the door timely!
Carolyn, this morning when I woke up, he was mopping the hardwood floors around the bed!!!! I keep the sponge mop in the bathroom for his accidents, and there is nowhere to hide it. Usually when he gets up, it wakes me up, but it didn't this morning! So I had to get him back in bed and DRY the floors before taking my shower.
If your husband can dress himself, do you lay his clothes out for him on the bed so he can dress while you brush your teeth, etc.? Will he sit and watch the news or a movie on TV while you dress? I'm trying to think of ways to occupy him to cut down on the questions he asks you. My husband can't talk, so that is not a problem for me.
I know it really doesn't help much, but he is regressing to a two year old and can't remember the steps of his morning ritual, but knows that there is one. They are absolutely dependent on us to think for them. Then later, to help them dress. Then to feed them. But mostly to love them, even when they don't remember us at all. <sigh>
I just took Family Leave from my job last week- it was too stressful getting up at 2 or 3 AM to exercise, read the paper, make breakfast, feed him as he is unable to feed himself, toilet him over and over, shower us, dress us, and get out the door by 6 or 6:30 AM. He is a 2 hour job each morning. He attends a wonderful Adult Day-Care, and the bus gets him at 8 or 8:30, so I had to pay someone to be here. I am afraid financially, very afraid, but I have tried to cut back. My husband is total care. I am on guard every moment for him, as his eyesight is almost gone from this disease. I keep thinking there is a reason for everything. Nursing Home is out of the question, I work in one and know what really happens, and I could not do that to him, therefore, I took leave. I just knew it was time, and trust that it was the right thing to do, as again, I keep thinking, there must be a reason I just took family leave on the spur of the moment. Maybe, I just knew I was not able to work right now.
I usually am up between 5:30 and 6:00 am. I take the dogs out and get ready for work. My husband is at home during the week so I don't need to worry about getting him ready. When that day comes, it will be tough. I write down his list every day. Take dogs out at 6:00 - check. Take morning pills, eat breakfast, take dogs out at 12:00 pm, eat lunch, take dogs out at 5:00 pm, take evening pills at 8:00 pm, take dogs out at 9:00 pm. I have help that comes in Monday's and Tuesday's. She gets here by 10:00. DH doesn't get up until 9 or 9:30. She leaves at 4:00 and I'm home by 4:30. My mom helps Wednesday's thorugh Friday's. I am getting close to the point where I will need to put him in day care.
I don't have a lot of patience and I get so frustrated when I have to repeat the same things over and over and over and over again. I do have to help him with brushing his teeth and shaving. I am also starting to help him with dressing. He tries to put shirts on with his feet now. We try to go to bed about 9:00 pm as well. However, I do watch tv in bed for about an hour. We have one of those clocks that shines on the ceiling. He thinks it is counting money. Some days are better than others.
My husband can still be home alone and dress himself. Many days it takes him until noon to dress himself, so that keeps him occupied all morning. I'm dreading the idea of daycare because of the slowness.
Well, I have nothing to add of substance but did want to let you know I don't have to dress my DH. He can still do that himself and does so, every 5 to 7 days when he FINALLY TAKES A SHOWER AND PUTS ON CLEAN CLOTHES. For probably 2 years now, he's been sleeping in his clothes so he has a real easy morning routine!
Sorry, not working so can't help you there. But, I have found it helps to get up and shower before I wake DH up. Just a few minutes just for me without questions or worries.
its a given some days they have slow days and will not cooperate. you just have to allow a few extra minutes every morning just for that. and they will come:) divvi
I work three 12 hour days a week and my 75 year old Mom stays with my DH when I am at work. I too cannot afford help or day care and he certainly cannot stay by himself. He is stage 6 now. I get up at 5:30 and get ready for work, oh by the way he has been up since 3:00 or so. Goes to bed if I am lucky at 9:00. I am lucky that he is quiet and stays in the back part of the house while I am sleeping(because of a baby gate) and locked outside doors. So he only has access to his room and the bathroom. I am blessed to have my Mom stay with him on the days I work because I have bills and a mortgage as all of you do too, I know. I worry that it is too much for her though some days (poopy days, literally). She is real good with him so I don't have to do much in the mornings before going to work. I guess I am spoiled you can say. I love her for that. Thanks Mom!
