78. Even if you think are nowhere near or that you will not need nursing homes or assisted living places, go visit some anyway. The absolute worst time to check out homes is when you are desperate and distraught. If you take a day to go around and visit (just for information purposes only), and you know you do not need it right now, it puts you in a MUCH better frame of mind. Take all the info, and keep it in a file folder.
Re cutting up food: stir fry is very easy and you can cut the food up in the prep. Or buy chicken fingers or whatever that don't need to be cut much. I find I cut things into bite-size pieces just by habit now. And stir-fry goes with rice - and yes, every single grain must be retrieved!
79. Husband has always shopped for his clothes and was always coordinated and well "put together." I had no idea what size he wore. Vascular dementia hit me up side the head yesterday in a new way. We were in a farm store, and he wanted a pair of jeans. I found him looking for "his" size and asked if I could help. He told me what he needed. I found it, it seemed like it would be too small, but he said it was correct. We got home, he looked in the package and said, "These are for girls. I can't wear this." (They were men's jeans.) I said, "They're the size you said you needed." "I probably did, but they're too small." So, today, I'm writing down his size for various articles of clothing, and we're exchanging the jeans--in a store that's 45' away from us.
Funny you should mention sizes, My DH has lost about 30 lbs since this disease overtook him, He just doesn't have the same appetite anymore. His clothing started hanging on him. So, I went to a local thrift shop (which is what I do when I lose or gain weight myself, :) ) And I bought in the size I thought he is now, wonderful. I figured if $3 pants didn't fit, I would just redonate them, but they do, and now I know better than he, what sizes etc. I've been buying his clothes for awhile now, because he just has no idea, and he was always a very natty dresser. Now I'm lucky if he takes off his pajamas.
DH needs new undershorts and t-shirts. I'm going to get them out of the Penny's catalog and buy a size larger. I notice his clothes are fitting a little snugger. He'll wear the same pair of jeans/sweat shirt every day for a week unless I confiscate them and throw them in the laundry bag. Another thing, he says he takes a shower every day and that's just not true. I was clothes once a week now and I shoulr theoretically have 7 pair of shorts, t-shirts and socks. I'll be lucky if I get 2 pair of shorts and t-shirts. I always get 7 pair of socks and 7 hankerchiefs. What's with this. I just plain have to tell him to go take a shower because he's starting to smell sweaty. Then he gets all apologetic and takes a quick shower.
I went through the too few clothes problem for quite a while. About this time last year he just could not figure out which clothes to wear to stay warm enough and I took over putting out clean clothes every day. I also have to remind him to shower. At this point he is still using soap and the sponge, but I'm cheating. I soap up the sponge myself when I take my showers so there is always a little more on it than there would be otherwise. I've peeked. He is washing.
Mawzy, I suggest that you put out a set of clean clothes every night when he goes to bed and grab the dirty ones and put them in the hamper.
He sleeps in his shorts and t-shirts. He puts his socks and hankerchiefs in the hamper himself. He gets aggitated if I tell him he needs to change shorts. I lay clean shorts and t-shirts out and ask him to put those on after he takes a shower and it's as if he feels good that he's caught me trying to trick him. Is this just a phase that he'll come out of or is this one of those 'forever' things?
80. Hold your spouse's hands occasionally. If they are ice cold, you might rub them to help warm them up, and give them a heavier shirt to wear. Sometimes they can't tell if they are hot or cold; nor can they tell if the temperature of water or food is too hot or too cold.
I'm not sure if I've put this one in here or not, but I think it is important.
81. If your LO normally does all of the driving when both of you are in the car, get him/her used to your doing at least half of the driving now. It will make the transition to your LO not driving at all much easier.
This is one of those things where I wish someone had suggested this to me early on, because as his range got smaller and smaller, mine could have gotten bigger and bigger.
I actually told my DH that I needed the practice driving, because he did so much driving, I never got a chance to practice. So he 'lets' me drive but tells me what to do while I'm driving. This is fun.... not
We have so many new readers here that will benefit from the information on this discussion, that when it falls to page 3, we bring it "to the top" so that it will stay on the first page. It takes DAYS to read all of these discussions now, and new readers don't have the time to read all of them, but need to try to pick and choose topics. Those of us who have been here for a while realize that the tips given here would have aided us the most when we first discovered our spouses had AD.
