I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about the emotions involved in placement. Please post comments here.
Joan, placement is not the best emotionally but you now KNOW that it is the best physically for both of you. My heart goes out to the turmoil you and others are facing.
In the best case scenario - your dad and Sid can be in the same facility. That would make it much easier on you to see that both are getting the best care possible.
Joan--you are really in a tight spot, needing to place both your Dad and Sid. Last year at this time I was actively arranging for DDH's plaement--sitting on waiting lists when it's past time is really bad. We ewere dealing with Medicaid as well. Our financial picture was pretty dismal--underwater mortgage. Then, when it looked like ceverything was in place, the ALF (not many take Medicaid) stalled us because DH was still smoking and that was a trigger for elopment. Physically he was still walking, talking, feeding himself, but falling, TIAs, losing words, names, etc. Then we had an episode--an altercation, and he went to the hospital. In 2 weeks ti9me his psych meds wer changed and that was better, but he'd been Dxd with CHF as well. He was transferred to a NH--by luck the one I'd hoped for originally (waiting list not moving). He knew whre he was. Didn't want to be there, but with reminders, understood he needed care we couldn't do at home, and the house was being sold. He did adjust. As several who've gone through it have indicated, it seems to be harder on us than them.
If possible, could your Dad and Sid go to the samefacility? It might be good for you if they could. One place to visit.Potential familiarity with staff. My concern is that you really can't wait to start the process for Sid until your Dad is placed. You need to get on those wiing lists ASAP.
Believe me, we have considered having them in the same place, but Sid's placement is via Medicaid and programs that won't leave me homeless, and that's going to take months. My father's situation is entirely different. He's 94, failing, and needs a nursing home TODAY. And he's private pay. Big difference when it's private pay. They open the door for you. We have chosen one for my Dad.I cannot handle everything at once, so I'm just trying to get my father moved and settled, and then I'll work on the Sid situation.
We thought it would be great for both of them if they were roommates, but Sid needs a dementia ward, and my father does not. And, as I mentioned, my father is private pay, so that's easy. I'm just waiting for the doctor to send in some paperwork. In any case, my father's situation is an emergency, and Sid's is not.
I'm having a very hard time imagining my husband living away from me in a facility. I can't wrap my head and heart around it.
Just know that all of us who have been helped so much by you are with you in spirit as you must make these difficult decisions, Joan. Just hang in there as best you can. As you've told us so many times ... nothing about this horrible disease is easy.
*tears* Every single time I read of someone facing the gut wrenching decision of placing their spouse it takes me right back to the emotional hell I experienced. My knees start to buckle, the lump forms in my throat, the tears spring to my eyes…..It is soul crushing and it shakes you to your very core.
I can almost feel your heart breaking Joan…… I wish you peace and strength for the trying times ahead. Four years later I can say that the time you are facing now, and then both of your “transition” times will be the hardest for you. In time he will adjust Joan, he truly will. Living without them at home is still so hard for me, but… we have to love them enough to want what is best for them.
It isn’t ideal, but it isn’t all bad either. I am able to see Lynn every day and spend as much time with him as I want to. I am well rested and able to make his happiness my focus. Our visits are filled with laughter and love…. In time Joan, when you are able to finally swallow the perpetual lump in your throat, when the sharpness of the pain lessens some, then you will be able to find comfort and peace. ((hugs and love))
Like most, I waited too long for MY well being before I placed my DH. My children kept saying, "Please, Mom, we don't want to lose you to the same disease." They could see, the doctors could see, but I didn't want to see. Finally it was either he was placed or we were both placed if I didn't come apart first. And my health did suffer, things happened that the doctor attributed directly to the CG stress--and I'm strong, had family nearby to help, but I am human, too. You've heard me say all of this before, and I know how tight your shoes are, I've walked in them. But chances are, really chances are good, that he will adjust. It is we, the caregivers, who suffer more, who walk alone, but even that comes about in time. Just know that so many here are supporting you, sending you strength. I will not tell you it will be easy--but you will both adjust, even tho you don't want to. Blessings. Betty
My youngest, who returns to the east coast tomorrow, went with me to see all of the facilities I have seen so far. The first was nice..very expensive and we would have to provide the furniture! The second was close to home, nice nice people and clean and has activities but being on insulin is an issue...so it may not work out, the third place we saw was a private home, it was clean, nice in many respects but it did not seem like a lot was done with the residents....housed 6 and every time I have been there folks were just sitting..nothing going on..and today we went to one that is glorious..and has every thing we would need...just a beautiful facility and would break the bank... Tonite we took our girl out for dinner before she leaves tomorrow and when we got home I had a panic attack..took my meds...( I only take 1 mg Valium..my Rx is for 2mg once or twice a day but I use half that once a day..but tonight I took another half..for a total of 1 mg...) and it helped...the stress of this upsets me beyond belief. And all the people I have seen in all these places are so much worse than my DH.. But I have to get him on lists as someone said earlier, you can't wait until the last minute when there is an emergency. We will have no choice but to be private pay..and from what I see, some of these corporations make costs just beyond reach...sad.
