Reading the "no sleep" thread reminded me of this great question that my Alz Assn mentor would always ask caregivers regarding placement.
I think it's a great question. We need to think ahead about the timing of placement and what type of event(s) would make the decision the best one.
For me, it was always if my husband didn't allow me to have a good night's sleep on a regular basis. However, due to Trazodone (for him, not me), that never happened. So I adjusted my line in the sand to "when he doesn't recognize where he is", which was exactly what did happen.
If you haven't thought about a line in the sand, you run the risk of complete caregiver burnout and/or a tramautic event forcing placement in crisis--never the best option!
I am knee deep in the sand right now and looking for the my shovel!!!!! My dh has taken another turn for the worse.
Not sure I will even be able to get him out of bed this morning. Yesterday was a nightmare for me. Hospice said he should not be allowed to walk even with his walker anymore and should be put in his wheechair. Also he has lost more weight...down to 128.
Monday I will be checking out 2 or 3 Board & Care places that are close to my home. I do know I can't take care of him if he is bed bound. I am too small and too old. He still is not incontinent and that is the only good news, but Hospice told me to put him in diapers, etc. anyway...which I did yesterday and he never made a fuss or anything. He is so much worse in the morning then in the afternoon.
If I can't get him out of bed into the wheel chair this morning I am to call Hospice and they want a nurse to come and check him out. I am going to let him sleep as long as he wants to and forget breakfast. He sleeps most of the time.
Rather than a line in the sand, I am keeping my head in the sand!
I think in my situation, it might be the physical deterioration due to MS that would lead me to placing him in some type of facility. We went through a month at home where he was bedridden. It was a miracle he regained some mobility - which allows him to get out of bed, in/out of shower and toilet. I know if he continued being bedridden, I probably would have had to make a decision to place him as it was too much for me. Perhaps, though, I would have had an intermediary step, with aides on weekends and evenings in addition to the ones who are here weekdays. Hard to say ...
Mentally ... I guess I would say when he no longer recognizes me or family.
Don't know about this one. My DIL told me last week I should get someone on a regular basis to come in and help so I could get out. Well it's my house and I don't want to "get out". I'm sure others recognize my burnout more than I. DH doesn't recognize this house we have lived in 26 years - he wants the other E. to be here. I'm E. He is mobile and not incontinent but confused beyond belief and as I put in another posting wanders at night and doesn't sleep well. When he comes to the place he is in bed all the time I'll have to either have 24 hr. care or place him but that is not now. Decline can come rapidly as I've come to know.
I always thought I would have so much more time. I have to tell you, even though I did my reseach and planned ahead, things sneak up on you. I had planned on an ALF. Tried to pull DH up and wound up with a fractured neck and severe arm pain. So there went the planning. Thank goodness they accepted him immediately. He didn't have a clue about what was going on. I told him it was a Hotel for people who couln't be alone. I lied, and said he just had to stay until I got my neck fixed. But I guess it's never soon enough.
Violence is my big one. He became verbally abusive to my granddaughter and grabbed her arm.....well the grandmother bear protective rage came out of me....I verbally went after him and he jumped up off the couch and came after me and started yelling a couple of inches from my face. I never backed down....something I learned with working with the criminally insane. Don't let them see you're afraid.
When granddaughter was gone and he had calmed down we had a serious talk which I told him that violence and any kind of abuse was a deal breaker for me. He would be gone in a heart beat. I refuse to get hurt or allow him to hurt anyone else.
I don't know what my line in the sand is-I lived with the violence early in his disease and just coulldn't place him then. Now he's up most of the night and that's become difficult since we have a live-in aide who is supposed to have 8 hours of sleep each night. The agency is telling me if he continues to be up all night they will require me to have 2 aides on 12 hour shifts. That will most likely be the breaking point because I will not be able to afford $400.00/day on aides plus food for them. Until this situation I always thought I would place him when he no longer recognized his home or he no longer knew who I am.
I too hear from time to time I should "get someone to help so I could get out" but who is that someone??? And I don't want strangers in MY house. We went through hell with my folks and caregivers and theft and laziness etc...I long ago lost my sense of trust in anyone in my house when I am not here unless it is one of the girls or my BIL.
