We have discussed this before-but as I just got home from visiting my husband I have some new thoughts. We are at stage 6. First-we have long term insurance -otherwise this would not have been an option. The entire facility is for dementia residents. The more involved are in Bill's unit-most on hospice care. Someone is there constantly to keep them safe. An activity director is very familiar with dementia. They are getting their own therapy dog. For the most part the residents are tolerant of each other. They babble together and seem satisfied to have some one to listen. It is better than being home alone with no stimulation. I'm sorry it had to come to this-but it did.
I had to put my husband in a facility a year ago. It was no longer safe for him or me with him at home. It was very hard on both of us at first but over the last year as he as continued to progress, I am comfortable with the decision. I never promised him that I would keep him home until the end. I had done enough reading and learned/knew that there might come a time when having him home was not the right choice for him. I truly believe that loving a person means finding them the right care whether it be me or someone else or a facility. The first place was only 5 minutes from home and that was terrific as I could easily see him every day. He progressed and got more and more combative so he was admitted to a psych ward for 2 months. That was 30 minutes from work and home. They also had very short visiting hours that didn't really conicide with my work schedule. I got the doctor's to agree that I could see him after normal visiting hours and was able to see him most days. We were able to get him to a better facility. This one is also 30 minutes from home but only 20 minutes from work. He is in the right place for him and doing as well as can be expected for someone who is progressing very rapidly. I still see him most days and a couple of days a week I do a long lunch and see him then so I can get home a bit earlier. It is so sad to not be able to have him at home, but having him in a good place and well taken care of is much more important. Good luck.
P.S. I do bring one of our dogs to see him occassionally. He doesn't really remember her but she remembers him and is always so excited and happy to see him. Many of the other residents there like to see her also. She is a somewhat shy dog but I am so impressed with how well she does with the various residents that want to pet her. The best part is when my husband realizes she is there and just reaches down and pets her.
therrja-it is so nice that your husband and pet enjoyed each other. I brought my 15 year old cat to see my husband and it was not a happy visit. Husband didn't know what the poor cat was-made no effort to pet him. Cat was not happy being put in a crate and then poked at.
I too am sorry that I had to place my husband, but, I know I made the right decision for both of us. When my DH went into the Care Facility, he was in the Alzheimers Special Care Unit. My DH would wander all over the place. He started to have problems with walking and one day got his feet tangled up and fell. He broke his hip in 9/07, in 12/07, they made the decision to move him into the larger area of the NH as he was no longer a "Flight Risk". He is doing quite well. There are still alot of AD residents in the area my husband is in now and most are in wheelchairs and not really able to move themselves around. To me, they do have their own language and seem to communicate to each other. I cannot understand a thing they are saying sometimes, but, they seem to answer each other, etc. One lady though, thinks I am her favorite niece, Fran. Everyday I go in she calls out to "Fran" and wants me to come over to her. I wasn't sure who Fran was at first, but, I ask her daughter who she was and she told me. There is also a lady that thinks I am her daughter and cries if I do not walk right over and talk with her. There is also a man that thinks I am his wife !! Yikes ! I also feel that my husband is getting alot more interaction from the other residents, other family members, and the Staff. He seems to be doing quite well, despite the AD. They try to keep them as busy as possible and have so many fun things for them to participate in. They got the Wii System in and the residents just love it. Some can play, but, most just sit there and watch other people play and they just laugh. I also take our little Shih Tzu, Fancy, in to see him sometimes. We have had Fancy for 12 years and he loved that dog so much, but, now he hardly even pets her. It is so very sad as Fancy still remembers "Her Daddy". I take her anyway and he will pet her sometimes, but, the other residents just love to see her.
After a year, I am still struggling to get my life going again. I still live most of the time in the AD World. I am trying to get somewhat of a life back, but, it is hard to start over again. Oh well, like everything else I have had to deal with, I will get past this also. Bluedaze, if it was not for our LTC Policies, I would not have been able to offer him this type of care either.
