I am not sure how to proceed anymore in caring for my husband. I've spent the past four weeks going with him on his multiple walks and I'm exhausted. I'm finding that he's becoming more demanding and insistent and there's absolutely no reasoning whatsoever. Sometimes I can put him off for an hour, but he just keeps asking when we're going to walk. I'm ashamed to admit that I've screamed at him several times during the past few days and he just says he doesn't understand why I'm raising my voice. And the really sad part is I feel absolutely no compassion for him -- it died a long time ago. I checked out one assisted living place yesterday, but they won't take him until he's 65 and there are currently 78 people on the waiting list. The cost of so many of the dementia units are so expensive I could only afford to have him in one for about six months. He still functions well with bathing, dressing and eating, no swallowing issues either. Some days I think he's more psychiatric than dementia, but I'm thinking he may be more FTD than AD. I know he needs more structure than I can give him at home. I'm really at a loss as to what to do. He just came in demanding to walk again -- I let him walk alone twice today. I'm only walking with him so he won't walk into someone's house like he did four weeks ago and he has no memory of that. I'm so depressed, the house is a mess and I just don't care. I suppose if I let him walk alone I would be charged with neglect and I don't even care about that. Someone needs to take him off my hands -- I can't stand the manipulation and lack of caring. I know it's the disease, but I still don't care. Sorry to be so dramatic -- I'm just so tired of this.
Also forgot to add neuro put him on Depakote about 10 days ago. I took him off because it seemed the repetitive behaviors are worse. Won't be able to get him into a psychiatrist until July 22. Added a day of daycare, but that doesn't seem to help -- he's asking when we're going to walk again as soon as I pick him up. This is insanity!
Elaine K, I'm so sorry. I wish I could offer some suggestions for you but I am fairly new here. I do know that everything is so unmanageable when you have no rest. I'm sure someone will come along to offer some suggestions, but until then I can only offer you my sympathy. Do you have any family nearby to give you a break, even for a short period?
Elaine, I don't know if your DH would become aggressive or not, but I would put deadbolts on the doors and say we cant walk at this time due to any reason you think he would believe. its sounds like the walking is more obsessive compulsive at this point and its the things hes dwelling on at this point. try something he likes maybe ice cream or cake or anything to distract when you think its the time he usually wants to go out. with all that has happened I don't think its a good idea to allow him out alone since hes capable of going into houses uninvited. I know you don't want to walk with him so you need to approach this cautiously but in a way that he has to understand there is no walking at this time but maybe 'later'. if you break the habit it may go away at some point. he has become fixated on the walking of course now. and if it were me, I would ask to try something else as far as meds to keep him compliant and not so ansy during this pacing time. pacing is a real phenomenom with AD, mine would go round and round the house working up a sweat til he literally would exhaust himself. so yes sounds like this is part of his obsessive disorder. tell the dr the issues at hand that he is continually wanting outside and he can no longer go alone due to the previous serious incidents. and ask for another med that may be of more benefit. but remember some of these meds need a week or more to work into the system to work. it may be the Depakote needs more time and once the body tolerates it more. if not call the dr and scream for help. maybe a drive in the car instead once a day at an off hr would do instead of walking all the time. if he gets ansy and over distraught I would give him the meds at the walking time to sooth things down. it may help you get thru this transition period. good luck and if one med doest work ask for another!! there are many to try. maybe even Ativan to help sooth the walking times.. many of us use Ativan for ansiness it works well for most. divvi
He is a danger to himself with this compulsive walking. It is either keep you eye on him at all times, lock him in or risk him taking off when he gets tired of waiting.
My FIL was a 'runner', had to always be walking or out for a drive. My MIL literally exhausted and killed herself from this. It is so sad that she refused or did not look for help - she might be alive today. My SIL is the same way and had to be put in a locked facility. For her she lived by herself where her daughters kept an eye on her. My husband wants to walk 2-3 times a day. Fortunately I can tell him how hot it is right now (been over 100 the last few days) and he will agree not to go. When it cools down he will want to go again. I know I need to walk but I don't want to walk with him. He stays in the park when walking and as long as he does that we are fine. It is when he tries to leave the park the next phase will have started - wandering.
don't wait to contact the doctor - do it now for your own health.
