Alzheimer's Caregivers Need Sleep Too.

Yesterday was one of my challenging days. Very early in the morning I was finishing up some things I wanted get done before I went to sleep. I was thinking to myself - It's 2:00 A.M. and it looks like I might get to catch up on some long needed sleep. You see my mother has Alzheimer's disease and she Had been keeping me awake. When some one has Alzheimer's it's better if you can sleep at the same time they do.

This isn't always possible because sometimes things need to get done and you don't get the chance while they are awake. So sooner or later you need to use some of their down time to catch up. Sometimes I just don't want a lot of stuff waiting for me when I get up so I try to do as much as I can before sleep. I know I'll have an easier day and I use it as kind of an alone time to slow down and think with out interruption and get in the mood to sleep.

I had a load of soiled clothes in the washer. Not every time but sometimes a person with Alzheimer's doesn't realize when they should head for the bathroom or where the bathroom is. They might not make it on time or may start to have their bowel movement before they sit down all the way. Oops. We have two bathrooms and for some reason mom will forget the one she's 10 feet from and walk though the house to the other one. This is not a good choice when time is of the essence.

When I think of it I often ask her if she feels like she could go. If she is walking around and near the bathroom I will ask her to go and see if she can go even if she says she doesn't need to go. About eighty percent of they time she can go when she thinks she can not or doesn't feel she needs to. Remember to always be nice about it. If it's upsetting to the person with Alzheimer's it's better to back off ten minutes and try again. Trickery is allowed with Alzheimer's and as long as they feel good through the process and after use it.

I like to get any soiled clothes, towels, sheets and carpets clean before I retire for the day. The day left me with those kind of chores. Around 2:30 A.M. I was exhausted and just wanted to sit down for a few minutes. When I went to get up my lower back was out. Not a little out this was major. When this happens everything slows down by necessity. I got the wash into the dryer and did as little as possible until just before 7:00 A.M. when I could head for the Chiropractor. I made it there but never slept until I got back.

When I got home my mother was still sleeping so I decided I would a least try to get a nap. After about 2 hours of sleep the neighbor decided to mow his grass and that ended my nap. I got up to see what was going on in the house and as I passed my mothers bedroom I saw she wasn't in bed. When she gets up to go to the bathroom during the night she may forget she was sleeping and head over to the other side of the house and sit in her reclining chair.

I found this would happen even if the lights are off in the rest of the house. For fear of her walking through a dark room and falling down I now leave one light on in each room of the house except the bedrooms. Enough light enters the bedrooms from the hall light. I also keep the television on in the room with her chair. I do this to catch her attention. Sort of like a moth to the flame.

This will often entertain her enough to keep her from exploring and moving things all over the place. It's a lot better than getting up the next day and find you need to search the whole house for stuff you need. You can't hide and lock up everything or you spend all your time hiding stuff or locking and unlocking everything.

As I approached the back room I could see she wasn't in her chair so I headed for the bathroom in the back corner of the room and she was not to be found. What I did find was the dreaded Alzheimer's misplaced bowel movement. Down the front of the toilet and on the floor. The soiled underwear cleverly hanging from the top corner of the door of the cabinet under the sink. I could see she had made an attempt at cleaning it up.

Please remember the person Alzheimer's disease doesn't do this on purpose and they don't like having a bowel movement all over them. They need to have some one clean then up even after they try to clean themselves up. I can not say this enough so hear goes. Do not get mad at them or show that your are upset or yell about the mess. It will be better off for all concerned if this is handled with a smile and comforting words and actions.

Anything you are thinking or feeling isn't between you and the person with Alzheimer's. If you feel upset or mad or like yelling it is between you and your god. These are your trials and tribulations and has nothing to do with the person with Alzheimer's.

Back to the bedroom and there she was sitting on the edge of her bed with a lost look on her face. She was there all the time but was in a part of the room you can't see if you just walk by the door. I'm so used to seeing that and finding her in her chair I didn't look completely inside as I passed.

I got her up and guided her down the hall to the clean bathroom and got her washed off and helped her get into some clean clothes and back over to her bed and tucked her in. I got her into bed by telling her it wasn't time to get up yet.

