So many of us write about feeling guilty about placing our LO. Why should we feel guilty after we have spent years doing caregiving and all the help and assistance we can do. We are only human and we can only do so much. We, ourselves need to decide with the Doctor, when we reach that point and not ruin our own health be continuing home care when the alternative should be the choice.
I know of too many caregivers who ruined their own health by trying to keep their loved one home after they should have been placed. Sometimes the interaction of others might even be better for them. I think Joan has something on the front page about this issue, also. God Bless Each and every Caregiver here who is trying to make a difference by reading and posting on this site.
Some time ago I made a decision that I would not feel guilty about things I could not control. It's not always easy, it takes work, but my mantra is 'I don't do guilt!' I know that guilt is a very destructive emotion. It prevents you from doing the best thing for yourself and, often enough, for others as well. Most CG's wait too long to do placement--not only guilt, but we don't want to acknowledge that precious, dear parts of our life are over. I wanted to be like that elderly couple in the diamond commercial, frail, holding each other, walking in the park. I wanted us to grow old together. You know it's not going to be--no matter how hard you try, no matter the sacrifice--and my health suffered for it. Imohr is right, my DH did do just fine without me. He was well cared for, participated in activities I could not provide--even had a girlfriend. Even tho it deeply hurt both of us at first, it turned out to be the best for both of us. One should not feel guilty after they have done all that they are humanly capable of doing, and yet we think 'if I could just do this, just not do that' and, factually, guilt doesn't change a thing.
of course the comments about placement are correct and we should not feel guilty. but the first day i left my DH AT HOME with the aide from the agency. i got in my car and saw him standing at the glass door mouthing my name and looking very forelorn and desperate.. this was in his own home! i had to go back in and comfort him until he was asleep on the couch i got to leave.i fear i just wouldnt be able to stand the same things having to leave him after placement. i would be like poor nikki, a basket case for weeks and worrying myself to the extent of real personal affliction-i know i need to work on this just in case but each person has to adjust to the idea when it happens. divvi
I don't think I could do it either. I've said if I physically couldn't help him, he'd have to be placed and he seems to acknowlege that. Since he's never been really violent that's never entered into the equation. But we're managing with the incontinence, the adl help, etc.. so for now FOR NOW I'm not going to really pursue it. FOR NOW.
This is I think where it would be helpful to have a little Jeckl and Hyde in us. One to take over and be realistic, pragmatic, while the other can go curl up and cry.
I have to be realistic. With my own disability and health issues, when anything happens to seriously upset the caregiving, he'll have to go into a facility. As long as we can manage with our in-home help, and he can do somethings for himself, and as long as we don't have endangerment issues(for him or me), we'll continue on at home. I believe this is the best environment for him but mentally I've drawn lines that will be the decision breakers.
Guilt? No. Hurt? Oh, yeah! And I have been clear with him about this. He probably won't remember. . .
You know how we say "seen one ALZ patient, you've seen ONE" or "don't borrow trouble - your spouse may never be {violent}{incontinent}{unable to do ADLs] etc.
But on the other hand, we know we MUST think about the legal stuff, the money stuff - but what about the possibility of placement? We can't close our eyes on that. And I know I have, to some extent. I've visited a couple of places but obviously, the problem is that we can't predict what state they'll be in when we find we need to place them. In my husband's case, he has enough physical disabilities that he'd have to go into a nursing-type situation not just a "memory care" unit.. but mentally he should not be with stage 7 people.. Lots to figure out!
It is quite amazing how well they do without us caring for their every need. I thought that placing him would be harder. Maybe because I had a situation that forced it on me but he really is happy, well cared for and I can actually enjoy being with him!! (Now that I said this, I need to knock on wood and pray he is still that way when I see him today). I do feel bad when I have to leave him but I know it's better for both of us. Divvi, you broke my heart. My dh call my name every morning when he got up. I don't know if he does this where he is and I don't want to know. We play with emotions so much that sometimes things are better left alone. What do they say-ignorance is Bliss. To all of my friends, live in the moment and try to enjoy every day. Know you have done the best when situations change and move on with no regrets. Good Luck
Divvi, reminded me of the day I left for work many years ago, leaving a little 3 yr old standing in the doorway crying. Oh, it just made me sick..He was well cared for. He also had two older sisters to keep him company but I felt terrible. Yes, to consider placing DH is much the same.. BUT truth is that he'd would probably be MUCH happier if he could be the social butterfly somewhere rather than settling for pulling weeds here. MAYBE. IF circumstances require it, there will be no guilt. I think thats the issue.. what circumstances will REQUIRE it. Something else to try to work through.. but indeed we are doing the best we can.
In my humble opinion, no one places a loved one willy nilly.....by the time you get to the point where you can't handle the 24/7 care you have either burned yourself out, you are ill or injured, or the loved one is past the point where in home care is possible. Guilt should never enter the equation. This disease did not come with a play book. We struggle through every day....we take care of giant toddlers who test us at every turn....we work through sleep deprivation....some of us live with physical, verbal and emotional abuse....we do most of this without pay, help or support. Where is it written in any of our marriage vows that we would take care of our spouse until we fell over dead ourselves? It certainly wasn't written in mine.
I had to place my husband for three years when it became apparent that I was either going to kill him or myself. I never felt guilty. I was in survival mode.....I still took care of him at his AD facility....but I could walk away when I wanted. I went home to a peaceful house where I could sleep all night. I could go on many vacations with friends and family....my life didn't have to end because his, for all intents and purposes, did.
When he became bedridden and could no longer fight me at every turn I brought him back home and took care of him. I brought in help to bathe him and to stay when I was gone for longer than a couple of hours. It worked wonderfully for the three more years he lived. So, I have been on both sides of this discussion.