Thank you all for your suggestions. Today is a new day (more or less) so I'm working at really keeping him on a definite walking schedule. I told him we're walking every two hours. We started at 8:00 a.m. and did our second walk at 10:00. Noon will be the next one and then every two hours until 7:30 p.m. being the last one. So far it's working.
Divvi, I have thought of deadbolts on our doors, but I'm not sure how DH would react to that. Back in December, 2010 he was hospitalized after he passed out (looked like he had a seizure) and after I left the hospital to get some sleep, he wanted to leave and when told he had to stay, he tried to get out. Security had him in a headlock until I authorized restraints. So I'm a little leery as to restricting him to that degree. I have taken him for rides in the car in the late afternoon for about a hour, but of course he wants to walk as soon as we arrive home. I think he's just so confused that all he really knows is our home and our surrounding neighborhood.
Because of the holiday weekend, I'm holding off on calling the doctor, but I originally asked for an anti-anxiety med and instead I got Depakote. I'm really trying to hang on until the 22nd when he sees the psychiatrist affiliated with the day program. I almost wish he could be admitted to a geri-psych unit for evaluation. I'll see what the psych says.
Thanks for the support. I'm trying to hang in there the best I can. Hugs to everyone!
There was a treadmill that only moved when the person "on board" was walking that was used by residents at an ALF where my sister lived. Is that a possibility?? Good luck.
I really feel for you Elaine. We never had this sort of compulsive behaviors. I will admit if it was me I would be talking to his doctor about medicating him. It just can't be healthy for him to be so antsy all the time. You are reaching your limit, rightly so... Flo I have the same type of treadmill, I think it would be safe. Better than walking into strangers homes for sure. Another thought, if he is sticking to the schedule, can you trick him by changing the clocks?
Can you call to see if you can get him seen before the 22nd?
Elaine--sounds like a stay in a geripsych unit should be considered asap. Don't wait until the 22nd--contact the psychiatrist and say that he needs to be seen sooner. A concrete dx would certainly help determine what course to take as far as meds, and you sure sound like you need a break. I know that Depakote is actually an anti-seizure med, but it has been studied for use to curb agitation in dementia patients, and my husband was in a clinical trial. However, he had to drop out because it upset his system--I'm not sure what the results of the study were, I didn't follow it after Steve stopped taking it.
Elaine, Depakote is an anti seizure drug but does work in many people with dementia in calming them down and reducing agitation. DH was on Depakote but had a bad reaction-high liver enzymes, so he could no longer take it. He is now on large doses of Neurontin which is also an anti-seizure med. It has been effective in reducing agitation and anxiety in conjunction with Seroquel and klonopin.
It really does help to have a diagnosis so the dr can treat the patient appropriately. My dh has FTD and many of the drugs used to control agitation/aggression and memory loss for people with AD do not work, or even worse makes the situation/behaviors much, much worse.
BTW, the walking is obsessive/compulsive disorder probably in conjunction with sundowning. Call the dr and demand he/she give you something to deal with the ocd behaviors.
I'm with you....we have our own situation brewing with his return from rehab.
Oh how emotionally and physically draining this must be. Please contact his doctor immediately and explain the situation (as you have us). This is not acceptable for either one of you. His medicines need adjustments. I hope that your doctor is a good advocate on your behalf as he needs to be aware of this OCD.
Again, thank you all for your support. I called DH's neuro yesterday and begged him to prescribe Ativan and he did -- just .5 mg 3x per day. That is helping a little bit. Trying to get DH to stick to a schedule didn't quite work out. So I just keep walking with him -- maybe I've been too dramatic about it all because the walks are only 10 minutes long. But it does disrupt whatever I'm trying to do.
Getting him into the psychiatrist sooner probably won't work -- I was lucky to get him in for the 22nd. The doctor wasn't taking new patients and then I got a call that some slots opened up. I really just want to wait until the 22nd, since this doctor is affiliated with the day program DH attends and I think it might be easier on DH.