Joan I never thought it would get easier...but for the first time yesterday I saw a sign, DH said something that made me feel so much better about having him placed... As DD and I were leaving him yesterday one staff member told DH to say good bye to the family (us) as we had to go run some errends...and to my amazment he said " ok and you are my family too now"....I walked out and burst into tears, Dd the same, we hugged and went home not saying another word...
I know that feeling, Julia. I sat in the car with my son and not a word passed between us. But, yes, most of the time it does get better. It's just hard until that point arrives.
Joan, I am in the same place as you--seeing my financial advisor tomorrow regarding Medicaid. My husband is still ambulatory and I am managing but for me it is the mental more than physical that is killing me. I realize that he could lanquish like this for years and being that he is 10 years older than me, I am seeing my life or what is left of it going down the tubes with him. I watched my mother wait far too long before she placed my father and it almost killed her literally. I am not letting that happen to me. I am plagued with tapes in my head that say, "but he is not that bad, you can manage or the killer one that says this will ruin you financially. I have a little money, not a lot and I guess I am fortunate that I am not upside down on my house. For that I am grateful. I have told him I am probably going to place him by the summer. I do not want to lie to him as my mother had to in order to get my dad physically to the nursing home. He refuses to go to daycare and the senior center where he goes each day is really not enough stimulation for him as he cannot participate in any of the activities and games that they offer or else chooses not to. When he is at home the only thing he does is sleep or watch television. I am praying for you that all goes well. My father was finally placed and only lived 6 months. Up until the end he still thought there was nothing wrong with him and that he could still drive. He was 96 when he passed. I can totally relate to what you are going through. You take care.
It seems you have just told my story. I finally made the decision of placing my wife of 41+ in a AD unit. for the past couple of months she has been so mean, hateful and abusive more than once the stress has produced chest pains and I have already had by-pass surgery several yr ago and two stents this past Apr. Today she is so calm and I wonder if I have made a mistake. The nurse is coming tomorrow for the evaluation. So many have told me I can't continue to care for her but I hate to let go.. but I also can't take seeing her in so much turmoil. I feel guilty doing this at the holiday season... but last night somewhere between 2:30 and 3:45 while she was screaming and yelling "I hate You get out of my house" I decided to make the placement ASAP. Now she is more calm than I have seen her in probably 6 mo. I dread walking out and leaving her there.... I think I need her as much as she needs me. I've got to sell out what was suppose to be our retirement and whatever else has to go to pay the bill... as she doesn't qualify for any SS benefits. I just want her to not be in so much turmoil and confusion. I guess I've said all of that to say thank you.... it has helped to read and once again be reassured I am doing the right thing.
cd52: Have you tried the antipsych meds on your wife? My husband acted similarly and I thought I could never stand to go through years of that hell. But then, he was put on Seroquel and Namenda and it was like a miracle had happened. I have been able to live comfortably with him up to this point.
Joan: I understand what you must be going through, except I don't have the problem of a father or mother to deal with right now. Just the thought of putting my husband in a facility makes me physically ill. I brush the thoughts away. I cannot imagine doing it. But, I know someday I will have to. I am slowly losing my patience with the constant questions, asking me how to do even the simplest things, things he could do by himself a couple of months ago. I tell myself it's because of the emotional trauma we have both been through over the loss of some close family members on both sides that has caused him to go downhill, and because I am more irritable and emotional right now.
