When do you guys feel it’s the right time for a nursing home? Or is it ever too soon? It’s not like this disease will get any better, as it keeps progressing, I think this question is challenging, but I would like to hear from you about it. Thank you.
Hi BrightBod, with this disease I do not think it is possible to say when is the right time because each case is different for each person. For a while I felt sort of like I placed him too soon. He did not have the physical problems and was still talking but now since he has been placed for 9 months I see his decline and I am so glad I did what I did. He has toileting issues and is engaging in bizarre behaviors that he did not 9 months ago. My husband is in assisted living and I knew he did not need skilled nursing care that a nursing home provides. I think every caregiver knows when to place. I see some of the caregivers here who are dealing with so much more than I did and I just say God bless them. I chose another path. I knew I did not want to deal with pee and poop and I never compare my ability as a caregiver with another. It all comes down to choice. For me I did not want to be consumed by the disease and I did not want people in and out of my house all the time as I have a small condo. It is just a choice and whenever the choice is made it is the right one.
Brightbod I was thinking the same question when I logged on this morning and saw your post. I have been reading the other post of how do you tell them or go about taking them. My DH still knows who I am. He is beginning to have bathroom issues. He paces all day and rummages through closets and things aimlessly. He can talk, but does not understand any conversation. He puts clothes on wrong or wrong season. He cannot fix anything to eat or know when it is time to eat. . I am tired.
My worry is it is to early. I am approved for someone to come into the house. I have put this off for some reason. Is he still to aware? Sometimes he looks at me like he doesn't know who I am. Will placing him give him people who can get him involved in activities beside walking around the yard all day? I just do not know. I know it is different for everyone. I just wish someone would tell me when to like with the not driving. Again I am so tired.
I never placed my DH, but had the help of our DD who still lives at home. Without her it would of been totally different. I waited to long on getting help in. We had Hospice and could of had help come sooner. I did get someone to help with showers. That was such a help. On the first day our aid was here. I stayed in the bathroom while she got DH ready, and as he stepped into the show he looked at me with a sly smile. He no longer knew who I was but knew it was odd to have another woman shower him. I just smiled back and all went well.
I think for most of our spouses if we act like all is ok they will adjust well. Many here have said they waited to long to place. I was to the point that I could not do it at home much longer. I pushed myself to hard and to far.
I don't think it is ever to soon. The declines can happen so fast and catch us of guard.
hello guys, jackiem29, yes I’m here as well to learn from others experience and ask questions, as I have a lot of questions to ask, and so far great information.
I have seen a number of people remark here and elsewhere that they should have made the move to LTC earlier. Often the problem is that we aren't ready, not that our spouse isn't ready.
This is a very personal issue. Often the change is made to preserve the health of the caregiver. Sometimes it is due to the loss of ADLs and not being able to manage at home. Other times it is due to behavioral problems. Or to preserve a home life for young children. Or it is just too dangerous at home. As caregivers sometimes we find we can adjust and take on tasks that we never imagined. Other times we find that certain aspects of dementia are much more difficult to manage than we ever imagined.
If a doctor says you should think of LTC they probably mean it is time and to go ahead.
Moving a LO to LTC facility is not an admittance of defeat or giving up. It is simply changing care of a LO to something that is more appropriate.
Hi BrightBod, As one who has just made this decision, I agree with paulc. There are a lot of different reasons. My own reason is that I can no longer ensure my husband’s safety. He is physically fit, agile, and mechanically adept and I am having trouble keeping him in our house and yard, even with trackers, monitors, and locks. Since the days got longer and warmer, he has escaped several times.
But there are a lot of other reasons that I could give: For several years, my ever-increasing unpaid care giving duties have caused me to drastically decrease my paid work, which together with the expenses of aides and day care, has put us into a precarious financial position. (This situation alone would horrify my husband.) Like many family care givers, I have ignored my own health needs for years. I have had to discontinue almost all non-essential activities. Dinners with my girlfriends, which were formerly monthly events are now quarterly and we have to go to a restaurant near my house in case my husband gets too anxious or tries to sneak out on the aide. Since a disastrous Thanksgiving at my sister’s house in 2012, we have celebrated holidays alone because I could not possibly host them and going to the homes of family members (who live 90 minutes away) would be much too long a day for my husband. This disease has consumed my life.
I am really going to miss him when he leaves our house. I don’t know if I will feel guilty or not. But I will either have to get over these feelings or live with them.
jackiem29, It sounds like your husband is at about the same stage as mine is. My husband goes to day care but if he did not, he would be rummaging through things all day. As it is, he brings tools up from the basement and garden supplies in from the garage.
I suggest that unless you are going to place him immediately, you take advantage of the chance to have someone come into the house. Before three years ago, I had never had any household help, but now I have aides ten hours per week. I adjusted to this just fine. They take my husband out or keep him busy so I can work or rest. They shave him and help him brush his teeh. Sometimes they do grocery shopping, pick up the kitchen, and fix meals.