In the meantime, we've been taking car rides to curb some of the walking and even went to a movie this afternoon -- saw "The Heat". Language is awful, but I haven't laughed that hard for a long time. Even DH liked it and laughed at some parts.
Well, I've finally decided to take matters into my own hands. Just called a behavioral health hospital not too far from us that had an older adult program and I will have my DH evaluated. I can't wait another two weeks for him to see the psychiatrist at his day program. I'm tired of walking and I've been letting him go alone again. I know I run the risk of being charged with neglect if I continue to let him out alone (and he always comes back -- just like a dog!). So I've got to do something -- called the nurse at his day program and she still hasn't gotten back to me.
Good luck Elaine, glad you took the initiative to find another resource. The behavioral health hospital should be able to evaluate and prescribe, but it may be trial and error. Anyway, it is a good step and hopefully will help you deal with the walking.
My Lloyd was a runner. Any chance he got, he was out the front door. I used to go after him with the car and it would take forever driving beside him with my emergency flashers on to get him in the car. Then I started just walking with him. Eventually I could get him back home. Ultimately we got the double keyed deadbolt on the front door. Did he like it? Nope. Was he pissed off? You betcha. BUT it was so-o-o worth it. He actually pulled the doorknob off the door trying to get out. It was one less BIG thing to worry about. Mine ran into traffic on a main road and almost got hit 3 times in less than a minute. Early on there were the search parties looking for him. He would attempt to go home to his mama in the next town 8-10 miles away...almost made it once. Then he started going to my son's 6 blocks away. That was a relief until my son said one day "I am so afraid I will find him frozen to death on my back steps one day when I leave for work" and Nick just cried...so we had to do something.
lindamc I can so relate to the runner issue. mine was almost parallel to yours in this aspect. would be out in a flash and traveled at a speed that was astonishing. I remember as well trying to coax him into the vehicle while riding next to him. what difficulty. my wakeup call was we were at the gym and he was able to use the equipment. I went to use another apparatus and he was within view. I looked away maybe a minute and he was nowhere in sight. of course we lost valuable time but searched the entire facility. he was found in his shorts in 100deg weather over a mile/half away. in about 30min. time. what a nightmare. folks it can happen and you think you have a handle on how much you know about them. not. when the urge to leave hits they are very crafty. the panic one feels is overwhelming. I hope none of you have to go thru it but yes it can happen in a flash.
Elaine, good for you being proactive in this now. I sure hope you get some help to get this walking ocd under control. I cant imagine having to go out every 2 hrs. divvi
Lloyd got out once 5 months before he died. Someone had left the front door unlocked. In just under an hour he escaped, was picked up by the police, taken to the ER, found by me, picked up at the ER, and back home. There were never any consequences. I suppose if it had taken significantly longer for all this to transpire, someone somewhere would have had something to say. I got to the ER and they already had a heart monitor on him. He was barefoot and I asked "Did anyone bother to check the bottoms of his feet?" No....duh.
Just a little update on trying to get my DH into a psychiatrist a little sooner. My trip to the behavioral health hospital was in vain. The intake person interviewed him, then me. She actually had someone watching him while she spoke with me and when I returned to him he was waiting in a hallway, not in the waiting room. At any rate, since he wasn't bouncing off the walls, he wasn't a candidate for admission. I was given the names of two geriatric psychiatrists I could call. At this point, I've decided to wait for his scheduled psychiatrist appointment on the 22nd. I'm trying to keep everything as local as possible at this point. Also the psychiatrist he will be seeing comes with a personal recommendation. I have a very dear childhood friend whose husband is a retired geriatric psychiatrist. I called him to see if he knew anything about this doctor my DH will be seeing and it turns out that my friend's husband actually trained this doctor during his geriatric fellowship. So I do feel good about this doctor.
I've been giving my DH the Ativan and I think it is helping a little bit. The worst times are in the afternoon and sometimes he won't take no for an answer. Right now we're dealing with lots of mosquitoes and walking in the early morning and evening is awful. I'm ready to start calling a few home care agencies to see if I can find someone to walk with him in the afternoon hours.
So my daughter and I are surviving the best we can. I just wish I could turn him back to his old self -- I know I can't, but it would sure be nice to have him back again.