I am in the process of placing my husband, and struggling with the decision...this is so hard. Did you initially second guess whether the time was right, or were you comfortable with your decision? My husband is about mid stage 6. The memory clinic doctors have told me it is time (back in June). I wanted him to be well enough that he can make an easier transition, rather than waiting for some kind of crisis that forces the issue, and I wanted to be able to "pick" a place that seemed right, rather than have to take whatever was available. It all sounded logical, but now I question whether it is too soon. Sometimes, I think having a crisis and being more or less forced into placement would perhaps make me feel less guilty. An opening came up way sooner than I anticipated; everyone tells me to take it. Wow...I just underestimated how rotten I would feel! There is just no way to know how he will do.
Did anyone else make the decision without a crisis situation?
This past weekend my husband had to go the the ER twice because of his aggression.they placed him in a hospital an hour away in a psych ward to evaluate his medications.this was Friday. he hashad several seizures and had to be sedated almost everyday. I was told that if they could get this under control he might be able to come home. But he seems comfortable with the other residents and does not really say to much to us when we are allowed to visit.I know this is best for him but why does it hurt so much????? we have been togther for 42 years this is the most we have been apart . the house is so quiet without him.. I worry each minute what is happening...I am lost......
Marge-once you have made the the decision the time is right-no need to second guess. We went by crisis. I had already done my homework and felt the time was not yet there. Oh how wrong I was. In a month's time the sh-t really hit the fan. While I was looking I felt placement was a long way in the future. Husband totally crashed and was a danger to himself and others. In a few month's time he had two psych and one dementia admissions. Hindsight being worthless I now feel if I had placed him when he still had some understandting the transition would have been easier for him. How frightened he must have been. Strange people and surroundings was too much for him to cope with. Bill is approaching stage 7 and nothing matters to him any more. The monster has him.
Marge, the best advice I was given was it is better to place them when there is still something of them there to understand and start to feel comfortable in their new surroundings. I did do that and was glad I did. I also waited a bit too long as I was physically and emotionally exhausted when I finally did placement. I am still in recovery from that and it has been a year and a half since he was placed! It took a long time for my sleep cycles to begin to approach normal as they were so disrupted while he was still at home.
If you are comfortable with the placement criteria or have set criteria for yourself, you will know when it is time. The doctors told me that I would know and that is exactly how it turned out.
Unfortunately, us feeling guilty is often a part of what we go through when we need to put them in a place to take care of them. It kind of goes against that "sickeness and health" part of the wedding vows. For people who promised that they would never put their loved on in a facility, it has to be even more difficult.
There was one very positive side affect of putting my husband in a facility. As they were taking care of him, I got to relax and enjoy him for a while longer and remember how much I loved him. I also got his dresser, his closet and it is so much easier to make the bed now. I even got to get rid of some of the raggedy clothing that he just wouldn't part with.
Your attitude towards the whole thing can and will make a difference in how well he reacts to it.
Napa, I am so sorry for what you are going through ((big hugs))
I think it is a very personal choice to place them or keep them home. Only you truly know what is best for your spouse, and yourself. I plan to keep Lynn at home. I will fight with everything I have to do so. As much as he needs to be here, I need him here as well. But, I don't live in Disney land either... I know something could happen that could force a placement. For that reason I do have his name on the VA list .. just in case. They have an excellent dementia ward here.
Lynn gets plenty of stimulation at home, too much he would say LOL My sister and her two children live with us, so there is always plenty of activity going on. He likes to play games with us. He of course can't even play go fish without help. But, we dont mind in the least. We still have a ton of fun! My whole family plans every activity and get together around Lynn's comfort zone. We are lucky! I know not all families are willing to do this.
For those of you who have had to place your spouse, my heart goes out to you. It must have been one of the hardest choices of your life. Marge, I think we would all like to keep our loved ones home with us. But, if you feel it would be best for your husband and yourself, please try not to feel guilty about it. You are doing it out of love and concern for him. We will be right here to help support you ((hugs))
I am not at the decision door yet, but I made the decision very early into this...one day there would be no choice. I have to work and we have no children or extended family that live nearby. For his safety and care, I know this is what I will have to do. I try to look at it like anything else that he needs. He needs medication and I don't hesitate, because I know this is what he needs....food, clothing, whatever... It is all about him and what is best for him. As hard as it will be to do this, I know I would feel so much worse if something happened to him at home because I tried to keep him home. My biggest worry is just what you have said...how will I know when the time is right?