I have to think about this line in the sand too..I don't know ...I keep saying when he no longer knows where he is or recognizes his house, gets lost in the house OR requires medical care for his other issues that I cannot manage. But there are days when I want to run away..far far away and never look back..I am sick of being a puppet that has to dance to all the tunes but mine..( meaning all the endless appointmemts, errands etc and then getting arguements when I get sick of answering the same question over and over)...and to be honest, right now I am seething with anger at the girls who are always full of jolly news and yet never give an inkling of when they might work a visit in to see their dad...fun has to come first....or their time table.....ie..I want to skype tomorrow at 6 my time but that is 9 hours earlier so it would be 9 your time..she knows that on Sunday that is the time DH watches Mass on TV but today he just said to call when SHE wants.
Amber- I get the rages mostly in the night when I'm trying to "reason" (foolish me) with him to get back in bed. I never back down when he puts his hands on me but try to calmly tell him to stop right now. I do tell him I'll call the police or the EMT or whatever pops into my head. I won't because I've read on this board what all it would involve should I ever even take him to the ER because of his rages. I'm not really afraid of him but who knows? It is the pits!
I saw theft with my granddad years ago and this was by family members. I guess they thought they'd get it when the old guy passed anyway. DIL had an aide with her mom for several years and it worked fine. I think her thought was that I didn't have funds to do this. That is somewhat true but really the reason is trust in what would happen in my absence.
Part of me wishes he were home, but it would--at this point--require helpers through the night. Otherwise sleep, for me, would not occur. Additionally, if I wished to be able to go out at all, there would have to be 24 hours in-home aides.
It says something about me, but I am less comfortable having someone in my house 27/7 than I am making myself comfortable at the ALF and spending time with Jeff there. My "line in the sand" (or at least the one that happened,) was, like Marilyn's, when he know longer recognized our home, or had any real clue where he was.
I think that's my line also, emily. And it appears to be getting closer. He no longer recognizes our home late in the afternoon into the evening. I got the grand tour after dinner tonight, into all the rooms, opened all closets and doors; outside ; garage, the whole nine yards. He said he knew he used to live here but couldn't quite remember where the rooms were. After he sleeps, he can get up and go to the bathroom by himself and back to the bedroom and bed; and in the mornings, he knows where everything is. I realize part of this is sundowning. He tells me this used to be his grandparents' home and it seems weird to be living here again! I just go with the flow and hope for the best! I have him in daycare 2-3 part days per week, but he's really not far enough to be there - their activities are less than good, especially for the 2-3 men they have. But he thinks he's going to work, so it's working out okay for now.
I don't know if I will recognize my line in the sand when I see it. My dh really doesn't know who I am but it has to be a familiar arrangement because we share the same bed. I can't let him go to daycare yet....I think I challenge him mentally more at home. I just can't believe being with other dementia victims would help. I have to admit it would give me a break.
He always emptied dishwasher. Now he doesn't know what room it is in and where does he put the stuff? Oh my.
DH is getting worse mentally but he is still continent and I love him dearly. His birthday is Tuesday, 86 yrs. old. I have stopped fighting him about his meds. Manage to get his heart med and Plavix into him but that is all. Aspirin, Vitamin D and Stomach coater have all bitten the dust.
Physically, I am slowing up as I am 80. Can't go forever. I know I have limits and that will be my line in the sand.
I thought my line in the sand was violence but it wasn't. I was relying on neuro's opinion and afraid of trying to get husband placed while he was cognizant. As he declined and as the falls increased he would kick me and hit me when I tried to move him. I don't think he was intentionally abusive but was frustrated and maybe scared.
Okay, to be honest I was scared since the beginning of this year and probably before that. Scared of so many things; that he would overpower me mostly.
I was worried that I could not legally place him and spent a significant amount on a guardianship specialist lawyer. Although it never happened, I was scared that he would turn on the companion animals.