This gave me time to then go over and scrub and disinfect the bathroom and to search the house for any other clothes or the like that needed to be washed. Did I mention that a person with Alzheimer's may place their soiled clothing in the strangest places and may require you to search them out. I still can't find a shoe and I've looked all over the place.

Getting down on you hands and knees and cleaning up something that smells really bad until your done isn't my favorite thing. This mess wasn't as bad as some because it just involved the front portion of the toilet, the floor, the cabinet door and the sink. Often this is very watery or even maybe gel like. It goes everywhere. Even places you won't think to look so check everywhere if you are in a similar situation. Believe me it's so much easier when it's fresh.

When some one has Alzheimer's they do a few things when they make a mess. One is they may try to clean the mess up. The mess becomes harder to see but it is smeared over a much larger area. I prefer this didn't happen because there is always a lot more to clean and they get it on their hands and anywhere they touch needs to be cleaned and disinfected. Sometimes they get distracted and just leave it. Now comes the one I like the least. The person with Alzheimer's decides to try to clean up the mess but then goes on to hide any thing that has poop on it.

I'll warn you that they won't hide everything in the same place. This is why its good to know what was there before the accident and what they were wearing and what they carry around with them. That way you have a general idea what you need to find.

Now I have the really bad area cleaned and start to look for anything I may need to clean between the bathroom and where I found mom. Then I go to the bathroom I cleaned her up in and clean that up. Don't stop to take a rest until you get done. If you do a person with Alzheimer's may find their way back into the mess.

If you can't get them to go lay down for a while try to find something to keep them out of the soiled area. It might be a show on the television and maybe music will work sometimes or a snack. Whatever you do make sure you get them to wash their hands or you do it for them. If they do it make sure you supervise. I usually combine the two.

I keep moms fingernails short and I have a soft bristled tooth brush I use to help clean the fingernails and do it often. A person with Alzheimer's will put their fingers in anything so you want to clean the nails well. Remember to keep it light hearted and fun. Talk to them while your helping them and if you don't understand what they say back act like you do. Put a smile on your face and throw in a laugh here and there. It's contagious.

When cleaning I wear throw away purple nitrile exam gloves. I don't care for the vinyl gloves because they don't fit well and the latex gloves fail or rip easily. I try to use the safest cleaners I can find that still do the job and I use a separate disinfectant.

Use natural green products because every thing you use will get into you and the person you are taking care of. If some one gets a rash you'll know it wasn't from some harsh chemical cleaner. If the person with Alzheimer's gets into it when your not looking the outcome won't be as serious.

To deal with the smell I have found that the air freshener sprays just don't work well. I use essential oils and find them to work well. There are many to pick from and you can find oils that smell really good and kill germs at the same time. One or two sprays is all you need.

As far as clothes, towels, wash clothes or sheets etc go it's good to get them in the washer and let them soak with something to kill the germs and some soap. You can wash them when ever you have the time. Do it when your at home and not sleeping. Never leave a washer or dryer on without being home and awake.

The hoses on a washer can burst and flood your house and the pans they now put under the washer isn't going to take care of a pressurized hose bursting. The dryer can cause a fire because of the lint. The lint trap collects a lot of it but some always gets by and collects in the vent. If this lint catches fire and your not home or if you are asleep the outcome will be tragic.

Now that the unexpected has happened and has been dealt with the rest of the day can start. These messes can happen at any time and I don't always wake up to a mess that needs to be cleaned up. This type of thing can be worse than I just described and has been and will be. You just need to accept that this will happen and if you expect it you will find it easier to deal with. Now that you know this is going to happen you won't get upset about it as easily.

It will happen at the worse time. Waking up to it is never fun but neither is knowing you need to be somewhere and you can not make it on time because you need to change your schedule and start cleaning. Maybe people are coming over to the house and all of a sudden there is a streak of watery poop across the carpet and the bathroom is a mess and the smell is terrible and the person with Alzheimer's needs to get a bath or shower.

