Some of you that have placed your spouses have commented that you waited too long. What does that mean? I have been a full time caregiver for my dh for 13 years. He had a massive heart attack 27 years ago and started have symptoms 18 years ago, but we didn't get the vascular dementia diagnosis for about 5 years. He is mostly stage 6. He knows me during the day, but seldom at night. He spends most eveninsg asking me nonstop where his wife is. He knows the dog though, go figure. I can't trust him out of my sight. He is still continent, but does a poor cleanup job and refuses to let me help him. I am physically tired, emotionally exhausted and feel he deserves better that I can give anymore. I am considering placing him in an AFH. I alway expected he would have a traumatic event like another heart attack or a stroke. It never occurred to me that I would have to make this decision. It is hard enough without thinking I may have screwed this up. What is too long?
DelS, since I have not yet placed my DH (but am leaning towards doing so within the next year) I'm not really one to give you much concrete advice except that you should do whatever you believe you need to do. Don't look back and don't feel guilty. I've only been doing this for a few years but I promise you I will not last 13. And relax, you've not "screwed this up".
DelS, I don't know what too long is...but it sounds like maybe it is time for you to have a look at placing him. Good Lord, if you've been a fulltime caregiver for 13 years that is a long time. It sounds like you have been a devoted spouse and caregiver, I wouldn't worry about screwing things up.
"I am physically tired, emotionally exhausted and feel he deserves better that I can give anymore."
DelS, it sounds like you might be at that point already. There's no requirement in the Alzheimer Rule Book (ha!) that says you must provide all his care yourself. You are only one person. Placement doesn't mean you don't provide care any longer, it means you continue to be his advocate and oversee the care others give round the clock in a facility dedicated to just that. You can only do what you can do. If you can keep doing it, and are able to meet all his needs, that's wonderful. If not, perhaps you should be looking at placement. Placement is NOT an indicator of lack of devotion or caring. Sometimes it is the most unselfish thing you can do. (((hugs)))
DelS placing my husband has allowed me to step back and make better decisions about his care I am no longer exhausted and frightened. The care home listens to my requests and husband is doing much better with changing 24 hour care givers than one weary wife.
I agree with bluedaze placing my dh was the best thing I did for him and me, I see things clearly now, he gets the best of care I couldn`t give, I was exhasted to the point of getting sick, up all day and night, my goodness 13 yrs. is a long time maybe it is time for you to place and take care of yourself so you don`t get sick, it is not s selfess thing to so you may be doing the best thing for him. God bless you honey and I`m sure you will make the right decision for the two of you. Gail
I am physically tired, emotionally exhausted and feel he deserves better that I can give anymore." That says it all. That was my exact feelings and while I have not totally come to terms with the fact that I had to place him, I know that in time I will and that I did not really have a choice.
((Del)) I agree with everything our wise family has shared with you. To answer your question: When I say I waited too long... I meant that he needed more skilled nursing care than I could provide long before I placed him. I also waited until I was at total burn out.
There is no penalty for waiting too long *wink. Please take care of you! It truly does sound like the time has come. We are here to support you in any choice you make. ((hugs))
Thank you for the feedback. It sounds like the waiting too long is more about for the caregiver than the spouse. I was worried about his being able to transition, but I guess it doesn't matter if I can't continue with him at home. Apparently I have another new hard road ahead. At least I will be able to sleep all night.
DelS, if you are asking the question on whether it is time or not, it probably is time to place. It took a while, but I am very glad I did place my husband. I was exhausted and no longer able to think clearly by the time I placed him. With him placed, I started to get a better night's rest and was better able to help with his care as needed. From his perspective, they have more activities that I could come up with and lots more space for him to maneuver his wheel chair around. When I see him, I can always smile, tell him I love him and give him lots of hugs and kisses which he still wants and enjoys.