82. They get real sensitive to sensory input...all the 5 senses go wacky. Lights are too bright, any slight touch "hurts" them, noises are too loud, noises are frightening, bland things are too spicy, spicy things aren't noticed, and on and on.
83. If your neighbors are not aware of the diagnosis, you need to tell them. Most neighbors will be on the watch for your spouse for you without your asking, and if you work, give them your work number. Neighbors are invaluable at stage 2-4 in allowing you to continue to work while your spouse stays at home.
84. Keep a spare key hidden outside of the house, make sure your trustworthy neighbor knows where it is. If your ADLO locks themselves out of the house the neighbor can let them back in.
85. Master key all of the locks to the outside doors to your house, this allows one key to work any lock in the outside doors.
86. If you have deadbolts make sure they can be unlocked from the inside by turning the knob or lever on the lock and do not require a key to unlock.
87. Consider getting a necklace alarm for your ADLO, if they fall they can press the button and call for help. Have a drill every month so you can be certain they are still able to operate the alarm button and know how to use it. The time will come when they no longer understand how to use it.
88. If you are still working make sure you have the trustworthy neighbors phone number at work.
89. If they want to wear their (clean) PJ's all day that is OK, it's not worth the effort or hassle to try to win this battle.
90. Exception to number 86. Once your spouse is in Stage 6 and is prone to wander or goes outside even in the rain, then get key lock deadbolts to prevent them from going outside without you or someone to supervise them. This means that you must keep a key on you at all times. And give the neighbors one in case you need help and can't get to the door yourself. Each stage of this dreadful disease requires different safety measures.
Thanks for all your helpful information that you have all shared. My daughter programed ICE (IN Case of Emergency) in our family cell phones. If you leave a space ( in our cell phones to leave a space, push #) before you type in the letters ICE, ICE will appear at the top of directory in your cell phone. Pat B. mentioned this on page 1 and gave you the website for information about ICE.
Don't get insane about bathing. Once a week is certainly adequate for an older person who is not doing much. In between, get some baby wipes, and do their underarms and bottom. Their skin gets very fragile as they age, and especially in the cold weather, they just don't need to bathe every day.
While searching i came across this website at UIHeathcare.com. if you go to thier website under search and type in Alzheimers Disease A caregiver's guide, there is a huge amount of wonderful info about everything for caregivers and AD. if someone could paste it here (I cant paste) or if joan would post it under useful sites for info, its amazing stuff and really good input. has good advice on every subject!i wish i had read it early on! divvi
divvi-awesome site-much too much to paste. Best I've ever seen. Easy to access the specific info you need. I especially liked the drug portion. Thank you for sharing
yes the drug info for AD's various needs during the stages is just super. i hope everyone visits this its just the most informed and organized place for info! thanks bluedaze for checking it out and vailidating. divvi
I quicky scanned the site and was impressed by the travel section and the part on handling aggression. The site mentioned accompanying your partner inside an opposite sex bathroom. Has anyone done that or have any tips to share? Do you wait until everyone clears out first?
Marilyn, several have done the bathroom scene either way, having someone "watch" the door for them. Now, most new places and airports have "family" restrooms that you can both go in. Yes, you wait until the restroom is empty to go in if at all possible!
I find more all the time that the restroom issue is a big (and limiting) one. One reason to avoid air travel. What do you do in stores? I find if I have a cart with things in it that he can "take care of" it helps to keep him in place while I use the restroom.
Welcome to you folly, You're new here, right? I'll make a note on the Welcome New Members page so that others know that you've joined us. If you get a chance, please let us know more about you and your spouse.
Welcome Folly. the bathroom issues have been stressful in my case. i now use 2 depends and plastic pants over that when i leave, and try to get DH (dear husband:) to go before leaving. the instances where i had to use ladies bathroom in a restaurant and a hospital! i just waited til i stuck my head in and asked if it was occupied. then brought my DH in and went into the handicap stall. if someone came in during that time in the stall it was ok. we just waited til it cleared again and left. not the most convenient i can assure you but works when necessary. in the restaurant i had a hostess come up to me entering the ladies bathroom and said you cant take a man in here. i said 'he suffers alzheimers and if you want to take him into the mens bathroom that will be fine?" and i mentioned they did NOT offer a handicap bathroom so i will be using this one. she left and didnt interfer. this situation is most intolerable but there are some places that just dont get our situations yet. more and more AD they will learn sooner than later. Divvi
divvi, in many states the law specifically states that a handicapped person can have a caregiver of the opposite sex in any bathroom with them. I know in California there are signs in some bathrooms stating that fact, but the law exists in other states as well.