Looking back on it I find it difficult to believe I lived for a year and a half like that.
shirley--I'm not being sarcastic, but unless you are Superwoman, I don't see how you can "challenge" your husband more than a good adult day program would. One of the most significant benefits (right up there next to respite for the caregiver) is that they conduct activities nonstop that are geared to people w/dementia. A good program breaks the participants into at least two different groups and has activities going on concurrently. For example, the earlier stage participants may be involved in a current events discussion, while the later stage folks are involved in a seated, ball-toss activity.
flo39--gotta say, your response about putting his hands on you made me nervous. I never experienced that, but after one time, it would have been my line in the sand. We have all heard news stories about people w/dementia actually killing others while in a rage. At a minimum, your dear husband should be given an appropriate medication to eliminate those bad times. My husband was completely uncooperative with personal care until he was hospitalized and his meds were redone. Please consider addressing this issue with meds, and yes, it is foolish to try to reason with a dementia patient if the result is rages.
Abby--missed you too! Re your last sentence--I have looked back over the 7 yrs I took care of Steve at home and now have the same emotion you expressed--how did I do that????? I guess it was the old "one day at a time" thing!
I know you aren't being sarcastic. I have no experience with daycare. Maybe I am just afraid deep down that it is another one of those "final steps". Once I acknowledge to myself that dh will benefit from daycare, that will make my job just one step closer to losing control. I have peeked into the daycare from time to time and have seen them playing all sorts of games and I also see some just sitting and staring. Perhaps I am afraid dh will not want to participate in anything. He can't do anything on a "current events" level and physically he is better than "ball toss". I wonder how our program here rates....
Day Care wasn't available nearby for hb, but twice a week I took him to support groups about 45 miles south. He didn't always do activities most were doing, but he always got attention and seemed to enjoy being with people. At home, it was the dog and I--not so stimulating.
Well, Shirley, perhaps you should check the program out (with an open mind). Funny thing is, many people with dementia actually enjoy participating. I understand about the sadness of admitting to yourself that your LO is appropriate for something like daycare--yes, it is a milestone towards the inevitable. But if you can get beyond that, the benefits (for me) far outweighed the negatives. (And I don't know how long you've been a member here--but my husband was actually kicked out of a day program about 4 years ago--but I found a better one and he kept on attending.) I know it was one of the support systems that allowed me to keep him living at home for so long.
Day Care was a life saver to me. I was working part time and was able to leave DH home alone - at first. He would sit outside. hoping somebody would stop and chat with him ( a very few did) Then when he got a little worse, I knew he couldn't stay alone. I was very fortunate that the day care was close by and I only paid what I could afford. The first day when I picked him up, he said that he thought he'd never see me again. I could have cried. (I have tears now just remembering that) Anyway, the volunteers all made over him all the time . He loved to dance so when they had music, he was REALLY popular.
You said we've all heard stories of dementia patients killing in a rage. Well I haven't! This does explain that time Dianne was trying to get my attention by repeatedly batting at my arm while making those strange sounds. She was obviously in a rage trying to kill me.
I have more sympathy than I can express for the realities of weight and strength. I've talked about that being a definer in our experience many times and it is a great deal more stress than my situation where I am well over six feet tall and weigh 200 pounds whereas my wife is 5'5" and topped out around 127.
As I said and we know, boys were raised very differently. Every guy I know went through the same thing. "That's just a scratch. That doesn't hurt. What are you a suck? You're not going to cry are you?" Men are conditioned to be combative. Obstacles are to be overcome. Pain is to be ignored. Emotions aren't wanted.
That's not the whole story although I would love to see what women are like if it's them that have the testosterone pumping through them and it's men that have estrogen. Better living through chemistry.
None of this excuses violent behaviour and with dementia responsibility increasingly can't be assigned. The bottom line is that I wish none of you had to face this. It's a nightmare understanding what it would be like if I had to face everything this awful disease does - and fear for my safety from my spouse.
I'll tell you a boxing secret. When you're going to deck him aim behind the head. That way when your fist meets their nose it's still accelerating. Oh, sorry. That's what we teach the boys - not the girls. On the other hand I never could take my sister. She wasn't just tough. She was strong. She used to beat up the older boys that picked on me like John Monroe when she broke his nose in the schoolyard facing down three of them. The pants are on the other horse in that family.