I'm also thinking it is nearly time to place DH. (Past time according to the family). I hope to at least make it through this year. What is the procedure? Do they do testing to determine what kind of facility or level of care he needs? Does one need a doctor's statement or prescription? Besides being hard to think about doing, it is also a bit intimidating for me. I just don't know what is required to actually place him. My own pcp told me I should take the advice of our children when they suggested it is time. I feel like an ostrich and just want to put my head in the sand about the whole placement thing.
gmaewok easiest way to go is to look at several facilities and ask their admit person to tell you what they will need. They always need patients and will be very happy to assist you.
Last week I checked out a NH for the future. The head lady told me the best thing is for the doctor to admit them in the hospital for a couple of days and then transfer them to the NH. I think Medicare pays for a certain period that way.
Carolyn-if a person has a 3 day qualifying stay in a hospital and will need skilled care in a nursing facility Medicare will pay for the first twenty days. Skilled Care is the clincher.
Lynn didn't need to be admitted to the hospital first. He needed help with every aspect of living. Here they have a nurse come out to evaluate. They like to do this before placement. Due to a bed opening so quickly, they evaluated Lynn after he was placed. It was very simple.
nikki......you're so young, too, and Lynn (like my John) is so much older than you.......can you tell me how you can afford the nursing home kind of care??? This remains an issue I'm scared to death of and don't thoroughly understand....if it's too personal, just say so, or if you don't want to post your "LIFE" here, just e-mail me. It's a very scarey thing for me to consider....all I see are financial hazards, family destruction (based on what I've just been through). Do you (are you lucky enough) to have an education and a career??? Does Lynn have a long term care plan in place??? Thanks. Methinks I'm VERY close to having to make a decision.....or it MAY be made for me by health care workers.....they are seeing that he isn't willing to work with them OR me here at home and don't believe I can actually keep MY EYES OPEN FOR 24 HOURS A DAY. (he's been coming down the stairs at night alone, not that THAT is a reason to take him away from here, but THEY think so) Jen in VA
Carolyn, skilled care is the highest level of care in a nursing facility. You have to meet certain criteria to be accepted. It is like the ICU of a hospital, not in the real sense, but just as a comparison.
I thought Medicare would pay for the first 100 days of skilled care in a nursing home as long as the patient was improving. The trouble is that they can decide very easily that someone is not improving at any time and quit paying.
Carolyn skilled care is usually one of the therapies such as physical or occupational, speech for swollowing problems, extreme deconditioning after something like a stroke, need for heavy duty wound care-there must be an end point with a goal. Anything chronic raises a red flag. A lot of people think MC will pay for 100 days of care-not so. One good thing is that if the person can qualify for admission the social worker can quickly make the application for medicaide and it will be retroactive to the date proceedings were started. Hope this helps. If not just ask more questions. I'm here,
There has to be a reason to admit them to the hospital which we don't have and my husband doesn't need skilled nursing care, that is why I am looking AFH. They cost half as much and give much more personal care because there are only up to 6 people there. I understand he will have to have some sort of assessment that is done by a nurse. I don't know what that consists of other than I get to pay for it. He is going to think I am sending him away and won't understand why. The thought of placing him just makes me cry, but thinking about doing this any longer makes me cry anyway.
Stuntgirl, I don't mind sharing, maybe it can help someone else out. I have a brain neurological disease that causes extensive pain. I have had 3 brain surgeries and countless procedures. I have been disabled for 10 years now. Due to the house being in my name only (Lynn insisted on this when we married) and our income, Lynn is eligible for medicaid.
When I was looking at all the different places none of them asked for anything special. No one suggested a hospital stay etc etc. I said he has Alzheimer's, they said how sorry they were and showed me their AD facility. His doctor did write a letter stating he had AD and needed help with all personal care. That was it. Very simple and smooth.
FYI. I would caution those of you who may have a spouse who will refuse to stay.. a nursing home etc can not by law keep someone there against their will. Due to Lynn's nature I was told ahead of time that I would need to get guardianship of him in order to place him. This too went very smooth for us.