We saw his doctors today and they say he is physically extremely healthy. So this could go on, getting worse and worse, and I will be getting worse and worse emotionally at the thought that I may never have a life of my own. Yet, still, the thought of putting him away while he knows me and needs me...I can't do it. Not until then.
Reading through these comments, I feel like crying. I can't believe what I'm going to be facing - my heart goes out to all of you. Hubs is still pretty functional (if he wants to be!), but the short term memory is gone, the repetition is so frustrating for me. I wish could feel compassion for him, but he's so argumentative & defensive about EVERYTHING I say. We've had a couple of discussions (?) today about his lack of personal hygiene - this morning he was very receptive, tonight I'm crazy & I need to see a doctor. I already can't stand it & we have such a long journey ahead of us. How do you know when it's time for placement? I've been avoiding even the thought of it, but I know it will come. I'm not exhausted physically, but emotionally, I'm exhausted already. He will be Medicare/Medicade, we have no way to be self pay. This is just boggling my mind
Mim, "Hubs is still pretty functional (if he wants to be!)" strikes me. Part of dementia affects whether or not he wants to be. So when he isn't functional he still isn't making that decision. I think the entire motivation thing is one of the hardest parts of dementia, as a caregiver. They lose control over motivation and we get upset because we think s/he won't do something and is just being stubborn. Even if we understand we often still feel that way.
paulc, you're right - I guess I do feel sometimes that he's just being stubborn. He's always been a stubborn man, but now it's super stubborn! He has been a bowler since he was about 13 (he's 77 now) - that & golf in the summer are the only things that motivate & even now the interest in bowling is declining. He goes, but grumbles about having to get ready to go. As I said, I'm beginning to feel the pressure of planning out as much as I can -I 'm overwhelmed & emotional. You seem to have good insight.
Joan my heart goes out to you! Your statement about how instead of sharing your retirement with your soulmate you will be visiting him in a nursing home hit home. It is the hardest thing. In stead of being partners you have all the responsibility, work and sorrow. I was talking to some friends yesterday and told them I was taking my dh up the river to get a Christmas tree and one of them said Oh yes Augie and I are also driving up the river to look at the high water (It is true we rural folk do weird things for fun)...but it was the wording of the two similar trips that I remember now. They were going together and I was 'taking', always in charge and responsible. It gets tiring and lonely. Good luck with your placement work we are here for you.
I could have written this. I am going through the agonizing decision to place DH. Was told by my therapist (who specializes in dementia caregiver therapy) that I am a "completely stressed out, running on empty caregiver". Who knew? Every time I look at DH, I cry. I can't do this! I know many of us are going through this, God Bless us all!
My broken heart and soul is with Joan and all who posted here as I too begin the process of Placing my DH. This is the single hardest thing I have done this far in relation to this monster Of a disease. Just when I am sure that nothing can hurt more....the next 'step' in this journey shows me how wrong I am.
There seems to be so many who are in the process or close to placing their loved one. I'm not quite there yet, but I think of each of you daily, pray for strength, courage and comfort for you all. And lots of hugs.
Just when I think - oh, he's not that bad; he can stay home for another year or longer, something happens to remind me that his condition is getting really scary. As you know, my father is in the hospital and will go straight to a nursing home when he is able, but the end is not far away. My stepbrother in RI is handling all of the arrangements (that's where we are originally from, and that is where my father will be buried), and I spoke to him on Tuesday night. He has not seen Sid in about 4 years. He only has my stories to go by. Anyway, I spoke to him again tonight, and he said - Did Sid tell you I called yesterday afternoon while you were at the hospital? I said - What, are you kidding me? He never said a word. So Marc told me what they talked about. I then asked Sid if he spoke to Marc yesterday. He had NO idea what I was talking about. He asked me what they talked about, and I told him what Marc had said. Sid remembered NONE of it. Nothing. Up until recently, he would not have remembered to give me the message, but if I reminded him that someone called, he would then remember at least that they called, if not the conversation. This time - Zero. Very scary. (He was only alone in the house for about an hour before I came home)
On Saturday, I have to clear out my father's room at the Assisted Living next door, so my cousin (Sid's lifelong childhood friend) is coming to stay with him. I don't feel safe leaving him alone anymore for more than an hour.