I've been hit on the head with a pan, I've almost had my ear bitten off, and my wife was convicted of assault against me (though she made it through parole and her record is now clean). In L's case the violence was triggered by confusion and anxiety and panic. Which is why medication and a controlled environment are important. The violence was almost because her emotions were set off and she didn't know how to handle them.
It's been quiet on that front for 2 years. However, in the last blowup between the 2 adolescents (neither would eat dinner with the other that night) in my home she later said she felt like hitting our son. Keeping my eye on it. And I have warned our son before about the danger of violence and that it will cause massive problems, much more than last time.
Any dementia caregiver who is unaware of where agitation can lead should read paul's comment above. I rest my case.
Wolf--I think your sister was--to employ an overused descriptor--"awesome". I think you're right--dementia is too much to deal with EVEN when there's no aggression involved. Aggression just pushes it over the limit.
I learned (and am still learning) my lesson. Never argue. Give in. Change the subject.
And learn that your LO can absorb emotions, so following the above might not be enough.
The ear biting episode didn't involve any action on my part. L was in a good mood and we were about to sign our new wills. L talked with her FIL and he believes strongly that we shouldn't have a will with a lawyer at this point and just have a home made will. If either of us dies the other inherits everything and if we both die our son inherits. I feel that we need a will since we are in a nonsymetrical situation and L cannot have direct access to the money if I die. Anyway, my FIL got angry about the situation (he is normally very supportive, but he believes in avoiding lawyers whenever possible) and his anger was transferred to L, who then attacked me. Her teeth were on my ear very quickly and drew blood, I kept extremely calm and talked her down and said we weren't going to see the lawyer. At this point she was on probation so if she tore of my ear and I had to go to the hospital it would be back to the legal system with dire results, I was much more worried about that then my ear, which I was also worried about.
A few months later she decided to have the wills signed and to not tell her father. This was important because in addition to the wills we were signing, with my lawyer as a witness, the 5 Wishes medical/legal paperwork.
also i want to add these guys, especially our AD spouses, seem to have superhuman strength at times. my DH is bedridden most of the time is rail thin and has the strongest grip ever seen by a hospice team. if he grabs my arm it takes 2 people to pry him off. so i can only imagine the strength they could muster if they had you in a grip with ill intent, aka raging. if they have their hands on your neck thats a disaster waiting to happen in my humble opinion. please take care to try to avoid these violent episodes if possible with proper medications. divvi
I always blame myself when he does put his hands on me that I have gone too far. I must just let things go or go around another direction to accomplish what he needs. I'm reading carefully everyone's experiences and thinking that could never be me. Of course I never even thought of az in the first place as happening to us.
flo--what I always tried to remember was--out of the two of us, I have the healthy brain--or in other words, I'm smarter than my husband is. Consequently, I felt it was my responsibility, during the rough times, to keep things on an even keel while getting him to do what I wanted. I'm not saying it was easy (far from it), but with therapeutic fibbing, flattery, whatever it took--I was usually able to control whatever situation occurred and keep things calm. Of course, my husband was easy to read and I could always spot the "triggers" for agitated behaviors and avoid those triggers.
Though my guy seems kind and easy, I have seen lately, that he gets a wild look in his eyes when he gets too confused, and I take heed at all I read here. Even my Social Worker told me, if there is any sign of violence call her immediately. She was telling me about a case she handled, where the AZ husband, (in his 80's), and his wife were home, she was his caregiver. She was determined as he had always been so kind of one of the most gentlest people.
Then one day he just pulled a knife on her, and they had to place him.
A technique we are taught at work: Non violence physical crisis intervention
Violence is the third stage in the esculation cycle.
- Choking.....if a client chokes you coming from the front or back. You put both of your arm straight up over your head and turn away....far, far away from them. It breaks their grip and they can't hold on to you and you can get away.
- Biting...push into the bite and quickly pull away.
-Hair pulling..... put both your hands over his hand and press down and push away.
-Grabbing..... you twist your arm where his thumb and finger meet, that's the weakest area, with your other hand grab the one being held and pull out, or as soon as he grabs your arm quickly twist it in a circle before he gets a tight grip and step back away.