Thank you all for your input. A little background...I spent 8 years as a caregiver for my mom, and was determined to take care of her to the end. I ended up having to place her after a hospitalization; she was so disoriented and so far in to the disease that I always felt the home had trouble relating to her... she was considered total care by the time she was placed, and unable to make any kind of connection with the staff. I always felt that they just looked at her as a lot of work, and couldn't even get a glimpse of who she was. She only lived 5 weeks there, and it was not a place I would ever have chosen if there had been any viable options.
I swore I would not do that again! My husband and I had even discussed it early in our journey. But I took him for an assessment last week at the facility, we had lunch, met people, etc. He cried and cried afterwards...why was I doing this, he was the most lucid he has been in a while! It was horrible! Any yet, the facility, the doctors, everyone tells me it is time. I truly think it may be easier for him to adjust. Yet we have been married for 43 years, and true or not, it feels like I'm abandoning him. I think I just need to work through it; plus get everything organized to actually move in within the next two weeks. To add to my pity party, our home was burglarized last week and that itself has been a trauma.
Marge so sorry you are going through this, and to have your house robbed on top of it! Yikes! I don't know if it will help, or hinder your choices.... but I thought I would share with you what Lynn's case worker and nurses have said to me about keeping him home. I too have a great fear of a major decline causing a forced placement.
Lynn's case worker and nurses have all assured me this would not happen. If I truly wanted to keep Lynn home, extra help would be provided so that I could do so. If hospice was needed, they would be here immediately and for as long as I felt needed, even 24 hour a day care. This has brought me much peace, as my desire is to keep him home. Lynn's children are backing me 100%, as they know their Dad and know a NH would kill Lynn in spirit. We have all our ducks in a row..... just hoping we never have need of everything.
Their are those who do very well in NH. My sister has worked for NHs for over 20 years now. I know the love and devotion she herself gives her patients. Angels on earth that can do that type of work! My Grampa didn't do well at home, even with extra outside help. When he reached the stage where he no longer knew any of his family for well over a year and needed total care, he was placed in a NH. At this point, I don't think it would have mattered had he been placed earlier. Once they reach that stage, how can it matter? They can't be involved in anything, home or in a NH.
I can "hear" how much sadness this is causing you. I just can't imagine having to face this. Some of my family and friends say I am a saint for keeping Lynn home... but the truth is, I am too much a coward to face not having him here with me. I do it as much for me as him. Go with your heart. As you said, his care and safety have to come first. I am so sorry he picked this time to be so lucid.. must have broken your heart! Keep talking, we are here to help any way we can.
I'm not sure Imohr. I only know what I was told regarding Lynn's care. It is rather calculated and cold... but I was told the state realized how much cheaper it is to have in home care instead of having care in a NH. So, they are offering more and more in home care services. Regardless of why the services are available, I am just thankful they are! I have some peace now. When the time comes, I believe I will be able to keep him home until the end.
I do not know if it is different by state? I do know we recently had a relative pass away while on hospice. For the last 2 weeks of his life, there was either someone from hospice, or a nurse assigned by medicaid at the house at all times.
Thanks Nikki for that input, i intend to do the same here for my DH. like you say, i think its more for my sake too, it would create more distress for BOTH of us having to place him but like you say, i am living reality too, and know this could change as well. its good to know both our goals are the same. i intend to use hospice the way you describe and bring outside one-on-one care when needed. i hope this is viable. it would distress me to no end to know i couldnt have him near me..divvi
Marge, you are the one who can tell best when and if it is time to place your husband. If you can no longer give him the care that he needs, it is in both of your interests to place him. If caring for him is causing your health to deteriorate, then placement may be the right option.
I am assuming that you have explored other options as day care, home care, hopsice to keep him home. If not, before placing him, these are options that may allow him to stay home longer and should be explored.