This is only one type of mess you will need to deal with so get yourself a sense of humor and give up the idea that you need to be in control and that things should go the way you think they should. The only thing you can control is you. Try it right now. Go ahead smile. Better yet let go and laugh out loud. Don't tell any body your going to do it just start laughing hard and loud. Laughing hard is a good way to give yourself an energy boost.

When something like this happens I take advantage of every chance I can to nap. This might happen soon after mom gets up. She may come over and sit in her chair and fall asleep. If she does I'll sit down in the chair next to hers and nap at the same time. Most of the time I know I need to make it more than half way through the day before she wants to take a nap. If she decides to recline in her chair I know that's only good for a half an hour to an hour of nap time. If she wants to go over on her bed for a nap I can usually squeeze 3 or 4 hours into the nap.

Try your best to get a full nights sleep each day. If you can't get it in one sleep period that's fine as long as you can add it all up to equal a full nights sleep. If it's not at least 2 hours long I don't count it. A half hour nap may help you feel better but it won't get your body to start detoxifying. Your body does most of its detoxifying and healing during sleep according to me.

O sleep! O gentle sleep!
Nature’s soft nurse, how have I frighted thee,
That thou no more wilt weigh my eyelids down
And steep my senses in forgetfulness?

Alzheimer's Run Rabbit Run.

I noticed mom was making quite a few references to things that happened decades ago. I remembered this is what my friends father started doing right before he would stand on the front porch and wait for his wife to pick him up so they could "go home and he could watch what he wanted on his television". Well he was already at his current home and his wife was inside and so was his television and he could watch what ever he wanted.

We saw him in the middle of the front yard watching for his ride as days passed. You could tell the way his was moving around and where he was looking he was thinking about walking home. The home they used to live in years ago. After he started to become impatient about waiting it was evident he had to be kept in the house unless he had some one with him every time. He was under close supervision from then on but most of the time he didn't know it.

As time goes by memory gets worse and they will need you to watch them more. Be sneaky watching them or they may find it strange to see you staring at them every time they look your way. The progression is going to be different in each person that has Alzheimer's disease. The symptoms may be different and it gets worse. You need to be aware that as their memory degenerates the memories from earlier in their life will seem to them to be current memories of things that just happened a little while ago.

It is important to take action and get locks on the exterior doors that need to be locked and unlocked with a key on the inside as well as the outside. I put a second set of locks on our doors and I'll never forget that day. Let me tell you my personal story of the day I wished had never happened.

One day out of the blue I felt compelled to put new deadbolts on the exterior doors. I new sooner or later I would have to do it. Why not Now? I went and bought two double (inside/outside) keyed deadbolt locks. One for the back door and one for the front. It was winter so it was cold but it had been going up in the low 40's during the day. It was a late purchase and the stores were closing. I didn't buy new drill bits because I was sure I had what I needed at home or so I thought.

The back door was easy because it already had a deadbolt so all I had to do was take the old one out and put the new one in. The front door was metal on both sides with a wood core. Well it turns out that the hole saw I had was for installing deadbolts in wood doors only. It was hard but I made it threw the inside surface but when it came to drilling from the outside in the hole saw did nothing but take the paint off the metal. Great - all the stores were closed by then.

This is where I should have thought about why I decided to put the locks in this particular day. Why did that pop into my head when it did. This is one of those times the universe was giving me a little nudge by putting that urge in my head. I listened enough to get started but didn't finish. I had realized in the past when I get that type of feeling I had better get it done or the universe was going to set me up with a strong wake up call. I was just so exhausted by that point it didn't register.

Since mom had not tried to leave to this point I decided it would be sufficient to block the door. I placed stuff in front of the door that was heavy to me thinking that a 130 pound 88 year old woman with Alzheimer's disease couldn't move everything and get out. I was tired and not thinking at the time. What I should have done was take the door handle assembly out and put the lock in there until the next day. I could have pushed one of the reclining chairs in front of the door and slept in it.

The next morning I got out of bed and as I always do I went for a walk about the house to see where my mother was. I walked into the living room and saw everything I had placed to block the door was strewn across the room. How this happened without waking me up I don't know. Instant panic.