Oh Joan, my heart is breaking for you because I KNOW what you are going through with Sid (not with your father). My DH was getting too aggressive for me too keep home, but when he would calm down I would think that maybe I could keep him home longer. I finally realized (with help from everyone around me) that it was time. After I placed him he was calm & again I thought that maybe I could have kept him home longer, but then he started getting aggressive again & I realized that I did the right thing by placing him. I guess I'm a little more fortunate because my DH doesn't realize that I don't live there & that I am not there 24/7. He is unaware of a lot. He still knows me so that is something at least. We have been married 43 years. My heart is breaking.
Years ago, in a group of AD spouses, I heard women say they were going to get their DH back, he wasn't that bad, they would be better CG's, over and over, second guessing. I felt the same way after placing DH, but in truth, my children & the doctors were right, I was aging, getting health problems from the stress, it was the right decision. Didn't make it any easier, but it was best for both of us.
Our neuro told me 2 years ago to look into placement. At that time I told him as long as DH knows his house, that we built it and that we paid it off early ( we don't share it with the bank ; ) ) I was not going to place him. Then during our last visit in early Oct, he said it again because I told him about the physical symptoms of stress...So I have started the search and it is really hard...I have had panic attacks just thinking about it,can't even talk much about it. I have been to several places. There are several homes that care for 4 to 6 people in our area, meaning within a few minutes of where I live. All have been clean, residents well cared for but one I didn't like as it was stuffy. The other two were terrific. Very bright and cheery, Christmas decorations up and stockings hung by the fireplace with care....both really really nice. Then saw a place in our area called Casa Rosa..gorgeous...beautiful grounds, 3 to 1 staff, all the whistles and bells, two doctors, who call on the residents ( one of them as it turns out is my PCP) and then I saw another facility about 30 min from here that was also very nice..all very costly...The two big places about 6 K a month, the others around 4500/mo. The big issue I am running into is that my DH is on insulin and most of the places are " no poke" meaning on top of it all I would have to hire a nurse or come in myself to administer the meds...nurses would be about 25 bucks a visit. Then one place said the Cpap maching might require a waiver as it is considered a " life support device. So there are lots of things involved in getting on a waiting list...have to have the doctors statements. And some places cost 500.00 to get on the wait list and cost 4k amonth and you have to furnish the furniture, others let you put furniture in if you wish or use theirs...one place costs 1000.00 to process and get on the wait list and one costs 3500.00 to evaluate and do all the administrative processing... We will not qualifiy for aid and attendance or medical because my DH income is too high..in fact his care will take nearly all of his income and I will face trying to live off interest income...hahaha...anyone taken a look at interest rates lately? I don't sleep well now, worry about how I am going to pay for all of this when the time comes...and I'll tell you, I had a wake up call about this planning just this morning when I nearly slipped in the bathroom and had I not regained my balance and hit the floor backwards I would have had a skull fracture and where would DH be then with the girls not our our coast?? and I have no family to help out!!! Even if you don't face placement for years, don't put this off...no one knows when we the caregiver could be in an accident never mind falling ill with something like heart attacks.
This is a very timely discussion for us right now. DH has been having difficulty sleeping throughout the night for almost 1 year now. He has a live-in aide but the aide has been threatening to quit because he needs to sleep at night (I agree) and told me he refuses to risk his health for a job. I certainly understand but if we can no longer have a live-in aide because DH doesn't sleep, I will be forced to place him because the cost of 2 ft aides will be prohibitive.