Thank you, Nikki. Your explanation is very helpful. Some of my resources have made it sound like such an awful, complicated procedure. John's at the point where he'd stay in the bed layed out like a "viewing" all day, every day if I didn't insist on his getting up. Fights me if I insist. No care for his personal hygiene unless helped or "stood over" while he 'attempts' to wash his hands or brush his teeth. Won't go get himself any food or water. Depends on me for everything......I bring his meals to his bed most times because I just don't want to fight. Goes to the toilet by himself, that is why I think he could do more for himself if he wanted. Visiting nurse is recommending (once again) that we try an anti-depressant. She's coming by some time today and I am going to let her see him in his "normal environment", his dark room upstairs. Let her try to get him up and she'll see what I have to contend with all the time. He clings to the covers and yells, "LEAVE ME ALONE"! if you try to uncover him and help him sit up.
We sure do learn a lot here, don't we? I don't know why that person at the NH told me that. DH is very healthy except for AD. I always say that he'll probably outlive me. He would definitely be going on Medicaid very soon after being placed. I already have been in touch with an elder law attny. Right now he is not ready. (Sometimes I am, but that's another story)The mornings and bedtimes are horrid. The middle of the day things are pretty darned good.Of course, we can't discuss major issues but we can chit-chat about different things.
My FIL was diagnosed in the late 80s with AD(now 88). He is still very healthy except for his mind. He is incontinent but spends the days walking the hallways with a smile on his face. Go figure, after 25 years or so, he is still alive. AD only affects their brain, not the rest of their body. It will keep going until the part of the brain that controls functions goes.
I haven't posted in a while but the issue of when is it time or how to survive until it is time, is facing us right now. The new medication seemed to be 'working' but DH has seething anger and over the weekend directed this at our son. He has erupted in this horrible way toward our younger son in the past and now he is calling our older son threatening to sue him and spewing pure venom of hate toward him. This, when both sons and both daughters are working as hard as I am to try to provide for him.
I left the house during the most recent yelling cursing at our son.. Gathered up things in a huge hurry told him I was leaving and would be staying at the studio. I don't want to go back and today will meet with a home care service but it is doubtful that he would accept having anyone show up with a cleaning kit, posing as a housekeeping service.. My children don't want me to go back and I waffle between thinking..ok I'm overreacting..but the truth is that he would NEVER behave in these ways to a non family member. The dr. said that he would likely progress from verbal to physical violent behavior.. When is it time? As much as it seems 'in good moments' that its not time.. the bad moments and the sudden turn from nice to nasty without warning, makes me think its time.
Judy-it's time. I put up with extreme rages for too long-but I didn't have family being yelled at on a regular basis. Husband did erupt at my daughter out of nowhere. I don't know where that venom came from. I got my husband admitted to a psych facility for med management-actually the pollice took him when he went totally out of control. Picture this-two police cars, all the neighbors standing in the street watching and my husband taken away in handcuffs. It took 4 police officers to manage him. Please don't wait for things to get this bad. By the way-my neighbors weren't there to gawk-they were there to help me.
judy i agree with bluedaze, the verbal eruptions are only a heartbeat away from physical escalations. if you are fearful enough to have to leave your home then its time to make some decisions soon. your family needs to be supportive during this time and his outrage is doing more harm that may not be able to rectify itself later, divvi
If you need to leave the house to feel safe, it is time to dial 911, explain the situation and tell them you need someone to take him to the hospital. That was the advice the Alzheimer's Association gave me and I'm giving it to you.
I found out what waiting too long was all about. His beloved Golden Ret. was making a mess in the yard and my husband took after him with a golf club because he didn't want that "big red dog" in his yard. He loves that dog, but didn't recognize him. A few nights later he wanted a stick to kill that cat that was on the wall. It was light reflecting on a gold colored closet door hinge. We don't have a cat. He doesn't always recogize me; it could have me that he wanted to hit with a club. In one of the threads I read that if you found yourself on the bathroom floor at 3:00 AM crying, it was time for placement. I was there. My husband is now a resident of a Memory Care facility . I am home with "the big red dog", the imaginary cat, a broken heart and headed for poverty. Walking away and leaving him was the hardest thing I have ever had to do. The thought of him walking the halls searching for me hour after hour is almost more than I can bear. I wish he would have died so I could just grieve and get it over with.