starling thanks, that may well be true but trying to get that law across in time of need may prove difficult with ignorants who arent compassionate- law or no law, if the need arises i will do what i can :) divvi
92. If you have a stock portfolio, IRA or 401K, reassess your risk tolerance with it and your future monetary needs. If you have a financial manager, you should discuss your future monetary needs with them. You may be better moving a larger portion of it into bonds or something more stable, securing the money than having it at higher risk of the markets ups and downs as expenses go up due to their care requirements.
93. This is for stage 6.... Fabric stores carry the felt-like wateproof material (like the small squares we used under our babies in their cribs) by the yard. Three feet (and its 1 yard across) will cover spouse's side of the bed leaving room to tuck under at the head and foot of the mattress. When away from home and worried about possible accidents, carry it with you and put it on the bed prior to retiring for the night. That way you won't have to worry about soiled linens.
I second Therrja's comments regarding risk tolerance. After DH's diagnosis, I shopped for a financial planner to compare strategies with what our current planner was suggesting. You wouldn't believe the level of risk one of them suggested--all $$$$$$$ in stock market with no guarantees! It was as if we were both 35 with no disability! Fortunately, didn't sign up with him--stuck with our planner--much better results. Hope no one here was hit by the market's decline--in our position, risk taking with funds can be just the wrong approach.
I was told this tip should be here. From the very beginning, or as soon as Dx has been figured out, work hard to understand communication with your LO is impaired and declining, so you have to change your approach. As well as simplifying you have to recognize their ability to reason is broken so discussion, criticism, and decision making aren't going to work at all well. Start training yourself to RESPOND not REACT to things they say or do. LEARN to engage your brain before engaging your mouth. You will save yourself a lot of grief, when you haven't criticized them and delivered bad news in one breath, because what they said and what they really meant weren't the same. Example: He brought our Boston Terrier OT in, and told me "I brought Chantey in." I responded, 'I hope not, Chantey's dead.'(buried in the side yard 10 years ago.) My reaction delivered the news of a serious loss coupled with unintended criticism of his mistake. I should have said, "Thanks.'or "OT appreciates that."
ALSO, FORGIVE YOURSELF WHEN YOU DO BLOW IT. We are all human and sometimes will just react. We can't be on our toes 24/7/365.
94. At some point (sooner than you think) you will know more about your loved one’s condition than his doctors do. I wish I had known this sooner so I could have quit expecting answers. I had so many questions, like “how long do we have?” and “what should we expect?”, and I never got any answers.
95. I always felt like when this was over I would look back and be able to see very clearly what the right decision would have been at each point. Now that I’ve been doing this quite a while, I realize that sometimes there are no “right” decisions. Sometimes you just do the best you can, and know that each and every choice you make can have results that are not what you wanted.
Somebody told me that “Just because the decision is best for you, it doesn’t mean that it’s bad for your loved one”. I had thought about things as either being good for me, or being good for DH. But every decision is not that way. Some decisions are neutral, and some are win/win, as opposed to win/lose. But even if they are a win for you and a loss for your loved one, sometimes you are entitled to that, too.
Anyone have any suggestions...my spouse is in stage3-4....when should I start thinking about p.o.a?.---when and how do I get my ducks in a row financally? Time marchs on and I want him to be able to get care, but money is an issue --a big issue. This was finally medically diagnosed 4 weeks ago and I am a newbie although I have thought this for about 1 yr. + but now it's "offical".
You should see an Elderlaw lawyer ASAP. Get everything in order while your LO still understands enough to sign the papers. Even if he is beyond that, you should see the lawyer SOON to find out what can be done.
He would never say any papers that would allow he any control. ----And I think the doctors would probably agree that he's still able to make his own decisions, but I see flaws. For example, he was always neat as a pin...now he's sloppy about his garage, his grooming is poor (walks around with holes in his pants), but does manage to dress for church. I would feel okay going on my mini trip for 3 weeks with him alone, but it's getting a little dicey. Does this make sense to any others?