We have only one bathroom and I have learned that it takes him 45 minutes to shave, brush his teeth and wash up. I always let him go first while I have my coffee. open the blinds, etc. His clothes are laying out. Then while he has his coffee. I make the bed and get myself ready for work. Watch tv in the morning ? who had time for that! He still wants to make sure he looks good. I'm glad of that tho. I know I need to calm down. I'm the only one in my office and if I'm a little late, it's not the end of the world. I don't have to punch a clock :)
Just a suggestion - Whenever I had to be at work early, and even now, whenever I have to be someplace early, I always take my shower and wash my hair before I go to bed. Did it for over 20 years of having to leave the house at 7 or 7:30 AM. It saves an hour in the morning.
Joan, I have always done the same - do all my stuff before bed. Still do that even though I'm only working a few hours a week. Makes it better for DH. He will get up and shower, shave, himself; and I have that quiet time with coffee!
All I can say is "My hat is off to all of you gals (and guys) who care for a LO and also continue to work". I retired about 4 years prior to AZ dx. I often wonder if I even COULD be caregiver and still work. I can't even imagine how much effort has to go into the logistics of it all. You will always have my undying respect. Kudos to you all!!!!!!!!!!!!
Just a note- the VA pays for the wonderful day-care. My husband is a Viet Nam Vet, with a small, (very small) 20% service connected pension. The VA suggested it to me last year, and again they pay for the 5 days per week plus the little bus rides to and from, plus snacks and a hot lunch. All Vets please check this out with your VA Social Service Dept., at a VA hospital.
I am off for June and July--thank goodness! But I know exactly what you are talking about! Including the frustration. I told my boss what was going on and that if I was 15 minutes late in the morning, I would make it up in the afternoon. Right now B. is staying at his kids for 2 weeks and I am having a much-needed-much-appreciated break. They are getting him in the habit of showering at night. I will continue that when he comes home. It should cut back on quite a lot of time. I go back to work (fulltime) in August. I was having a caregiver come from 11 to 1 Monday thru Thursday. I am thinking soon it will need to be more. I try to stay one step ahead. This journey takes an insane amount of patience. Hang in there Carolyn, it sounds like you are doing great!
Hi Carolyn, ditto all the above. I still work full time, just came back to work today after a short family leave, but my DH still functions well enough to participate in his own morning thing. He dresses himself (usually in the same clothes for 3-4 days) and showers (when I remind him) and I put out his meds before I leave. He doesn't drive anymore, so I think he just sits around all day. He can do some minor chores if I leave a detailed list of how to do, but mostly gets frustrated half way through and doesn't finish. I leave at 6:15 in the morning and return around 6:15-6:30 at night (I have a long commute). Upon arrival home, I have to cook dinner, do the dishes, blah, blah, blah. It's exhausting! I wish I didn't have to work, and I am getting ready to put him in day care a few days a week so he has something to do. Life, and this disease, sucks!!
Got some options today : security at a storage unit for site only, no pay; part time work in the office for just me (no work for Art) at a park in Salem, OR for site; doing taxes for an accountant in Longview,WA. I waiting to hear back what the pay would be. We would have to rent a spot in an RV park for the months of tax season, but he said it would be 40 hrs a week so probably half my pay would go for the park. This is where my dilemma comes in: what would Art do for the 40 hours while I worked? The job in Salem would only be 12-18 hours so that wouldn't be so bad, but no pay.
How do I get over feeling guilty for leaving him home alone? We talked about it (more like I talked) and brought up all the years I stayed home alone while he worked, so it is just the opposite. I need to work at least part time while I can both for my own sanity and financially. The dilemma with the tax job is there will be nothing for him to do except for watch TV and do word searches. If I could find a job in Vancouver, then he would have my sister's shop to bum around in and family to visit.