-Hitting and kicking..... try to block the blow with your arm or leg. When you block..ie he swings with his right arm I block with my left and with doing that his body will turn abit away from you with your other arm you push him on the shoulder, back, what ever part of his body is closest to you, and push him away from you. If you do it hard enough they may loose balance and that will give you time to get away.
-Running...When a situation is esculation I always mentally fiqure out my nearest escape route and hope I can out run them.
-Stance...when a client becomes agitated you stand to the side from them in an L position, less threatening....Never face to face that is a challenging stance. Also this way there is less of you for them to swing at.
Remember: Don't worry about hurting them because they are trying to hurt you. Protect yourself.
We have to practice this and I've been in many situations and it works. Hopes this helps.
I don't know exactly what my line in the sand is. I know he is getting worse. Tonight he poured Pepsi on his pork chops. The good news is that he ate them. I think it will probably be his incontinence or if I cannot get my sleep. So far neither of those things have happened. Of course, My father who passed from dementia in March was continent up until 2 weeks before he passed. So it may be that that will never happen. My husband is not mean or have tantrums. He is very compliant which I guess is a good thing. He is resistent to daycare but I am trying it anyway. He says he does not like me making decisions for him. I made one though last week and finally took his debit card away from him. He still could remember the password and would walk to the bank and I was finding money hidden around the house.
For quite some time, maybe too much time, denial served both H and me well. It really was not until he stopped work that things escalated into mega crisis. The dx of mci, maybe, ftd, maybe, was finalized to ftd in 2009. While going through paperwork here I have recently found that a differential dx was ppa which I don't know much about.
Amber! The scope of your advice is amazing. While H threatened many things he was only physical when I tried to move him when he had fallen. He would kick and hit and scream and once said, well screamed, "don't hurt me" and I found it so hard to accept that he thought I was trying to hurt him.
On that last day he was here, the paramedics noticed my hematomas and asked me to sign something saying that I was not abused. Of course I did as I did not want to involve anyone else in the nightmare. Thankfully, he showed no trauma or injuries and I don't even want to imagine what might have happened otherwise.
Marilyn the geripsych told me that the stages for violence were agitation, aggression and then violence. He stressed that's why they need to have their agitation treated before it turns into a more difficult behavior to control.
Still working on the "line in the sand" but I had a good dose of it last week when I decided I can't stand having 2 adolescents in the house. Both my wife and my son refused to eat dinner if the other one was at the table after a yelling session earlier that day. Made me realize more how bad L's presence is for our son and how difficult for me it to deal with both of them. Her psychiatrist is recommending that I start work on LTC placement because it will take months and her doctor feels that L has lost a lot of ground this year and thus might be much worse off in the next few months.
I am on the lookout for specific things that would be put in high gear to place her: - return of violence - her safety. At some point I may not be able to keep her safe (even with hired help). - loss of an ADL - physical issues
It is hard to say because she is still so high functional but except for early morning she cannot be left alone. Thankfully she can still volunteer with cats on Saturday afternoon but I think that works because she is with other people and I am not sure how much she helps out. I do note that she often gets bored when volunteering. Her being unable to do the volunteering could be another trigger for placement.
My line keeps moving. However, in our case, I am convinced it's going to be the physical before the mental. He is fast becoming totally disabled. I will not be able to hold, push, pull, lift, or any of that when he needs it, which is coming fast. Then I will have no choice but to place him.
Yes the line keeps moving , good way to put it Joan.
I have been thinking so much about eventual placement. One thought that keeps coming up, I know, that I would want to visit him as often as possible. As I live 2 hours from the nearest large town, this is such a challenge. There is a small rural hospital here that has 7 long term beds, it is only 15 minutes away. Of course as it is so small, very hard to get a place.
And, I need to check all this out of course. Even if it was better for ME to have him close, the main thing is the CARE. One place that I heard good things about is the 2 hour drive, the place has a really good Alzheimers unit I have been told.
What a conundrum. Do I want him somewhere so I can keep working, and have more time? Or, will it be worse because I have to drive so far and will feel bad if I do not visit enough, bad for him and me.
Many may not agree with me, but I don't think you need to visit a person with AD as much as a person who doesn't have AD. They really don't remember if you have been there or not. Of course, they will always be glad to see you but will forget you have been there before you can get to your car.