In my never ending quest to consult geriatricians/geri-psychs to help DH to sleep through the night, we met with a different geriatrician hoping he can recommend some type of medication regimen to get DH to sleep. While I was chronocaling DH's history and not sleeping pattern, out of the blue the physcian asked me what were the reasons I didn't want to place DH in a facility. He said "Is your reluctance due to feelings of guilt/abandonment, financial, emotional, etc?" I had to think about it for a while and finally responded that I feared placement because he has had a history of agitation and aggression and I did not want him ultimately placed in a psychiatric nursing home because NH's and ALF's couldn't handle him. He challenged that answer and said if it's the best place for him why wouldn't I want that? I finally told him I don't want to place him because I cannot handle it emotionally since we have always been best friends and I don't know if I could handle having him in a facility. The second reason was for financial reasons - that we have enough assets for private pay but that would leave me with no money and I have a difficult physical condition and I will need money to take care of me. In any case, it forced me to think introspectievly why I don't want him in a facility and what actions I need to take now to ensure he gets placed in a facility of my choosing should/when the time comes. I cried all night after his appointment....so I know the pain we are all feeling as it becomes more of a reality that our spouse will need to be placed.
LFL...Hugggss and more hugggsss I can hear the pain in your post. So sorry you and so many more have to be considering placement. It seems like most everyone is going through this decision. When I was drowing on my pity pot for myself because my dh died in Aug. I have come to realized how fortunate I was. I didn't have to place him and I knew that time was nearing and I had been looking at various places and sorting through my options. For all of you that have to place their sp you have a double hurt...first placement decisions and then the end of life grief.
First, as hard at it is, we all must face the facts that AD is a terminal illness and we will loose our spouses one way or another. My only advice to you is to face the fact as difficult as it is and start trying to look at your dh in a more detacted way. Like this is just part of the process and in reality it is...you can't hide yourself and your feelings in the sand. I knew and felt my dh (as much as I loved him and as good as he had been to me) he was NOT the man I married and never would be once he started going down hill. I then began to think of myself and my welfare. And, I wanted him to be at peace...he was not living the life he wanted. Was this easy?? NO...but, I do think it made it easier for me when the hospice doctor said he wanted to take him off all his medications and that the end was getting closer. I actually felt a sense of relief with clouds of despair. Ask yourself these important questions...is this the way your husband would want to continue living?? Would he want to see you so hurt and maybe become physically ill?? Only you can answer these questions and each case is different. Hope you can find some peace in your decision....remember you are important too so take care of yourself...Hugggs
My mother-in-law and sister-n-law came to see my DH today (they live out of town). They have not seen him in 8 months, since he went into the nursing home. He was entirely different 8 months ago; he has declined really fast. He doesn't really talk, falls asleep, walks stooped over, etc. I've been telling them how much he has declined, but I don't think it sunk in until now. So hard to watch someone who has not seen him in a while - plus the whole nursing home atmosphere is just not where you want to be if you had a choice. I am paranoid they think I am a bad wife for not keeping him at home - but as you all know, eventually, you just can't do it all. Thinking of you Joan!! Such a tough time, but you are making the right decision. I cannot imagine having to place both my father and husband at virtually the same time... big hugs!
Mimi, One thing I have learned is that as the disease progresses - the surroundings, activities, etc. are not going to matter to them... just to you. I was all worried about the amount of activities when I was placing him, but now my DH can't do any activities anyway. I would look for a place that is clean, the staff is good and that you feel comfortable visiting.
Torture is the right word for this all. Now I have the family seeping through the cracks and undermining all the efforts.
For all of you that are having to do this, how I wish that it can be done with support from others, so that you do not feel so bad. I look to the heavens now as not much else helps. But we do, we help each other.
A few of the lessons I learned, re: placement, was that the peppy, attractive marketing rep will NEVER EVER interact with our spouses once they are placed. How many of us expect everyone to be like the Marketing rep. Same goes for the beautiful, chandelierd foyer in the facility. How many residents do you see sitting out there?? NONE!
Another lesson was that when you make an appointment to tour, everyone is prepared and "on stage". One group is bouncing a ball in the air, another group is playing a shuffleboard game together, others are working on crafts. When I'd pop in and insist on touring 'right now', I'd find the residents sitting in a room, silent, ignored, staring into space, often with crumbs on their chins,.. and sometimes smelling of urine.
Which do you belive is the 'real environment' at the home. I remember one dead 'give away'... a resident came up to me and asked, "Please, may I go back to my room for just a minute. I left my baby in there". She thought I was Staff, and she had been told to come out of her room and be with the others.
It was a former 'marketing rep' for a large Care Facility chain who gave me the hint to show up unannounced. What a difference that makes!! She told me that the staff was always alerted when a prospect was expected to show up for a tour.