I was (and still am) worried that it is “too early.” I realize now the stars do not have to be perfectly aligned before I put my husband into a LTC facility. What I was secretly hoping was that by the time he moved, he would be so out of it that he did not know where he was. This is really just wishful thinking. And it may be that whatever brain power he still has will help him adjust to the place.
Another data point for what is such an individual decision. My husband's physical issues have progressed faster than his cognitive decline. I placed him in a nursing home when he needed help with every transfer from wheelchair to recliner, toilet, etc. He would rather have had full time help at home while I worked but I wasn't getting enough sleep and it took two people to get him up when he fell (which was happening almost on a daily basis). He was aware but once he got there he said it was where he needed to be. He followed their rules so fell less and got physical therapy and actually improved for a few months, but his decline is becoming clear again.
Myrtle, I like you was hoping that he would be totally unaware by the time I placed him. But it turned out to not be the case. I have a friend whose husband has been in hospice for a year, is bed bound and still knows her. So I think a person could still be aware till t he very end. Having him not know me would in some ways make it easier on me but I am learning to accept what is and not wish for what is not. My husband has a lot of health issues but he is still ambulatory and for now his issues are stable. Some of the behaviors now is he is changing his clothes 6-8 times a day and taking the sheets off the bed and wrapping himself in them. It is tragic to watch. My husband has adjusted very well considering everything. I always worry that they do not have enough activities for him but the truth is they have activities but he shows little interest in any of them and cannot engage in them. He likes music or presentation type activities but anything like reading or puzzles he simply cannot do anymore. I read aloud to him and he likes that because he always was a reader.
How do you get over the guilt feelings? I've started 2 times to put my wife in a nursing home but backed out both times feeling I wasn't doing enough. She saw me through mental illness until they got my meds adjusted. She still has control of her bowels but not her bladder. She wants to go home often and I have to explain that we are home. She sometimes (about once /day) gets a blank look on her face and I have to tell her who I am and our kids and grandkids names and where they live. She looks forward to Skyping with a daughter or 2 every night. I have a caregiver who comes in 3 days a week, 3 hours each day, to help me out and let me go to the grocery store and do errands. I have double deadbolts on the doors, a security system that tells you when a door is opening, a service dog, and a gps that she wears. One of my daughters, my sister, the neurologist and other assorted people say she should be in a nursing home, but I can't turn loose.
welcome theporch. it appears you are new here. its sounding as though you basically do have a lot of support and help at home. many of us have our spouses at home thru the end. but if they are aggressive or unruly then it becomes literally impossible unless they find the right combo of meds to ensure safety. the guilt can be overwhelming as you see many here write often of their feelings upon placement. after a while most realize it was the best choice for them both. some just don't have the stamina or have medical reasons of their own and its for the best. but I think you will know if and when the time is right. only we know our spouses and what our endurance marker is. best of luck. divvi
Everyone before me in this thread has offered great words.
I agree, it is so individual and depends on so many factors.
And a very hard decision. The day my husband went to the facility and then a second one as the first one could not handle his aggression, were the hardest days of my life. Seeing him struggle so much - I will never forget those two days.
Fortunately, by the next day in both cases, he started finding his way. Now he calls the facility home and has never asked or tried to leave with me. He has responded so well to structure and routine.
Guilt - oh yes, lots of it and I realize for many it is inherent in this horrid disease.
It sounds like your wife is at about the same stage as my husband. He will be going in to a residential facility for veterans tomorrow morning.
The immediate reason for his admission is my physical inability to control him. Like your wife, he takes off all the time. Coinciding with this is the fact that his name reached the top of a one-year long waiting list and I had to make a decision. So I decided to do it.
I have done a good job taking care of him. I have about the same level of help that you do but about a year ago I started saying things to myself like, “I can’t do this anymore,” “This is too much,” “This isn’t right.” I saw that I was being “negative” so I consciously started saying things that were “positive,” like “I can do this!” “This is not so bad,” etc. I realize now that all that “negative” talk was the truth and all the “positive” talk was a big fat lie.
I’m physically and emotionally exhausted. My health is shot. I am seriously sleep-deprived. Worst of all is my mental state. I’m always worried about financial matters, with good reason. I no longer have plans or goals. I feel like I am trapped in a theme park called Dementia World. Almost all I think about is aging, death, and managing this illness.
In spite of all this, I will probably feel guilty as I walk out of the facility tomorrow. I guess the only thing that would assuage my guilt would be to have a heart attack in the parking lot. Maybe not even that. But I’m still going to do it.
