That's pretty much what he does. Unless he is following me around the grocery store at 10 paces behind (necessitating frequent checking from me,) or visiting my mom and ailing (hospice level at this point) dad with me, or going to lunch with a kindly friend. If it's not an adventure someone is actively taking him on, he sits in the chair, or lies on the bed, and dozes. And still goes to bed at night. I'm sure this is normal. Does this look like a particular identifiable place on the continuum to those who have been there?
Sounds a lot like where I am. John isn'st very mobile.....we have a lot of PT visits along with the OT from the hospital. I can tell he's getting better, physically, from the months of lying in a hospital bed forlorn in a NH. He can't walk ANYwhere without a lot of assistance. Connected to my hip joint. He sits and just dozes. Lies down and just dozes. Would sleep the rest of his life away if someone didn't stimulate him every day, as much as possible. Even in conversation, he sits with his eyes closed. You'd think he was talking in his sleep. Yea, anyone, is this some indication of a certain "stage" of this awful disease??? He has many very lucid moments, but at any moment his wierdness comes crashing back down on me. This morning in front of the APS case- worker, he started ranting about my boyfriends that I had. (we exchanged rollling eyes). I really have to encourage him to get up and start moving around for his own benefit. I'd like to see him progress physically so he can at least go to the back fence and sit on his swing while I ride or bush-hog the back pasture. Like he used to do. Yes, dozing all the time.
Just as our babies slept away their days, so does my husband. He has a morning nap (short) eats lunch,..watches a little TV and by 2:00 is in bed for a long afternoon nap. After dinner, he goes to bed by 8:30. I kinda think that is normal with AD patients..after Stage 5 anyway. I can always relate his behavior and moodiness to that of a small child.
NancyB, My DH is on the same routine as yours...except instead of TV. he will read, or we will do puzzles, He is in bed between 6:30 and seven. He does have me up during the night with some strange behavores. I am sure it is what we all are going through.
Let me see...RB13,he will shave at 2 am... or take a shower at 3 am... Occasionally get up and get fully dressed and ask for breakfast at 1:30 AM. One day he was up at 5:00 am..trying on suits and matching different ties...for his meeting downtown. You're absolutely correct...most of us on this website have or will experience the same behavior at one time or the other. Odd isn't it...somehow it helps to know we're not the only person in the world living with people who do these things.
Don't think I shared that Sunday I caught him drinking down a mouthful of Old Spice After Shave Lotion (thought it was mouthwash). eeeuuuuuuukkk. He spit it out...and I shivvered for him. I cannot imagine how bad that tasted.
I just wish that my husband didn't think that 3 a.m. was the time to rise and shine!!!! I have to play a movie so he'll sit on the bed so I can sleep! That is how he fell asleep sitting up and fell off the bed this morning!! That was a first.
The dozing comes and goes, but the shadow stays.... <grin> I have to grin or I'd cry....
Weejun, I felt exactly the same way....I would always wonder why some caregivers would want their "charge" up and moving....I was extremely happy when he would sit down and fall asleep. He didn't sleep in a bed or lying down for years....actually not until he was completely bedridden.
I agree with Weejun. I look forward to his bedtime which is usually around 8:00 pm so I can have some "me" time. The shadowing keeps me from doing a lot of things that are perfectly normal (like reading this website) without guilt because he makes me feel like I'm doing something wrong because I'm not giving him my full and undivided attention. But that is exactly what he gets 24/7. I never leave the house without him. He is not yet ready for an outsider to come in, although his sister and our son will do that for me occassionally, but they both have jobs during the day. He has never noticed that I no longer go to my club meetings or the other activities I used to enjoy. I just don't feel comfortable leaving him alone. I would rather stay home than be away from him and be worrying and then come home and find him confused and upset because he can't remember where I am or sometimes even who I am.
Exactly, bookworm. People think I won't leave him alone because I'm worried about HIM - what I'm worried about is the mischief he can get into when I'm gone - and boy, he can sit in one place all day but the minute I leave to run a quick erran d, off he goes somewhere in the house. FOrtunately not out - it is ground into him that he mustn't hold the door open or the cats will get out, and getting out of the house with his walker is close to impossible alone. Close. Not impossible.
I like the dozy times too. And he goes to bed starting at 7 so I can usually shut the door on him by 7:30.
For a while I worried about the seeping most of the time but now I am grateful. It keeps him from worrying, being anxious, shadowing, physical and mental violence etc. and he seems so relaxed and carefree.