Lately I've been really torn about placement. Several months ago I wrote about finally giving myself permission to quit doing the daily caregiving. And still I've made no move toward placement. I just can't do it…yet.
The first time I took DH to respite, I cried all the way home, and for most of the rest of that day. I felt like I had done something terrible to him. But last night I was so exhausted and stressed that if somebody had stopped by and told me that they had a vacancy somewhere and would give him a ride there, I would have thrown a few things in a suitcase for him, and then fallen into bed for about a week. But I know that the morning I got out of bed I would regret that decision, and feel like I had done something terrible for putting him in "one of those places". I know in my head that it's the disease that's moving him toward full-time care, but it's not the disease that has to clean out my husband's closet and sign all the papers for the nursing home. And it's not the disease that has to tell him that he's never coming home again. It's my heart that's having to deal with these things, and coming to terms with this decision is breaking that tired old heart.
I think if there was one thing I wish that "civilians" could understand about being a caregiver, it would be this nightmare decision almost all of us have to make. The decision seems so obvious to an impartial observer, but we are not impartial observers. We are moving ever closer to the death of our husband or wife, and torture really does describe what this decision is like for us.
It is true, what Shannon says...I was concerned about things like, can he have a glass of wine at dinner? Will there be people he can talk to? But his downhill slide was so quick and steep that those things became irrelevant rapidly. So it comes down to whether the staff seem attentive, competent, and caring, and things seem clean and well-run.
Now, as it happens, there IS a very peppy marketing rep at our ALF (part of the Sunrise chain,) and things do look quite done up with a lovely staircase and chandelier in the foyer. (You should see how they decorate for the holidays!) These things do not matter to Jeff who is in his own little world, and they do not matter to me. However, the presence or absence of these aesthetic details are not make-or-breakers. I think it's a matter of good management, a tight ship, and staff of an integrity level where they keep each other accountable.
My decision to place my DH was one of those almost emergency decisions. There was no choice for me. Our state Veterans Home is 10 minutes from our house & that is where he was going when the time came. I found out that they do respite care there so I submitted all the paperwork to place him because it had to be submitted for respite. Well thank goodness everything was in place because 2 weeks later I had to place him. I am very fortunate because he is getting excellent care there & because I go almost everyday I am getting to know the staff & they know me. The activities lady & her helpers try to engage the residents & have them do activities, but a lot of the residents are sitting around sleeping. I agree with Shannon, that once the disease progresses & they no longer can even do the activities, then as long as the place is clean & the staff is good & you feel comfortable visiting that is all that matters. And I have to say again that I am fortunate that I am pleased with the Veterans Home where Tom is.
Thank you Shannon for your insight. It kind of puts things in perspective. I was supposed to go see a facility today but schedules didn't mesh so it is off for a week which i good as it has been intense. Right now DH knows our house and that we paid it off and he always comments on how nice the house looks. Me thinks he needs new glasses hahahaha...and he always is telling me how he appreciates me and is generous with little hugs and kisses which were not always his way..not that he didn't care he was not demonstrative like that...so I ain't complaining about that!!! He is always thankful, says so, tries to make things easier...he is doing his bit...just that short term memory thing.....but he is cheerful and of happy heart..so I have it pretty good save for just getting tired. At the last neuro visit the doc said I have not accepted his illness...I thought that was odd. Shucks My mother died of it, my favorite uncle too...and an aunt by marriage..what don't I get? I guess he meant because I delayed in searching assisted living arrangements but after my near accident I do see how important it is to get something set up, then not dwell on it anymore knowing he will be safe...and yes he is not the same man he was...none of us are the same person we were when we first got married...but there is still a lot of him inside there that manages to escape which is always a present.
NancyB* You are right about showing up without an appt..I have done that 3 times to 3 places..all have been just as they were when I had the appt so that is good news. Casa Rosa was one of the fancier places with the huge inviting room and actually residents are in there and that is where they have their meals! The rooms are lovely, clean and even though it is costly..it is what is says it will be. You should see the kitchen! Would I love to have that one!!! And it looks like one in a home not in an institution..but you are spot on..show up when they don't expect you.