Hello everyone.
I am new to this site and would very much like to discuss some of the issues and concerns that crop up each day. A bit of background: I'm 78 and my husband of 82 has had AD for 16 years though it's been only the past few months that symptoms have increased. He can still read (a little) and remembers people; on the other hand he has to be guided, often, to various rooms in the house that has been our home for 20 years. Until a month ago I was the sole caregiver, along with unqualified emotional support from our four adult children, none of whom live nearby. Now I have a man come in once a week so that I can go to a yoga class with peace of mind. My husband is very self-contained, has shown no inclination to wander; in fact it's quite the opposite...he pretty much stays where he is. He is extremely passive and seems content to simply set. The crossword puzzles that once diverted him are of minimal interest. I would so much like to know how other caretakers handle their situations. Do you leave your loved one alone for short periods of time; do you try to stimulate activity (and, if so, how and what?) Doug, my husband, has always been a very introverted man and the thought of putting him in a day care program doesn't seem right to me. I'd be grateful for any and all responses.

Thanks, blessings, and peace.

I don't leave my LO alone except for maybe 5 minutes to run to the laundry on another floor of our apt complex.
He might enjoy daycare more than you would expect if you don't call it daycare- you could tell him that he's working or volunteering and try a half a day or two a week. I take my LO out A LOT. We go to malls, parks, petting zoos, something almost every day because she seems to like to get out. You could try getting him to help with household tasks like folding towels, drying the dishes, etc. I'm sure others will respond with different answers.

I second what Jellybeans said: He might do very well in daycare (even if he denies it). Just don't call it that. Say he's going to work or his senior center--whatever sounds like somewhere he used to go. Try a day or so a week and see how he does. A good one will make an effort to engage and stimulate him and give him some exercise.

And when you are home, have him help you: Folding clothes, chopping veggies for dinner, setting the table, counting coins, re-arranging contents of drawers (my mother re-folds and organizes her sock drawer endlessly). Repetitive and easy tasks work best.

Don't let him just sit. He needs some exercise so go places, take short walks in your neighborhood, go to malls, concerts, out for ice cream or donuts. Nothing horribly strenuous and not for very long, but get out regularly. (Be prepared for him to say he doesn't want to go; they often do.)

Frankly, you have to get to the point where you do what you feel is best for him and ignore what he says are his preferences. Because ADs often "prefer" to be left alone to sit and stare or nap, since cognitively they can't remember how to do anything anymore so even getting up from a chair is too hard. Good luck and let us know how it goes.

DPN,
I too do something daily with my MIL and dad...always a walk in the morning and evening and usually a car trip to the grocery store, mall, thrift store, ice cream at McDonalds, watch a sunset, zoo, free museums, library, dog park. Moving is necessay...to keep bowels moving, blood circulation, preventing pressure sores

At least check out your local ADC, some of them are set up for quiet activities for the more reserved folks or ones who need a quieter setting so they don't get agitated. The one MIL went to wasn't so it wasn't a good fit for her but I know there are other's out there that really work to have a place for all the behaviors AD folks might have. For my dad, he's more aware but likes to have friends visit, one on one...so we try to arrange that a couple of times a week. Right now my husband is picking up subs and is going to watch the football game with him.

I used to be able to leave MIL home for short periods of time but wouldn't even think of it now...somedays it's even hard to leave the room she's in but you know your husband best...and there's a saying, "If you've met one person with Alzheimer's, you've met one person." Meaning it affects each person so differently. If he can get lost in his own home though, it's probably not a good idea.

I hope he stays "happily, passively demented" but don't be surprised if, as the disease progresses, that he does get agitated, especially in the late afternoons and evening time. That will be the time to talk to his neurologist about medication, usually an anti-psychotic. Start reading about them now...it can be a scary but necessary step.

There have been studies that say AD takes more of a toll on the caregiver, YOU, than on the sufferer...remember TAKE CARE OF YOURSELF. You are so smart to be taking a yoga class!!

"The 36 Hour Day" is a book full of good advice and the Alz.org 1-800-272-3900 has someone available to talk to 24/7.

And then there is this forum...

Peace

Welcome to the forum!! You say you have a man that comes in once a week to stay with your husband while you go to "yoga",,,good for you keeping up with something that you enjoy!

What does this man do with your husband while your'e gone? If your husband enjoys his company,,,why not have the man come in a couple of times a week,,then you can get out a bit more.

Also,,another thought here,,,how about if this man were to take your husband to a nice daycare for lunch,,and he could observe how your husband does at lunch,and with interacting with some of the other "guest's " that are there.

This man could tell your husband that this is a new Senior Social Club that just opened up,,and he thought that maybe he and your husband might enjoy having lunch there and seeing what the place is all about. This would be a great way to get your hubby acclimated to daycare.

Just some suggestions on the possibility of introducing your hubby to something new.

And yes,,its very important to keep your husband as active mentally and physically,,as possible,,its just good for him. If he doesn't like his crosswords anymore,,its all those little squares and his visual perception is declining.......