I also, am pretty much 24/7 and take him with me everywhere. Usually this is not a problem unless I want to go to the Mall, meeting or fine dining with family, etc. He is still continent but his MMSE is 13. Without upsetting him I am limited to a couple caregivers and family. This Saturday one daughter invited me to a 2 hour brunch/meeting at her Church and rest of my family are out of town. Hopefully I can get one of the caregivers for a couple of hours.
I think the problem with dozing all the time is the loss of muscle tone. My husband has not gained any weight, but has developed a belly and his thighs have turned into sticks. I am afraid that balance may soon become a problem if He doesn't regain some muscle. He needs to do exercises of some sort. I am going to ask for an appointment with a physical therapist--I want to find out what would be most beneficial--don't want to waste time and energy on things that aren't helpful.
My husband still gets up at least every half hour and walks through the house to the bathroom or to the porch. I take him in the car with me every day to go in a uncrowded place like Mc etc. for a meal. Getting in and out of the car is good exercise and takes him a while but I let him do it himself. He usually dozes in the car and I frequently try to focus his attention on the scenery. Yesterday we also stopped at Aldi's, one of the two stores he likes to shop in. The other is Gabe's. Aldi's doesn't have a public bathroom and I have to be sure he goes before we get there, but Gabes has a handy one in the front. I also try to get him walking to the garden every day. Muscle tone still losing but he doesn't have the belly most men his age have. This fall I am going to restart at the local gym where he can use 4 of the machines with my help. Think I will do more PT also then for his spinal stenosis. He has used most of his allotment but still has some and they say the allotment can be extended for spinal stenosis and he loves the attention the girls give him.
Like I've mentioned on other threads, John is recieving lots of PT and OT from the hospital...it's been amazing to see how much he can do that wasn't possible a couple of weeks ago. He USED to have a big belly....went from a size 38 to a 32 over the past several months. I wonder If I'm asking or expecting too much at this stage (whatever it is) for him to develop muscle tone and coordination enough to be able to come out into the yard and garden and enjoy some of what he used to do. Wonder if it's a matter of the disease progression or the result of being in the nursing home and in bed, disregarded for so long. Guess the real expectation of all this therapy is to get him to become more stable so he isn't such a fall risk.
Emily, Your day is very much my day. If he does not accompany me on errands to the bank,grocery store, drug store or library, he just sits, turns on the tv and sleeps. He does not care which channel is on and often it is c-span. At home or in stores, he follows me around and I worry that I will trip over him, he is directly behind me. I went to a caregivers all day conference on Tuesday. He came with me because I did not feel comfortable leaving him home. Afterward, he was very tired and slept most of the time for 24 hours. Yesterday, I had an afternoon Dr. appointment. I woke him up to tell him I was leaving and where I was going. When I returned he was very upset at me, id not know where I went and thought I had been gone the whole day.
It's really strange about the dozing, isn't it?? My DH is 86 and NEVER takes a nap during the day. Even aside from AD, you would think he would take a nap once inawhile! I encourage him to, but he says if he naps in the daytime he won't sleep at night - so I let it be. I'd rather him sleep good at night and he does!
My DH takes a 2-4 hour nap every afternoon, then sleeps about 10 hours at night. Until AD, I never saw him take a nap ever. The thing about the nap is he wants his head laying in my lap while napping. At first I resisted being tied down like that, and his feelings were hurt. So now, I tape shows I like that he doesn't (Food Network, The Learning Channel, Style, Discovery Health) and watch them all while he is napping on my lap.
My wife usually dozes in her chair while I am on the computer, like now. At the moment, though, she is looking through TIME magazine. I don't know if she gets much out of it, but at lease she seems interested. She has had 4 cups of coffee this morning, so that may be having an effect.
I get a kick out of DH coming around 9 PM to tell me -- always rather apologetically -- that he's going to bed. He seems to feel bad about deserting me whereas in fact I'm delighted, because I can enjoy the free time, and eat the ice cream and other wicked stuff he's not supposed to have. He has the waking up in the night problem mostly when he knows we're going somewhere that day. He would like to be underway by 6 AM to be sure to get there on time. So I try to talk about the plans ahead of time, but not the day before. Problem is that he often asks about our plans for tomorrow, and would resent it then if I kept plans to myself. He is also very bad in hotel rooms and when sleeping at other people's homes. In Madrid last September he was up and dressed at 3 AM every morning and mad at me because I wasn't ready for breakfast. But we recently went on a hiking trip with friends and then he was so tired every day (he's used to cycling but not walking, and he stayed up with the group every night till 12) that he slept better.