Divvi, choosing to place my husband was heartbreaking. I had one saving grace that helped me get through that day. I gave him a shower that mornig so he would go there all nice and clean and he was his usual horrific self while I tried to get him through it. That helped a lot in reminding me why I was placing him. The other thing that helped is that the first place he went to was 5 minutes from home so it was easy to go and spend time with him. I don't think I would have done as well if the first place he went to was 30 minutes away from home as he is now.
therrja, I can imagine the grief one feels the day they take their loved one in for placement. i know there is very sound reasoning for doing so and each of us has that decision to make with regards to our own well being. yes it makes it easier to have them that close to you and the ability to visit often. i look for guidance from those of you who have your spouses in placement as i know its not a sure thing i can keep mine at home like i want either. reading about your pain and the agonizing decisions it takes to accomplish this helps the rest of us to understand how important the decision can be. my respect to each of you who have made it thru this heartbreaking decision. divvi
My husband hasn't known who I am for years. He is living in an excellant dementia facility with people with the same disabilities. The staff treats them all like family-and I do, too. When I bring treats or clothes it is for anyone who needs them. The best part is that he isn't alone sitting in from of the TV napping. The men and women interact in their own way-but at least there is some activity going on. The visitors treat everyone like family and we sometimes even have something to chuckle over together. Don't think it's all peaches and cream, though. Today is first day that I cried. I was talking to Bill's hospice nurse. Bill lookes so pitiful that it breaks my heart. I laid down with him in his bed and told him I loved him-I have no idea if I reached him or not.
bluedaze, I am so sorry. It has to hurt something fierce! Extra big hugs for you ((hugs))
Sigh, it is all so sad isn't it. Each of us has to do what we feel is best. Either way has its own heartache. No way around it I suppose. Divvi, I like having someone who has the same goals as me. Gives me courage and strength. Thanks for that!
You must be psychic! I don't think I mentioned my health...in fact, I became very ill caring for my mom and the doctors and myself think it would be better if that didn't happen again. I think I am handling the stress pretty well, but somehow my body does strange things...
marge, I don't think you should feel bad about placing your husband. Sounds like it might be easier for them to start adjusting at this point. I took care of my Mom for a number of years and it is very hard on us and the rest of the family. Stressful, having someone else in your home 24/7 even if it is a relative. You know how stressful when your kids come back home.
I missed my Mom but I felt like I was released from jail because for the first time in years I could go someplace without hiring a sitter for her. My husband then took up the slack but I am not as confined as I was with both of them.
I don't think we should sacrifice our health taking care of a parent or spouse. You see it all the time.
bluedaze - I truly belive that under all that fog that they do know we are there and do gain comfort from us being there. Sometimes I think of it as an action for his soul. I always tell him I love him, always kiss and hug him hello just like I did before the AD.
Several years ago, we put down a cat who was very ill. At first, I was just going to let the doctor do it and not be there as it is very hard on me. At the last minute, I changed my mind and said that the last thing he should see is someone who loves him so we both stayed with him. I am glad we did that.
I employ that same idea in dealing with my husband in the facility. I make sure that he is being physically taken care of and then I do what they cannot - I talk to him and let him know he is cared for just like I always did. I think that my acting "normally" towards him offers a lot of comfort to him.
I’ve been checking out ALFs with specialized care for dementia and Alzheimer’s and have one that would be perfect for my wife. In fact I’m now first on their waiting list and I’m not sure what to do when a place for her becomes available. She is in late stage six and seems to be on a plateau for quite some time now. I feel that placing her would be the best thing to do for her and for me but I feel guilty for feeling that way and that I would be abandoning her even thought I would visit her often. It’s not really a safety issue, she did leave one time and went over a mile before being found but that issue has been resolved by keyed deadbolts and setting the home alarm system when necessary. Right now I have in home care for her for eight hours, three time each week and day care for about six hours, two days a week. She is not always very happy with the care she is getting but accepts it and sometimes even seems to enjoy it. I really don’t like having a care person in the house and day care is two round trips of 40 minutes each way, so it’s hectic and I don’t feel like I’m getting much respite. I feel that I’m being selfish and that I should want to keep her at home as long as possible and my stomach just churns at the thought of actually placing her. We’ve rarely been apart in our 45 year of marriage. Like all of you, I just hate this @#$% disease.
Jerry, I know how you feel. I place my husband is January. It's only about 10 minutes away so I can go quite often. He still know me, thank goodness. Today when I got there, the aide was feeding him. She asked him who I was and he said "She's mine". It still hurts that I had to do it but it's better for both of us. I'm diabetic and my sugar was going way up from the stress. We certainly never expected this when we got married, did we? Didn't even think about it.
