After a long plateau DH is declining rapidly right now. I had gotten comfortable in the situation being somewhat stable even with all the problems. But now I'm thinking about the future and what will be required of me. For now I can leave DH alone at home while I go to a meeting or shopping. I recently decided I could don't any longer feel comfortable leaving him alone over night although there hasn't yet been a specific problem.
My main concern for the future is gardening which I'm counting on as my main pleasure in life. How do those of you past early stages handle being outside the house or not in the immediate vecinity? I can't believe I've read so many books on dementia and don't know these kind of practicalities. My son and daughter-in-law use a baby monitor when they're not in the same room (napping) as my grandson so images of myself gardening with a baby monitor keep coming to my mind. Then I realize I'd need a "whole house" monitor so guess that doesn't make too much sense.
Simply put (hard for me obviously): How much physical supervision is needed?
AND how do you know when that stage begins? None of his doctors refer to stages but I'd guess bewteen 4 and 5 but it's hard to pinpoint. He still dresses himself, takes his own medication, can cook quite a bit, and doesn't seem to get lost. He recently stopped driving. But as I said we seem to be in a rapid decline so I want to prepare.
Terry, yes, it sounds like stage 4. We have progressed a little further, into a solid 5. He would not take any medication unless I put it in his hand with a glass of water, and much wandering, getting lost, etc. Gardening -- I have the same love of gardening and haven't really found a solution for how to do it when DH is home. I can get him to "take a walk" with me to look at the flowers and then I start doing some work and he will usually hang around for a while or sit somewhere (we have a portable yard swing) where he can see me. That's when I feel best. He doesn't usually get into mischief indoors when I'm outside but you never know; after I while I get antsy and go check him out. On good days I can occasionally put a clippers into his hand and a wheelbarrow full of debris and he will clip them into small bits for the compost. He also likes to pick at our birch trees, pulling bark off. Supposed to be not good for the trees, but I figure what the heck -- as long as it's good for DH. And the birches are still thriving. The other day it was a gorgeous morning and he was sleeping in so I worked outside for a LONG time, checking periodically to see if he had come into the kitchen. Finally I gor worried, went into the bedroom, and there he was, up and sitting at my vanity still in his pajamas. He seemed very down and I'm afraid he thought he had been abandoned. He may have been up for hours, couldn't tell me. If I want to go out again while he's still sleeping I could open the bedroom curtains so that I can peek in from outside, but I'm pretty sure this would wake him up.
Terry, Picture your husband as a three year old. Whatever precautions you would make for the three year old, make for your husband. It is safer that way. Where you go, take him with you. Give him something to do to make him feel like he is "helping" and you will find that sharing your interests sometimes brings more pleasure during this stage. It did for me. He just wanted to be with me, and I had yard work, and going to the nursery for flowers (he held a couple of flowers for me while I picked out the others).
I learned that some of my activities had to be put on hold until I had help who could watch a movie with him so I could get other things done.
There are some things that I decided were not so important that if I didn't get them done this year, no one would care but me, and I'd get over it. I learned to be flexible. But the one thing I didn't do was leave him alone. He was never left alone in the house while I was outside. A three year old can take off from you...so can your husband. A three year old can eat things that aren't meant to be eaten....so can your husband. So either have a young relative stay with you, hire someone for two mornings a week so that you can get your errands done or just work in your yard alone....
I've thought about the baby monitor here as well. At least I might hear him get up in the night..but he's a roamer and alarmingly, he went into the room where our daughter was sleeping, thinking it was the bathroom..When the daughters come, they sleep in their 'old' rooms which are closest to 'his' room. Unless he goes outside & comes back in a lot during the night, I may not hear him. There are bells on the door that rattle but he is often so quiet that a one time door opening isn't heard.. Its getting more and more necessary to keep an eye on him all the time. I left to go pick up a package (20 minuntes) and when I got back he had ridden the lawn mower to the store to fill it with gas. Smelled like he spilled gas all over his shoes etc.. If I hadn't seen the bottle of Cherry Coke on the lawn mower, I would have assumed he spilled the gas when pouring it from the gas can..He's not at all bothered by traffic, spilled gas or anything else.. I'm trying not to leave him here alone at all but all things considered, he would have probably done the same thing if I had been IN the house not paying attention.. He can get away and will.
