I never used any support (tho I sure could have/should have). But you might want to check with local hospitals in your area, there are some in my area that offer support meetings for caregivers.

Depends on what the illness is. I know of forums that are better then others.

Try the Healthboards forums.

Here is a link that might be useful: Healthboards

I take care of my Dad- he's lived with us for twelve years but lately, the dementia has worsened and I don't know what to do about some issues- how to keep him in bed at night, for instance. Other things. I do know about bed alarms but I need to talk about stuff in depth.

I know there are local meetings but I don't leave the house much and probably won't go.

Bumble - I didn't realize you had cared for your dad for 12 years! That is a long time. It is hard on the caregiver - no matter how good the situation. I'm going through this with a good friend of mine right now.

I don't know about any support forums, but I wondered if you had checked into respite care? I've suggested this for my friend because she is really at her wit's end and just about to the point of total exhaustion. During my mother's illness (she was my grandmother's caregiver), we had to place my grandmother in an assisted living facility. At that point my mom had to take priority and my grandmother was becoming combative with her and the caregivers we hired to assist. Our plan was to bring our grandmother home and have 24 hr. care in the home. BUT, the assisted living has been a godsend! She is doing so well there and really likes it. Her health has improved because she is more active and her attitude is much better, I think, because she is more mentally stimulated. Enough on that, I'm not trying to push assisted living on you - I just wondered if you ever consider respite care to give yourself a break? My friend usually has her daughter stay if she takes a vacation, but her daughter is newly divorced and my friend is wanting to take the daughter with her and her husband on a trip in the near future. The center where my grandmother is provides respite care for up to 30 days.

I know before we decided what to do with my grandmother, we talked with people from the Council on Aging, the Alzheimer's Association, etc. and were given some good advice. Much of this was over the phone. I wonder if you could talk to someone at one of these type agencies in your area for advice on your concerns?

It's hard I know. I hope you get some answers.

tina

I don't know of any forums, but is your Dad a veteran?

The VA provides respite care, adult day care, and perhaps has a department that specializes in Geriatriacs. I know our local one does.

It is a real tribute to you that you have cared for your Dad for 12 years!

Thanks graywings, I'll check into that.
Tina, my dad has never been a problem and we have handled it ok. He has not driven but really, he is the sweetest, kindest man and has no vices so it's always been fine. For the past 12 years he has played duplicate bridge twice a week (he's excellent) and that has been his "outing'. Otherwise, he has been content to watch tv and listen to audio books and sit with us in the evenings.

We have a very simple life and he hasn't wanted anything other than the stability of a routine at the house.
He has also been able to go to the bathroom by himself until last fall when he broke his other hip. He broke the first one in 2001.

I am fine, really, I can hire a babysitter if I need to and I can still leave the house for several hours to shop, run errands, etc. Dh helps as much as he can but since I am here I don't involve him much as he is very busy.

He will never go into a nursing home. We had terrible experiences with nursing homes with my grandmother- 3 different ones - and she lost her leg to gangrene due to a doctors negligence and this was with my mother going to visit her daily! They didn't sue, but I wished they had! Mom said " We aren't those kind of people"

The nursing home sent huge arrangements of balloons and flowers to grandmother at the hospital :-(

Anyway, in 1998-2000- my mother was sick and eventually died at her home. My brother and I took care of her and I do know what is involved.

If I thought a nursing home would be best for Dad mentally and physically, I would do it. But he had 6 weeks in rehab last fall after the hip surgery at a local nursing home- a nice one- and he was very unhappy. He doesn't make friends, like to talk with other people, want to play bingo or really do much other than watch tv, audio books (none of which he comprehends much) and be with family.
He can't use the telephone, get dressed by himself, and lately, not so hot with the cd player.

At the house, we have intercoms and a walkie talkie for when I'm outside in the yard.

I like having him here and I like being at home most of the time ( I do have a job and work at home as an illustrator) but I do have some concerns about handling his care.

He made great sacrifices for years for me and my brothers and I can do this for him. He was always there for me and I will be here for him.

I hope I didn't sound like I was suggesting you move your dad out Bumble! I wasn't at all. I would never place someone in a nursing home - well unless circumstances were beyond my control. Never say never, I guess.

The assisted living facility my grandmother is in is wonderful. Most importantly, she is happy there. Of course, after many visits, I cry. Mainly because she is not "her" anymore, and that is so sad. But mostly I am thankful that she is so happy. She is in the lowest care level villa. We can go in at any hour of the day/night 24/7. They have medical care, wonderful meals and you can't imagine how clean. Luckily, it is convenient to all of us, especially my sister and my dad (who has yet been able to visit her since my mom's death).