I had thought about what it might be like when I saw this happening to other families. I can tell you it's so far beyond that and nothing you want to go through. Never! I just woke up and wasn't all there yet. I was thrown into a state of instant panic. What do I do first. I felt every minute that passed and every decision could determine the outcome. The adrenalin was on overdrive and my heart pounding. I felt I had to act fast and no time to think about it. It felt like I was thrust into an altered state of consciousness.

I ran to the door and it was unlocked. I ran around the house to see if by chance my worst nightmare wasn't really happening. I looked behind anything that could hide a person that might have fell down or was hiding but she wasn't there. I ran outside and around the house and looked everywhere. Then I ran to the neighbors and asked them if they had seen her but again no sign of mom. I noticed the crossing guard that stands at out corner in front of our house and ran to ask her. She hadn't seen her either.

I didn't even know what time she got out of the house. I ran inside and dialed 911 for the police and had to tell them my mother was missing and she had Alzheimer's. We live on a corner property so I went out to the corner and looked down both streets. The crossing guard was keeping an eye open for her when she wasn't helping the kids cross the road. There's a school across the street from us.

I was at the end of the drive way and a police car pulled up and there was mom in the back seat. Looking at me with a smile like nothing had happened. All these years I thought it would be her looking at me in the back of a police car. The Officer asked if he had the right address and then pulled in the driveway.

She wasn't in bad shape after the walk she took. They found her a couple of miles away as the crow flies. She wasn't dressed for the weather. All she took with her was two clean pillow cases, an ash tray in her pocket and a pair of the large plastic sun glasses they give you at the eye doctor after they put those drops in your eyes that make it hard to see. No coat, no identification, no regular glasses and she didn't have her false teeth either.

It's really hard to understand what she's saying when she has her false teeth out. The police officer told me the name she had given to him and it was her maiden name. There was no way to connect her to our address until I called. Only about 5 percent of the people with Alzheimer's disease make it home safe when they take off. The police officer said they were looking for a man that had disappeared the day before and was hoping they could find him before it was to late.

This happened January 24, 2006 and it has haunted me every day since. I constantly check the door to see if I locked it. I even check it if I get up in the middle of the night to go to the bathroom. I know I checked it before I went to bed. You do it so often that when I remember doing it I want to make sure I'm remembering doing it right before bed. Not some memory of doing it another time sneaking in and making me think I did it when I have not.

I try to lock the door right after I unlock it and go in or out. Even if I'm unloading the car after food shopping. This is important because I sometimes get so tired that I could fall asleep when I don't plan to take a nap or sleep. I've grabbed a cookie and sat down for a couple of of minutes to watch the weather on the evening news. The next I know I'm waking up an hour later with half a cookie on my chest and cookie still in my mouth.

Always do safety and security stuff right away. Don't tell yourself you'll come back and do it in a few minutes. You might think it's easier or more convenient now but it's not easier or convenient the one time you forget and it leads to tragedy. Do it now!

When mom ran away I had no indication it was going to happen. While I was searching the house for her I noticed she had collected several piles of belonging to take with her. I guess she would start one pile and look for something else to take with her and she would forget about the stuff she had already had together. I found a small plastic waste can she had loaded up with shoes and a strange choice of things to take. So if you find little stashes of things it might not be collecting, hoarding or organizing. It might be the person with Alzheimer's is planning to travel.

When a person has Alzheimer's disease they try to return to the places they went to in their youth. The street they found my mother was were a girl friend she worked with at Bell Telephone had an apartment. Right across the street from the apartment was a diner she would meet up with her friends and they would eat or just have coffee. Having Alzheimer's you don't know where they may end up.

I'm glad she had not headed for one of the places she lived before I was born. When she lived there it was well kept and safe all times of the day and night. I don't feel safe going to that area now in the daytime. Who knows what could of happened to her. Maybe nothing. Even in the worst places there can be a kind person that decides to help the helpless.

I take my job as caregiver very serious and pride myself in doing whatever it takes. It's strange the way you can do everything right time after time. The one time you mess up is the one time you can't afford to.