As difficult as it was for you to place your husband, please realize that you did the right thing. Hopefully, Nikki will be along soon to give you support and understanding, as she was desperately sick and depressed when she first placed her husband, but they have both adjusted. I'm not saying it is easy, but he will get the care he needs, and you won't have to live in fear of what might happen to you and your furry baby.
As those who have been through it often say - after placement, you can take better care of yourself, so you can be his advocate. It's a 24/7 job. Professionals rotate shifts and are trained to care for your husband.
DelS, oh friend, lots of hugs coming your way! how awful for it to end like this but he is safe and so are you now. and your pets depend on you for safety too. they are out of their minds and have no clue they are tearing the family apart but i guess in a way its best this way. i hope you find support from those here who are in your shoes today. many have just placed theirs as well. i am so sorry but glad you did the right thing before you got hurt. divvi
DelS - I placed my husband the end of June of this year. Even though he did not present a danger to me, he was a danger to himself, getting up all hours of the night and falling down while I was asleep and didn't hear him. I agree that walking away from them the first time is the most difficult thing in the world to do. Give it some time. I think I am having a harder time adjusting than he is but we are both getting there. He is in a great facility where he is clean, well fed and safe. I am able to work through the day and sleep at night, making me a better care giver when I am with him in the evenings. Don't torture yourself about what he may or may not do while you are not there. If you are comfortable with the level of his care, leave it in the hands of the professionals and make the most of the time you do have with him. I know the pain you are in and my words probably mean little to you now, but it will get better. I promise.
DelS - if he is wandering the halls of the facility at night, it could be worse. He could be doing it at home and getting into all kinds of stuff either while you sleep or keeping you awake so you are getting no sleep. Neither of those choices is a good solution. It is no longer safe to keep him at home. That safety is for him and those in your home (2 and 4 footed/real or imaginary). Anything that he is doing in the facility, he could be doing at home or worse - a least they have someone there 24 x 7 and they get to go home.
When I put my husband in the facility, I just kept telling him that it was no longer safe for him at home and I could not take care of him anymore. As my husband had a real hang-up about safety at that time, he accepted the reason.
The pain you are in, is normal and you can get through it. As you get better rested, you may find that you enjoy being with your husband again and are able to share special moments together.
I also found that my husband adjusted better to the changes than I did.
My DH is just beginning the moderate of AZ. He is ok most of the time. I can leave him and he is still independent. I went looking at memory care assisted living units in my area a few months ago. The one that I like best has a 2-3 year waiting period. It is only about 10 minutesn away from our home. I went over there a few weeks ago and put down a deposit to be placed on waiting list. He may be not be ready to go in when his name comes up but they give you three chances. If you refuse after the third chance, he goes to the bottom of the list. Your money is also refunded anytime you decide not to go in. Please check around your area now before you even need to placed your LO. I felt so much better being prepared and to know what options are available to me.
beachgirl I found the same thing. It is a load off your heart when you have a game plan in play. I thought placement was far in the future and I was wrong. The place that I considered ideal for the future couldn't handle my husband when I finally made the commitment.
This seems like a good place to post. I know it's been a long time, but I have been trying to get my act together regarding placing DH. I am also worn out emotionally and near to that physically. This week I put a deposit on a super nice facility within a half hour of home. These folks are willing to work with me on timing of placement and are willing to have DH come and participate in activities, physical therapy, etc. with his home helper's companion so that he can get used to being there and meeting the staff. They are willing to hold space for two months so that I can have the time I need to let go and so that he is in a good frame of mind when he has to stay. I do hope this works. Has anyone done this type of placement?
Thank you all for your comments. I think you are right when you say it is harder for us than it is for them. They tell me he is adjusting well, but searching and asking for me nonstop. I want desperately to see him, but they don't want me to yet and I probably would become completely unwound anyway. I am very fortunate to have a supportive family, but they can't be here with me. So for now the "big red dog" and I lie on the floor and cry together. He is as sad as I am.