My only thoughts were if you needed respite care. I'm glad you are doing so well in taking care of your dad. My friend is very outgoing, used to be out and about, lots of friends, lots of activities, etc. would like to do more with her daughter, etc. I believe they have even given up their lake site now. Not that she complains, I just see that life is very different for her. Her mother is becoming a bit "difficult" and I've even worried a few times about my friend and her own health. I can see where a "respite" might help her.

That's terrible about your grandmother. With your dad being a homebody, keeping to himself, etc. then he probably wouldn't be happy elsewhere. Your last sentence says it all - and I completely agree. This rang so true during my mother's illness and death.

tina

Oh I know you weren't Tina!
Some of my friends are so outgoing it wears me out listening to their activities, while I am happy staying home in the evenings and watching the latest dvd release.

Glad you understood. I'm a mix - an outgoing homebody! I have to have a split of both I guess. I'm a people person. Working part-time and community work fills that need. I get it from my mom!

tina

bumble, you need a bed alarm! Got an alarm for my mom because toward the end she was so prone to falling. She was also quite stubborn about using her walker, she often tried to get up & go without it. I highly recommend the ones hospitals use, it's Posey brand. You can buy the alarm unit (small box) and then buy a chair pad (what I got for my mom), bed pad, etc. Whatever you need. You leave the pads in place on chair, bed, etc., and move the box as needed. It attaches via a phone cord (only way to describe the connection). Box takes a 9V battery. As soon as the slightest bit of weight is lifted from the pad, the alarm sounds. It was an absolute godsend. I got my mom's at a local pharmacy supply house. I compared and it wasn't that much cheaper than what I saw priced online. It was pricey, tho. I want to say about $180 total, but the peace of mind was worth every penny. They make other type pads too, like floor pads, but consideration needs to be taken if there are pets in the house that could trigger it by stepping on it, etc. (I was pretty burned out at that point, didn't occur to me to ask one of the Drs if it would be covered by ins, but it's worth asking.)

And I just wanted to say I know exactly what you're going through. It was 12 years for me too, both parents back to back. (Not Alzheimer's, but DHs father had that, it's heartbreaking.) It's really, really difficult and I heard it time and again: take care of the caregiver. That's easier said than done, but it's so true. I didn't abide by that well, and had a couple periods where I thought I would just collapse. (Literally, I had two full cardiac work ups during those times because of symptoms, & was only in my 40s. It was all stress.)

Also, just for benefit of anyone reading: check with the doctor about home nursing visits. (It's usually ordered & covered by Medicare immediately following a hospitalization for patients that need assistance or don't ambulate well on their own. One time it wasn't ordered, and we asked and got it. ~OR~, if therapy/activity is needed and it's hard for the patient to be transported out, etc.) We had a weekly RN that came after every hospital discharge to follow-up, a twice weekly LPN that helped with showers/grooming, and a 3x weekly physical therapist. 6 weeks was standard post-hospital. Sometimes that was extended, sometimes not. However one time my mom was doing quite badly, but by then the doctors goal was to keep her out of hospital (older patients get too weak lying in bed all day, it's a major set back. We were told at our age, for every day in hospital it's a day to rebound at home. By our parents' age, 70's+, for every day in hospital it's 3 to rebound at home.) So her M.D. ordered physical + occupational therapy at home. We used the same agency, God Bless those people, they were angels. It wasn't constant, but when they were there, it was a tremendous help and support. If you can come up with the funds, even a part-time in-home caregiver to help you get breaks is worth it. (Your local hospital would be a good resource for agencies.)

I'll stop there. But if there's anything at all you ever want to talk about, even just to vent, please do feel free to email me, OK?

I found a board, it looks quite active: Alzheimer’s Association Online Community

Lots of posts while I was typing. I am rushing, so didn't get to read but skim them. Hope I didn't repeat things you already know. If so, maybe someone else can benefit, too.

You sound very much like me. ;)

I have to go out for awhile...I'll reply later!

"He made great sacrifices for years for me and my brothers and I can do this for him. He was always there for me and I will be here for him."
Bumble and moon, I just had to tell you how your stories of taking care of loved ones has so touched my heart. The above quote put tears in my eyes.

Sent you a few links via email

Roselover- thank you so much! I will check those places out.
i know you have had a time, too.

Leahcate- Thank you! That's encouraging to me.