Jerry, I also know how you feel. I placed my husband March 6th. He is in an ALF for dementia patients, where he attended Daycare, which is about 5 minutes from my home. I visit every day, but still feel guilty when I leave...even though he doesn't think of me more than an aide...actually, he pays more attention to them now. I know it is because they spend more time with him, however, it does seem weird. I know I am unable to give him the proper care by myself, which my brain knows, however, my heart doesn't. I never expected at age 59, my husband would be living in ALF & I would be living alone. I also, detest this %$#*^$@! disease!!!!!
Jerry: You have all the right doubts and feelings. I placed my wife on Feb 10, and even tho I knew then, and know now, that it was the right thing to, I still have regrets and occasionally guilt and I want to bring her home. Carolyn and Kadee expressed my feelings also, and I especially like the closing sentences from each one of you.
I’m feeling better about the possibility of placing my DW after giving it a lot of thought this morning. I know that before Alzheimer’s if we would have had a conversation about placing her or her placing me, we both would have said we would want to be placed and not be a burden on the other. And that we purchased long term care policies so that there would be no financial burden. We just had no idea that it would happen so early in our lives!
Jerry, I placed my husband 3 1/2 years ago. It was no longer safe to keep him home and I was so exhausted that I couldn't care for him at home any more. I regret having to place him but do not regret placing him. Placing him enabled me to enjoy my husband again instead of being caught up in the grind of his care.
Placement has its own worries: you have to be vigilant and realize that very few institutions can give the care that family can. Yes, there comes a time when it has to be done, but know that you have to still be involved. What it does allow is that the caregiver can get more rest and take better care of themselves so that there aren't two victims.
I am thinking about placement within a year while he still has some awareness of his environment. But it's hard to choose the moment. I think it would be the right thing to do but keep thinking: not him, not yet. And I CAN manage him, sometimes more easily than others, but right now for instance there is no real issue that would require placement. I think there will have to be an issue to get me to do it.
Jeanette--I hear you. My husband is mid-late Stage 6 and many of our friends have made references to placement, as if it is inevitable at some point. I am hoping to keep him home, perhaps the whole course of the disease, but no one can predict the future. However, in this country, I think people assume that placement is the norm.
I am trying so hard to keep my DH home. But I must admit sometimes in the middle of the night when he is giving me problems I am ready to put his ass in the car and drive him to the nearest NH and put him on the doorstep, ring the bell and run. Then the next morning I get up and say I can do this. I know there will come a time when I will have to take that step ( it will be in the daytime) He will be 88 in Dec. and before I know it I will be 83 and physically he is in better shape than I am.
There were statistics somewhere on the numbers placed versus those that stay at home. The number placed was much smaller than those that stayed at home. It kind of surprised me. Many people are very successful at keeping their person home until the end.
My answer on placement is it comes down to what is right and best for the person with the disease and those taking care of them. Mary75 raised the very valid point that placement comes with its own set of problems and worries.
It seems that most of you want to keep your LO at home if at all possible. I was up with my DW almost every hour last night and this morning spent 2.5 hours cleaning the bath room of feces all over the toilet and floor, and cleaning and showering my poor dear wife. When she goes to the bathroom on her own without my guidance, she doesn’t know how to sit on the seat properly which causes all kinds of accidents. I just don’t see how I can keep her at home any longer!
aww jerry. you are in the real throws of bad times when they are still able to go to the bathroom on their 'own'. yipes. its so much easier once they are in depends actually. and even less trouble once they are bedbound sadly. i remember the times well of doing poo duty in the wee hrs and then again once it was cleaned up and DH showered. imo it takes 24hr vigilance either by you and or a helper/aide who can move them to the bathroom every few hrs on cue to try to prevent them going on their own. its probably time to have her in fulltime depends now if she is unable to maneuver the bathroom properly. it will make it easier on you. also if she was up all nite maybe some other medication for sleep. melatonin is otc be sure to consult her dr about adding any sleep meds. sounds like you are exhausted. hope you have some help coming in to relieve you! divvi
Thanks divvi, my DW has been in full time depends and extra absorbent night time pads for at least the last year or more, but she will still try to use the bathroom on her own. When it was just urine incontinence, she didn’t try to get up at night, but now that it’s fecal she is trying to go on her own. During the day it is usually okay if I notice and help her in the bathroom. For the most part, she is in late stage six.