I never had to place my DH, the time went to fast less than four years. And I had youngest DD at home. But towards the end, I was wearing out. It is now 5 months later and my body is still worn out. The physical pain that I ignored is still there. I let myself go and it is showing. myrtle is right with the negative talk being the truth.
Please remember that as we help our LO not to let ourselves go. It can take a long time for us to fully heal.
I feel guilt is the wrong word. Guilt is when we do something we know is not right. If we left our LO on the side of the road and drove away, guilt would be the right word and feeling. Placing them in a home with people to watch over them, care for them, feed them. How can that be wrong? Sadness yes, but guilt no.
Your perspective on guilt is one I am going to write down and read many times. SO true what you wrote!
Yes, indeed, I did, and continue to do everything in my power to get the best possible care for my husband. By the time he went into the facility, he had calmly threatened to kill me and himself a few times. My whole focus for months was on trying to keep both of us safe.
Now he is being cared for by competent people and tells me most days he has a great life. As I wrote in another thread, he responded so well to structure and routine. He also now takes part in activities he never did at home, such as singing with a visiting choir, and going on bus trips. His life is very narrow but safe and enjoyable to him most days.
He still has outbursts of anger and aggression but others take care of that now. Thankfully as I barely managed.
I am going to let go of guilt. It is tremendously sad all the losses inherent in this disease, however, I will recognize sadness and not guilt anymore.
Theporch - If those close to you are telling you your wife needs to be in a facility, they see things more clearly than you do. I ignored that advice until my body simply said 'no more.' If I didn't place him, I knew I'd have to be placed myself, then who would care for him. I kept getting older and older and he needed more and more. Even after your wife is placed, you'll still be in charge of her care, you'll see her all the time, make the decisions. You're not letting go, just sharing her care, and she can likely still Skype from a facility.
Myrtle - I'll never forget the day I placed my husband, but I don't think I felt guilt, it was more of an overwhelming depleted sadness that it came to this. And--this is important--I could see that thru his tears, he knew it had to be. Within days he had adjusted well. I was the one set adrift, alone, he had lots of attention, activities and company. Things are in your favor that it will work out, but it is hard, we know.
My husband went into the veterans’ residence yesterday morning. He is in a secure dementia unit with about 25 men. The unit is bright and the staff is friendly and attentive and they call all the men by name. The place has a stellar reputation. Most of the men seem fairly high-functioning. I left feeling that he was in good hands and that I had done the right thing. I came home and slept about 13 hours.
This morning I went back and took him for a walk around the grounds. He was happy to see me but not upset to be taken back. I though this would work out OK.
But when I returned late this afternoon, he was anxious and looked as though he had been crying. The staff were busy giving out meds and said he was OK but I could tell he was upset. I took him out to the lobby and calmed him down but I was really shaken. I had an irrational temptation to kidnap him and take him home. But I didn’t -- I brought him back the unit to have supper.
What I am feeling is definitely not guilt. It is protectiveness and a reluctance to let go of him. I was fine when I thought that he was in good hands but my confidence was shaken when I saw him this afternoon.
I remember the first few days as being the hardest for me, and for the same reasons that you have described. It takes a little while for our loved ones to settle in, but they do, and then you will feel easier, too.
Myrtle, I agree with Mary. The first few days were the most difficult for me because he looked pretty lost. I remember someone saying that they take their emotional cues from us. If we are upset, they will tend to get upset. With that in mind, I tried to remain positive, calm and steady with him while he adjusted to the routine at the facility. Good luck with this transition.
My DH did not seem to be upset at all about having to be in the NH. I was very sad that he would not be able to enjoy all the things he loved at home.After a year ,I still get a little teary eyed driving the last 1/2 mile to the home,don't know what comes over me.Since he had pain from 2 cracked ribs he was quite combative when the staff would have to change him,etc.But now he is very happy and the staff is always telling me how much they love him.Like Fiona you have to stay upbeat and not let them see your concern.They will adjust(probably easier than you)They have a lot of people around and you come home to an empty house,
mary75, Fiona68 and yhouniey, thank you for your words of wisdom.
I think that in addition to the adjustment issues, my husband was alone too long during the afternoon, which is his worst time of day. This place has structured activities on weekday mornings and afternoons, but nothing on weekends. I asked our former home health aide to go over there this morning. She brought him a banana (his favorite fruit) and by the time I got there, she had shaved his head and was trimming his moustache and he was smiling. She then took him for a ride.
When I returned in the afternoon, an aide had just taken him for a walk on the grounds and he was happily watching the ball game with the other men. I took him for another walk around the grounds and he seemed very contented.
He really has a lot of energy and needs to move. Until he adjusts to the place, I have arranged for our (now re-hired) home health aide to spend a couple of hours with him on Saturday afternoons and Sunday mornings, walking on the grounds or going for a ride. This was an expense I had not anticipated but I am willing to do it if it helps him to adjust.