But he would try doing some puzzles,,set up a card table with a good light,,,try playing the game Connect Four,,you can buy it at Walmart or other stores in the games section. This is easy and fun,,simliar somewhat to checkers,,but easier. I play with my Mom and her roomate,,even though I have to constantly show each one to drop down the slot! haha. Its ok,,they get a kick out of it.

What were some of the hobbies that your husband used to enjoy before he got ill? Maybe he could still do some of them,,even if its slower or not quite as accurate.

Also,,music that you and him love,,play music alot,,,everyone loves music,,it lifts our spirits and makes us happy.

Pull out the photo's ,,,have him identify the people and places where the pictures were taken.

Give him some simple chores to do,,such as raking leaves,,,pulling weeds,,well maybe not that,,he may pull your "plants".

It sounds to me as if you've done an amazing job for a long long time with your husband. I'm impressed that he's had AD for so many years,,and is still so functional,,,thats wonderful.

I think that "I would not" leave him alone while I ran errands or whatever,,cause our LO's can change rapidly and suddenly,,unfortunately.

Also,,,notify the Dr when you notice any changes in the daily routine of things,,your husband may now simply be progressing a bit more into his illness,,,but perhaps his medications need "revamping".

I wish you the best,,so far you sound very successful in your care of your husband,,I wish you continued success. Peace

I need to work (from home) so my LO and I interviewed several potential caregivers and chose three. One of them is handling most of the schedule now. I'm paying $9.50/hour (before withholding taxes). I'd pay more if I could afford to, because the caregiver is wonderful. All my LO needs right now is minimal supervision (for safety, nutritious meals, and medications) but the interested, affirming companionship is priceless.

I do let my LO take a brief walk outside, just outside the house. We have four acres, and the walkway is far from a road or neighbors; also, I can glance out the window and see her.

Thank you, thank you, thank you for your responses. Some of your suggestions I've tried but will revisit them. I've talked with our doctor about day care and she doesn't think it is appropriate for him now. My daughter and I did visit the center just to check it out ourselves. Staff is wonderful but when we described Doug's condition they thought we should wait a bit. I'm going to find the game Connect Four and play that with him. It feels so good to know there are others out there who face the same choices and challenges each day. Please keep in touch.

Blessings and peace.

Good ideas here for all of us. Even though my husband has never been a gardener or a cook, he gets a kick out of the few veggies I plant in the flower bed here at our condo. He likes hunting for beans that are ready to pick and looking for the cherry tomatoes that are red enough to eat. One good thing here is that you can tell the same joke several times a day and it is always appreciated. Mine is that I will know he is completely "gone" when I can sneak the tomato on his plate and he will eat it, forgetting that he doesn't like tomatoes! He is also able to walk the path around the community lake that adjoins our place. He carries id and people know who he is. I asked my support group leader (very experienced in AD) about leaving him alone for a time. He doesn't wander, still reads, just lost driver's license. She asked if he could/would get out if the house caught fire. Yes. He could/would help the neighbor too. No, he isn't likely to set the house on fire. Doesn't cook, doesn't smoke.

I'm not pushing the senior day care either for my husband. Maybe I'll change my mind. I call friends of his to come once in awhile. Sometimes two of them come together and carry the conversation. My husband just enjoys being with them and they remember who he is.

I like to get him out with people so he doesn't get more reclusive. I can see him isolating more and more. Like the others here we go walk downtown or at a mall (he wants to walk about 10 feet behind me like a little kid but I don't let him).

I hope you will have the caregiver come more often. You need to re-charge your own battery!

Welcome to the forum, My hubby has been going to day center for almost 4 years. He loves and when Sunday roles around he is anxious for Monday so he can return to the "place". When at home he watches a lot of sports on tv and over the past couple of years has had a steady decline in cognition..I never leave him alone in the house.

He is now pretty quiet and sedentary. When I go to the store he likes to stay in the car. It is the only time I leave him alone, since he has no sense of direction he has no desire to venture out of the car into unfamiliar surroundings.

Yes, it sounds as tho you have done a great job. My hubby is not longer able to do read, write or help with chores. But he still has a sweet disposition and a wonderful smile. He also has a male caregiver who takes him out for coffee, rides in the car where they listen to old music. You are fortunate to have him and should take full advantage of the gift.

Good luck with your journey.

Sort of a frazzled morning. We had overnight guests, friends of long standing, and that was a treat. But these same friends had stayed with us in June and clearly were shocked at changes in Doug. The AD issues have been compounded by the still-undetermined hip pain that's been plaguing him since mid-July. One possibility ahead of us is that the incision from his hip replacement (Feb. '07) may be reopened so that scar tissue can be reamed out. This is a relatively simple, in/out surgery but any surgery for an AD patient has its problems. Until he can move with greater ease caretaking is more difficult. I had grip bars installed this morning on the door between garage and kitchen so it'll be easier to get him and out, and we can go for rides, etc. Yesterday I left him home alone for an hour and a half, calling in twice. I had set up an old Peter Sellers film and he enjoyed watching that. In the back of my mind, though, there is always the anxiety about him in spite of our geriatrician telling me he's okay. This is probably all part of the caretaker's role, a role I both accept and resist.