I like Mary's analogy of the three year old (or two year old, depending on the stage). I think it's easier to recognize the dangers that someone with dementia can face if left alone when it's put into terms like a small child--we're all more used to that.
Judy--it sounds to me like a baby monitor may be some help to you, but perhaps other things could be added as well? I don't know what stage your husband is in, but your description of what happened when you went out for 20 minutes would give me pause. One suggestion for when you are home, but somewhere else in the house--our alarm system has a voice that speaks when any door or window is opened. Also, I've been told that putting another lock on a door, but way up high, is enough to keep someone with dementia in.
never let your guard down. they are escape artists and in a very small time frame get into alot of trouble or leave as did judys spouse. mary is on target they are toddlers mindwise in an adults body. dont be fooled by the size of the body the mind is not on the same keel. treat them as you would a small child that can get into danger relatively quickly especially if they are prone to wandering.
Keep in mind that just because they would never help you with something before AD or had no interest in it, does not mean that they will not help you or do that thing now. One of the hardest things for me to adjust to were his doing things with me and helping me with things that he had never done before. I wasn't used to thinking about him in that respect.
The key words are keep them safe. Recognize what the possibilities and dangers are and do something to mitigate them before it becomes a problem. The opposite of my previous paragraph is also true - just because they don't do something today (like wander) does not mean that they will not do that tomorrow.
Very helpful albeit depressing comments. thank you. Mary, DH at this point seems more like an 11 year old in some ways and an 8 in others. I guess I'll soon see how quickly he can regress from 8-11 to 3.
I'm still not sure how I will know when he's at this "younger age" stage needing the constant supervision, but I imagine it will be like the driving as I observed him like a hawk. He could still drive when I had him give it up a few weeks ago, but he was driving too fast in these winding rounds and the last straw was when he took his frustration out in his driving scaring me and my friend in the car.
Mary, it seems clear from what you wrote that I need to make some mental adjustments to the fact that my plans for the future of finding solace and peace and satisfaction in the garden is not to be, at least not in a solitary way. Sounds like the most I can hope for is that I can get him to come sit outside while I garden. He certainly wouldn't be willing to do that now but for now I don't have to watch over him as he watches television or plays with the dogs, etc. I do have him come out and help me but that often leads to frustration on his part as he finds chores more difficult to do and triples the work for me.
I have no relatives or anyone else to help in any way or anyone to watch him when the time comes. I see I better start searching for someone to hire to come in on occasion but I am sceptical as finding help in this little town is a nightmare.
I guess right now is at that in between age of a child too old for a babysitter but too young to be left alone for long.
Right now I can't go from one room to another without DH following. He watches me cook, fold laundry, water the flowers. If we are at our daughter or son's for a meal, he has to sit next to me. I think he is in stage 5/6. He gets confused when something changes, has trouble finding words. At times I feel suffocated. I don't worry about him wandering at this point.
Terry, my dh is still very capable of dressing, showering, independence but there's no way I would leave him alone since I have no idea of what he would or might get into. You should take the same precautions you would with a 3 year old, even if you think he's around 8-11. Trust me, he will do something which will catch you off guard all of a sudden without warning. It would be wise to get someone to watch him while you do your gardening, etc. Try local churches for volunteers, area office of the aging, your local alzheimers association, social worker at the local hospital or even your dr.s office may have referrals. suggestions on where to find someone.
Terry: My best advice is not to do like I did, ie, just follow him around all day from one room to the next. I wish I had asked your same question when my DW was at the stage where you are now.
JudithKB, My DH is 72. He was officially diagnosed 5 years ago, but has shown symptoms for at least 10, more likely 15 years. Since we returned from my brother's funeral in PA he has been my shadow. He became very confused while there and was expecting a wedding for some reason. This was the first death in our family of someone of our generation.
Terry--I was in the same boat as you regarding having no relatives or friends that could help me with DH. I started out with an adult daycare program, later on, combined that with bringing in an aide. He thinks the aide is here to help me--she does clean the house, and he has said several things that show me he thinks I hired her to do cleaning. With the current economy, I'd be surprised if you'd have trouble finding help. They don't have to be a CNA (Certified Nursing Assistant), especially if your husband is between stages 4 and 5. The main thing is finding the right chemistry, someone that he will like being around and that you like as well.