Moonshadow, I really appreciate your post and understanding. I have thought about a bed alarm but he has a king bed, so it would mean a new bed and then, I'm not sure I would get downstairs fast enough before he got up. Last night he had TWO Tylenol pm's and I thought that would help him sleep through the night...but no.
Physically, he is capable of getting up and going to the bathroom, but his aim is off. The other day I came down in the morning and there was a huge pool of urine on the floor.
I would rather get up in the middle of the night and help him than clean up the floor the next morning.

The poster sized sign taped to his walker that said "Sit Down! Get back in Bed" was laying on the floor.
He could not remember anything.

I have not used Namenda but I am going to start him on it.

Glad to be here, just want you to know you're not alone.
leahcate, that's very sweet of you to say. ;)

The bed size pads are good size (covers from shoulders to waist easily). If he only gets out of the bed on one side, it could still work. Or maybe put the bed against the wall so he has to get out of bed on one side? (The alarm does trip if there's no pressure, then pressure, then none again.) Although on second thought, in that large a bed, if he rolled on & off the pad he'd be tripping it a lot. I'll keep thinking, maybe someone at one of the forums has resolved that issue. (My F-I-L had Alzheimer's, they ended up getting a hospital bed with rails. Tho you can just purchase rails. He was getting advanced at that point and it was necessary.)

I did a quick google (they have something for everything it seems. ;) There are floor mats, like this one. That might tide you over till morning. My mom wasn't on sleep aids, but was groggy when she woke up. Nights were the worst. (Pre-alarm days.) I used night lights + motion sensing night lights + safety rails and she still took a couple nasty falls. I ended up buying a couple little 'personal alarms' for about $5 each at Radio shack. Fixed it so she could wear around her neck and simply pull it at night if she needed me. My stomach knots up just remembering the falls, she was on blood thinners & taken off because of it. :/

I found for home health aids, Amazon has a staggering offering. And for customer service, you can't beat Moen. (They make really nice safety rails for bathrooms if you ever get to where you need something like that, Lowes carries a good selection.) I bought a Deluxe bath bench on clearance, opened it up to find it had no back. So I emailed Moen to see if they'd send me one, because my mom loved that bench, and no stores around here had any in stock. I got an email back from a CS rep that he'd take care of it. Two days later I was amazed to discover an entire new bench delivered to my front door, no charge. And they were over $100 retail. Nice people!

Moonshadow, about two weeks ago, when this first started- me helping him go to the bathroom in the middle of the night and him having very specific instructions to call me- I heard a noise downstairs in the early morning and found him on the floor in the bathroom. Then, I had I hope the first and last, panic attack. I had the adrenaline rush to lift his 200 lbs up and get him back on the walker. When we got to the bed, he fell over and I had to leave him there. I made it back upstairs, collapsed on the bed and told dh " Help Dad!"
I thought I was having a heart attack.

I don't know what to do yet but I will figure it out. You are very helpful!

Tonight, no Tylenol. Maybe it is increasing the dementia. i don't think he has sundowners.

Sounds like a really hard situation, but also very heartwarming you are able to do this for your dad.

Could you rig something up that would make noise, something like put a bell on his walker only at night if you know he for sure uses the walker. I assume you have a baby monitor or something so you could hear it.

BTW speaking of baby monitors it might be an option. There is one called Angel care that senses movement in a baby and will sound an alarm if there is no movement. We used it with my near term preemie to help warn us if she stopped breathing. It can be adjusted to very sensitive. If we forgot to turn off the monitor and we picked her up the alarm would go off. I can't remember the time frame on how quick it is but maybe do a search. This means if it didn't sense movement as in your dad left the bed it would alarm. It did require a hard surface under the mattress though so it may or may not work. With a baby they don't weigh much so a masonite board was good enough. Maybe you could buy one from somewhere with a good return policy and test it out.

Oops sorry none of my solutions works to warn you before he gets out of bed. They'd only work if he continues to be capable of getting out of the bed himself.

Bumble, I have not heard of that medicine. I am going to talk to my sister about it (she is a nurse educator and my grandmother's medical POA - I am regular POA). My grandmother is on Aricept, but I honestly can't tell it has done much. Of course, it was possibly started too late and she is soon to be 94. It wouldn't hurt to check out an additional medication.

tina

Thanks y'all. Thanks Tina, I would like to know more.

I went on some of the caregiver forums. EEK!
Not anymore. Talk about depressing...I felt anxious and worried after reading for 30 minutes.
I had to come back here and read about curtains and furniture :-)