My dh this morning doesn't even remember the fall and the EMT's being here. The nurse is going to be coming in a couple of hous to check him out and test his urine for a UTI. I have him peeing in the urinal all the time so I can keep tract of the amount and color of his pee. That is how I know he has been peeing a whole lot the past two days compared to earlier in the week.
My line in the sand just moved up to one of my top priorities since last night.
Everybody's different. My DH was in a NH only about 10 minutes away. I went at least three times a week and would stay about an hour. I know he didn't know me towards the end but I would push his wheelchair outside and sit with him, holding his hand. I guess it was mainly for me. He would talk a lot, but nothing mad sense.
Judith--when I placed Steve last summer, I started visiting every other day. Then when he began to have gum disease, in January, I started going every day to clean his teeth. He is late Stage 6 now and recognizes me; I was gone for 2 weeks (vacation) and the aides at the ALF thought he missed me (he seemed more agitated during the period I was gone). His daughter visits about once every 2 months; the aides don't think he recognizes her when she comes because he seems agitated and takes a while to calm down when she's there. So in our case, anyway, it seems that frequent visits help him to "remember" me. But, it's really all guesswork, as we all know! Of course, I live in a major metro area where there is an abundance of facilities, and the one I chose is only 15 mins. from home. I feel for those of you like Coco, who live in remote locations where it is difficult to find a convenient, good dementia facility.
DH is only 10 mins away from me. I visit every other day, he's always happy to see me, but wants to come home with me. The getting away is the hardest...doesn't matter what excuse i make to leave, he says "I'll come with you".. Being close and able to visit easily is good, but good care is the most important...
The line in the sand shifts day by day....I don't know what my plan is...just trying to get through one day at a time..
One reason for visiting is that this helps ensure quality of care, if nothing else. Unannounced visits that don't follow a patern are recommended.
I am now looking at placement (alf). Many facilities but problems due to age (young) and dx (ftd). Plus close by means more expensive and no LTC insurance. There is talk of a eod wing opening up but that is an hour away. Best places for L would be a neurologocal behavioral facility but the closest is a city away (4 hours) so forget that.
I really dont know how often I will visit when the time comes, given that I work and have a teenager at home.
I borrowed Carolyn's idea, and it works for me too. He always replies "ok" or "you're entitled". Last week, though, he surprised me and said "me too". He was right!
I know this has to be addressed and I will search for it for myself to read.
I am getting quite a bit of pressure from some family members, friends, and others to place him, now. A lot of this is on the phone long distance too. When I try to tell them , it is not time yet, I am lining up things the best I can, but it is not time. He still knows me, loves his cats, eats well, and have some semblance of happiness. Of course I get the burnout, but as long as I sleep at night it is tolerable.
Then I get the feeling, from some, well don't complain to us if you are not going to do this. Just can't win.
Today the VA nurse and the Geriatric Physcologist(sp?), AND the social worker are all coming for their monthly visit. (All really neat ladies, the G P comes from Honolulu once a month and then they do the long drive out here in their big Government Vehicle)
I want to try to consult with them in private a bit about this. They seem to think I am doing a great job here and I have heard no suggestion of placement. Although the GP said that one of the main reasons for placement is lack of sleep. Glad to have them coming.
Coco--you know that placement isn't just about the person w/dementia's needs but is about the caregiver's health and sanity as well. Please be honest with the professionals that are visiting you about how you are coping. I was always from the stiff upper lip school re this, but looking back, I think perhaps I should have opened up more.
Hey marilyn thanks! I always remember you mentioning awhile back that perhaps I should consider moving somewhere closer to town. At the time I was like, well no way what would we do with our home mortgage etc.?
As time has progressed, other alternatives have come up. Perhaps a little studio for myself if he is placed, and renting my house. Things just look so different now.
I had a meltdown on the phone with the Geriatric doctor that is coming today, about 3 weeks ago. She was great and listened while I cried, that was the time she upped his Seroquel dose. They are aware of me that is for sure! lol I let them know each and every downturn.
I guess..it is at the time to start looking at places. I have to go to town tomorrow, the Home Aide is coming for 10 hours. I am going to talk to the gals about looking at a place there.