There was an excitement in me when I got the call from the guy about doing taxes - sort of an adrenaline rush. And for 8 hours a day the AD world would not exist - except knowing me I would be worried about him. I have always put my desires/wants behind his, so this is nothing new. But right now the extra money would be nice since unemployment is running out and his SS will give us to enough to live on, just not do much extra. I know all too many of you can identify with that. Do I dare say 'oh for the day I can take a job without worrying about how it affects someone else'!
First, there are many issues to think about in making your decision:
If you need the money, I would certainly think taking the paying job would be the better option. Except you said 1/2 the pay would go for the RV park, so it depends on how much money is left over. Would it be worth it?
I do not know at what level your husband functions, but even if he is high functioning, it is never a good idea to leave someone with AD completely alone for 40 hours a week. #1. With AD, we never know when things can change. What we think they can do, they may not be able to do the next day. With you gone 8 hours a day, you wouldn't know until it was too late. He could take a walk and get lost; he could forget something on the stove. We just never know what they can and can't do, and that changes without us ever realizing it. #2.Watching TV and being socially isolated is not good for anyone with AD, and may possibly hasten his decline (according to all the research).
If you are going to be working that much, what about sending him to Daycare 3 days a week? That would give him mental stimulation and the socialization he needs. If you cannot afford it, call the Alzheimer's Association and find out what scholarships you qualify for. Or you could contact elder services in your area (the link is on my home page on the left side - Elder Care locator), and find out from them if they have "companions" who could take him for outings during the day. If he is not functioning low enough for day care, try for volunteer work for him. With a little ingenuity and research, you should be able to find something for him to do that will keep his mind active,give him socialization, and keep him out of trouble and safe.
I agree with everything Joan said. A year ago my DH was still staying home while I went to work. One day I left him sleeping. When he woke up he had forgotten that I was at work and went outside in his undies looking for me around the house. One of the residents saw him and came to the office and told me. I was able to lock up and go home and take care of him. That was my wake up call. I immediately arranged for him to go to day care on the days that I work. I told him that they needed volunteers (fiblet). Our day care is subsidized by some organizations so I was able to pay what I felt I coud afford. Otherwise, I couldn't have afforded it at the regular price. I am so happy that DH likes it there.
With two more years until I retire, I find that it just gets harder to deal with my DH while getting me ready for work. He invariably has things he "needs" to discuss with me as I am leaving. He is perfectly capable of dressing, shaving, eating and all the personal stuff, but lately he doesn't shower for like 4 days. When I ask him to take a shower, he informs me he's not stupid and that he doesn't need to be reminded. He also isn't brushing his teeth. His toothbrush remains dry and the paste in the same place. When he unloads the dishwasher I ask himif he has washed his hands. He is insulted, but I am firm about not wanting him to touch clean dishes with dirty hands, and if I don't catch him and ask, there's no telling where his hands have been last.
I also worry about his meds. He insists he doesn't want me to put them in pill boxes. I know a lot of this has to do with his own independence, but I worry about whether he's taking them regularly and the correct dosage. His doctor told me I should be monitoring the pills but he is so adamant about doing everything himself. That is on my list of things to openly discuss again when we go back to see her. Ugh. It does get hard at times.
We are doing a small remodel and it is a nightmare dealing with him. Thankfully, the contractor's dad is an AD patient who lives with him. He completely knows where I am coming from and he deals wonderfully with my DH.
It is now 4 months after I posted my first response and our routine has totally changed. My husband needs help dressing now and he is up all night. He has hallucinations and he doesn't know who I am. I've been working so hard at 3 jobs - my work job, taking care of my husband and then taking care of me. I couldn't do it so I am now on a leave of absense for a couple of months. I haven't been taking care of me so that is my priority. I will be placing my husband in a ALF after the holidays.