I see that I am coming late to this discussion, but I want to add my experience for those of you yet to be there & support those of you like DelS. No heart was ever more shattered than mine was when I left him at a care facility--and, yet, it had to be. One or the other of us would be in an institution, there was just nothing left in me to give. I realized that our AD LO will continue on whether at home or in a facility, placement is really to save the caregiver. DelS lasted 13 yrs! I lasted 10, and it did have a negative affect on my well-being and really no difference on how my DH progressed. My children had been nagging me, 'please Mom, we don't want to lose you to the same disease.' A doctor had said to always look for a way out of a room if I am alone w/him, never knew what this more loving, kind, gentle of men might do to me. It's not healthy to live that way. It was the right thing to do, but I waited too long, it's that hard. My heart and my hand go out to all of you who face this.
Was looking for this thread, to help me learn more about placing...I am in the process of checking out some facilities...and speaking with an Elder Lawyer....I know my DH is in a decline...I read where it is better to place them while they can still understand a bit, they will adjust better...I know it will be better for him to be placed, he will have more stimulation, have more people around him, and will be taken care of....This is one of the hardest thing that I have had to do....after being together for almost 59 years, its hard to let go....I know it will be for the best, for him and for me....if not, this disease can easily take TWO, Any advise is welcomed...
WOW! The thought of that is almost overwelming but each day I know is getting closer as Dee is now starting to hallucinate after going to bed.. (see,s people in her bedroom)I sometimes need to put her back into bed 3-4 times before she falls asleep and last night was up at 3:45,, after I got her back to bed I was not able to fall back asleep so I can see how one starts to loose sleep time.. She was until recently sleeping about 12 hrs per night but that has seemed to change .. I am going to call the Doc and see if there is some med that will help for a while anyway, but if this continues I may have no choice but to place her... I;m so glad (because of this site)I am able to see through others experiances the best way to approch each faze......... Placing my loved one I have spent 42 years with will be tough,,, A thought I don,t even want to think about
dandee, I am sorry that she is experiencing this and it makes night time harder for you! I kind of hate to ask this because I know that the stages are just a guide line to go by and really don't tell the tale in concrete but I am curious because my DH is seeing things that aren't there also(hallucinating) he sees birds flying by him but so far they are not keeping him awake, he does have weird dreams that some times keep him awake. I just thought I would ask considering the subject came up. I hope you don't mind. I really hate this disease and would hate to place my DH but he has even told me that if it gets to the point that I need too, he wants me too(sad huh!)
about the hallucinations while in Arizona my dh started by seeing five kids sitting on the couch and in the bedroom always saw a big black man, now 2 yrs. later in the nh he says there are two men who want to kill him, it`s not all the time he does have some good days and he is now calling all the nurses Mary. they are still trying to adjust his meds for being afraid but no matter what they give him the hallsucinations are still with him. o ya and we had a big block fence around the house and he used to say he was watching the water, hello no water in Az. so I would sit and watch it with him. not sure but in Mi. we have water everywhere, maybe was remember the water here? he is pretty much adjusted to the nh now but we took him out to do the memory walk now wants out again, so working on getting him readjusted. Gail
Meds can probably help with the sleeping, talk to your doctor and expect to experiment until you get the right ones. If that's the only thing giving trouble you may be able to live with it, but if it isn't - and I guess, anyway - start checking out facilities, getting all the legal ducks in a row, etc. We all have our lines to cross and limits to manage.
RB13 and dandee - Very hard stuff you two are going through and my thoughts are with you. I have been asked if I 'think it might be time' from friends too. Very very very hard!! For now, our issues are not as severe as the ones you two are having, but just wanted you to know as I read your posts, my heart goes out to you both. Please keep us informed about how things go for you, for as you said, it helps others to know what/how to do the same, if indeed it comes to that. Take care!! ((((Hugs))))