jerry do you think she could sleep in a hospital bed at this point? the rails on the sides may prevent or rather deter her from getting up and out on her own? if shes late 6 maybe your dr can get her a bed now thru medicare. at least you would hear her trying to move and get up and maybe help her to the bathroom. there arent any real solutions when they still want to go on their own. divvi
I am looking for respite care for one week for my DH. Two assisted living (for AZ or other dementia) facilities are within a short drive and offer respite care. I thought I had a week of respite lined up when the director said casually that 100% of the respite patients never go home again but rather become full time residents! Now I don't know whether to go with respite or not. I am approaching the end of my rope and may well place him during the next 6 months or so. EVERYONE whom I have talked to about placement (those who have already placed their LO) has said that they wished they had done it sooner rather than later. I have also heard and read that typically a catastrophic event pushes you over the edge rather than a calm rational decision. Don't know if I want to wait for a catastrophe. I wonder how frequently reason prevails over catastrophe?
former soulmate, I wouldn't the director's comment sway my decision. I think that was a rather poor comment for her to make to you. She might have been hoping you would go ahead and place him now. If you can do the week I think you should because you need the respite. Mary has told us how helpful it has been for her. Then, you can make a decision later about permnant placement if you decided to do so. Good Luck.
i agree with Lois about the directors comment f soulmate. i think she was meaning it in a good way- that they see its so beneficial to the patient and caregiver that it becomes a choice. i would take the respite if you are at wits end. that can never be good to reach that breaking point. some time away will help you come back refreshed and see things in a better perspective. have a good time away! hugs!! divvi
former soulmate - like lmohr I agree not to let the director influence your decision too much. You will have the final say. You need the respite and maybe after a weeks rest you will be able to tackle the caregiving again. Maybe you find that you enjoy freedom and/or peace of mind it will bring you. Then make your decision based on what you think.
My husband entered a nursing home on July 1st. It was a safety issue. I truly could not keep him home, and boy did I feel guilty about it. I think everyone who has to do this feels guilty. Even in situations like mine where police and ambulances and hospitals were involved.
It has now been long enough that I understand that it was what I had to do to save my own life as well as his. The only reason he survived leaving the house that day is that one of my neighbors was able to stop him in time when I could not.
I managed to miss the whole diaper issue and I felt guilty about that too.
Not really ready to talk about our situation yet, but noticed this thread...
I placed my DH 8/16 before I had back surgery on 8/24. He is adjusting so-so, I'm in a horrible emotional dark hole, not sure if my surgery will prove successful, not sure if placing him was the right thing to do (yes, I know it was), not sure if I'll ever quit crying, not sure of anything except that I'm so glad to be rid of the "bad" stuff and that I miss him terribly. I know that my physical and mental wellbeing is at a rock bottom point and that placing him was the right decision I just wish it hadn't come to this. I fully expected to keep him at home til the end but goodness, that could be years from now and I wouldn't have lasted...
This is a very tough part of AD I'm trying to come to grips with too. I don't see how we can avoid going through turmoil and guilt but I think it's important to try and deal with it. We are being practical and strong (as each of us can) with every other part of this disease and we must be here also.
I have budgeted that I will be exhausted somewhere and realize that when I can get her into a long term care facility it will make my life easier. These terms are relative though. Easier is up from one of the hardest roles in our society. Then the burdens turn more financial.
Placing our spouse is a super hard thing to do and like all the other challenges like cleaning the feces (which I've now done too once) we have to get through it.
Jerry, I hope you get through it blaming the disease and not yourself although I don't think there's anything wrong with being angry. At least I feel angry. Both our lives are ruined by AD. Having strong feelings about that has to be healthy. We have to steel ourselves up and go through with placing them when we arrive at that point.
I think one of the important things is that the relationship/marriage had value because the two people involved gave it that value. And I do feel it's important to stand by my vows. Also I love her terribly. But we just have to face the truth here. Our loved one is virtually gone because of AD and to think in the old normal terms isn't realistic for anyone. The two people that were - are no longer. The horror of this disease is that some of them remain before that is taken too. Most all of our spouses would desperately want us to survive and to be ok in life. Caregiving takes away the perspective that was there when the value of the relationship was being created by the same people now facing this and unfortunately at the point where you are, at least in my mind, that relationship is much more memory than fact already. It's a terrible disease.