It is such a help just to jot down these thoughts. Now I must go back to Doug and see how he's progressing with his sponge bath.

You know,,,I have a suggestion for you,,in the event that your husband may need any future surgery,,such as having to remove scar tissue on his hip,,,

My Mother is most likely going to have to have a "bladder suspension" and I've read alot about putting someone with AD under anesthetic,,so I told her Dr that the only way I would consider surgery is if they would do a spinal anesthetic,,where Mom would be awake during the surgery,,but be numb from the waist down and not feel a thing. He said yes,,thats absolutely a possibility of choice!!

Soooo,,in the event if your hubby should need to have surgery,,you may want to speak to the surgeon about doing that,,rather than the traditional "sleeping" anesthetic.

Just a thought I wanted to share with you. Peace

quote:

Originally posted by Raven:
You know,,,I have a suggestion for you,,in the event that your husband may need any future surgery,,such as having to remove scar tissue on his hip,,,

My Mother is most likely going to have to have a "bladder suspension" and I've read alot about putting someone with AD under anesthetic,,so I told her Dr that the only way I would consider surgery is if they would do a spinal anesthetic,,where Mom would be awake during the surgery,,but be numb from the waist down and not feel a thing. He said yes,,thats absolutely a possibility of choice!!

Soooo,,in the event if your hubby should need to have surgery,,you may want to speak to the surgeon about doing that,,rather than the traditional "sleeping" anesthetic.

Just a thought I wanted to share with you. Peace

My mom had two bladder suspensions and they were both hard to get over. It's a pretty graphic operation. My OB/GYN wanted to do that to me when I had my hysterectomy and I'm glad we decided not to. There used to be a website, I guess it may still be around. Go to Pelvic floor.com and it has an actual bladder suspension operation. You might think twice about it once you see it.

Although I am new to this forum, I must second what Raven has said. My Dad had to have an aneurysm replaced on 8/3/09. Prior to surgery, he was about Stage 2 Alz. Post-surgery, he is now Stage 5-6 Alz, & doctors keep saying there's no way he can recover from it. So now, suddenly, he is unable to live alone, drive, or manage his own affairs. & it's only NOW that the doctors tell us, his kids, that this "happens a lot to senior citizens". Would have been good to know BEFORE doing the surgery!

CanaryLuvr

he might like daycare..as mentioned tell him he is goign to senior center..the socialization just being around people might help him..It does not hurt to try..Then on those 1 or 2 days it gives you a bit of a respite to do something for yourself or any errnads you need to do...let us know how it goes..

Two quick things. First re: Daycare, this is a quote from my mom regarding going to daycare that was so revealing it broke my heart: "You know I like it there, no one expects anything of me." Made me realize at the time that I was trying to get mom to be the "old mom"; the one that didn't have Alzheimer's and the Daycare staff understood this disease and knew how to make mom feel good about herself.
As far as a spinal, check with the anesthesiologist and see what his/her feeling is. With mom they said inserting the needle into the spine and needing her in the exact right position was often difficult with an Alz. patient and that the side effects (horrible headache and vomiting) almost always accompany a spinal and can last for some time. He said it was extremely difficult on patients with dementia.

Thanks for your responses. We see the orthopedist Tuesday and will make some decisions re the surgical procedure and what kind of anaesthesia will be used. Right now just dealing with today. Doug fell early this morning, fortunately on a carpeted floor. His left leg just gave out from under him even though he was using his walker. I knew the signs to look for and when I was sure he was okay, with the help of some pumped adrenalin, got him into a chair. Had no luck reaching either his primary care doc or the orthopedist...frustrating. But we got through the day and even had some quality time when I dragged out a book of family memorabilia from his mother's family and we read things together. Tomorrow our caretaker is coming in for the morning and that will be a special relief. How do you all cope with the stress? Are there particular things that help do you, like me, just go with your gut day by endless day.

Blessings to all.

It's been awhile since I've written to you and our situation has changed considerably. My husband went through a really painful stretch when walking was virtually impossible. Strong pain medication (Fentanyl) relieved the pain but had a devastating impact on his cognition. It's been determined that the basis for the pain is severe deterioration of his lower lumbar spine and he'll have two spinal injections that we hope will give more permanent relief but no one can promise anything. In the meantime he's off the fentanyl but taking prednisone daily. I've been lucky in finding a 51-year-old man willing to come in 4x a week to help with bathing, dressing, etc. Sometimes I have the feeling we live in a bubble removed from the real world...that we're just floating by waiting for events to happen. That probably sounds silly or stupid or both but so many changes have come so quickly it's hard to absorb all of them. My husband is such a wonderful human being and I want desperately to help him.

Peace,

Sing ye