We have enough horrors in our lives living with this disease, we don't need to heap guilt on top of everything else.
I am really having a difficult time now after placing my husband in March. At first, I felt guilty, however, relieved that I wasn't stressed 24/7. Plus, I wasn't being manhandled or fearing for my life constantly. But, now almost 7 months later, I feel like someone kicks me in the stomach every time I leave him. I can only sleep on the couch again. I know he is receiving much better care than I could provide, however, I just wish he could come back home. I know in my brain this the best for both of us, however, my heart doesn't feel the same. Will this ever get easier? If I feel so lost now, how will I deal with his death?
Dear Kadee: I don't know much about you, except that you are still young and suffering. I had to go thru the same thing and have no wise words, but, yes, he is probably getting better care where he is. Are you alone too much? Is it possible that you could do some volunteer work? It's a cliche, but true that we do better when we help others and get outside of ourself and our own troubles. You just sound empty, you need something to look forward to, something else to care about. You cared for your DH, now take care of dear Kadee.
Hey Kadee, I have been thinking about you my name formerly was ftd but I changed it to angelb because I am not the one with ftd but my DH. I just wrote your email address down because I wanted to know more about the placement and how you felt. I am young like you and my DH is 60 he is now diagnosed at severely impaired and I am wondering should I do placement and when is it time....looking at your post I am afraid I will feel the same as you do, since my days and nights are filled with caring for him.
For all you folks that are feeling guilty,heres my "story" wife was diagnosed a cpl years ago an I was the 24/7 caregiver,she has four sons,one living a mile away but he informed me that he had a business to run an also had a family to take care of,so much for any help from them,any way two of my daugthers are RN's an they were constantly after me to seek some type of help as they thought I was ruining my own health.Fast forward to Christmas 2009,daughter living in Phoenix couldn't make it home for the holidays so she was sent some pictures from her sister here in town,I found out recently that daughter in Phoenix cried because she didn't recognize me in the pictures,thats how much it had taken out of me,LO has since been placed an I did feel guilty but also realize it was gonna kill us both,while I understandthe feeling of wanting to "take care of spouse" I also know more than ever now that sometimes you just have to do the unthinkable an place them,thats my story an I'm stickin to it
Ol Don (and others), you have nothing to feel guilty about with placement. The important thing is that you work to ensure that your loved one gets the right care. That may or may not be us. You are still the only one that can hold their hand and tell them that you love them. You are still the only one that can make the decisions for their health care.
I felt horrible about having to place my husband and yet after he was placed, I got to be wife again instead of exhausted caregiver. I got to enjoy his company once again. I am very glad that I did get that opportunity to appreciate him once more before he drifted even further into the evil fog of Alzheimers.
I think I waited to long for placement. It was done in a crisis situation and from that moment on he didn't speak a rational word or care where he was. We never got the chance to have a rational conversation again.
Placement, for me, was an absolute necessity. My children and DW's Dr convinced me that I had been taking care of her by myself for longer that I should. However, she has changed from the pacing, raving, (sundowning) person she was at home to a calm and accepting person. So, you say, what's the problem? The way she is now makes me want to bring her home and take care of her again. I know, I know, that I have a screw loose, but, those are my feelings. So, I have to continually remind myself that she can't handle the world that I live in. She absolutely must have the controlled environment that the facility can provide. Meals at the same time every day. Sitting with the same people at the same table. Taking meds at the same time everyday and on and on. The world she lives in is small and controlled and that, along with her meds, is why she is calm. However, she still doesn't know where she is and why.
Dean, I know how you feel. Now that my husband is calmer, I want to bring him home every time I visit. An Aide ask me the other day if I would ever bring him home for a visit...my answer was No, if I ever brought him home, I would never take him back. As I have mentioned in the past, my brain knows he is in the best place, however, my heart doesn't.
I too think my LO is too good for the place she's at an really should be home with me then yesterday I helped her write a thank you card an it was off the wall,she's in her own little world,I always have a hard time leaving as she wants me to take her home,yesterday she asked why couldn't I stay at her "home", when I tried to explain she just said you better leave or you'll be late for work,havn't worked since 1989 so maybe thats where her mind was yesterday
I know now that I was at my wit's end when my husband was placed. I felt guilty that I had not kept him to the end. I felt even more guilty that I was so GLAD that someone else was dealing with his urinating all over corners and the floor and that I had only had a few days of that before it was no longer safe to keep him at home. His situation was so bad that the Emergency RN at the Trauma Hospital would not let me take him home.
And now I am so grateful that he was so bad that it was obvious to anyone who looked at the situation that I could not take him home. I'm not feeling all that much guilt any more, but I am doing something that Kadee, for example, is quite obviously not doing. I'm working on rebuilding my life right now. I'm not waiting for the funeral.
Ol don, you might consider that the "home" your LO wants to go to is not the home you live in. I know that the "home" my husband was trying to get to the day before I sent him to the hospital was not the home he shared with me. Maybe that made it easier to have him stay in the nursing home.
Starling, I am so glad you are working on rebuilding your life, that is great for you. And you are correct it is obvious I am not. You are older and wiser than I. Maybe I still have those rose colored glasses on. HOWEVER, since my husband is not dead, he still is my life.
Your comments are very helpful right now. I know I am looking at placement soon. DH's husband has told me twice now that I should. I have a very limited support system in town. Really just day care and one family member. I work more than full time because I have to. I need the insurance.
Exhaustion and fecal incontinence have become a daily occurance. When he was ill recently I realized I didn't have the the physical strength to lift him up and he doesn't take direction anymore which didn't help. I can't remember the last time I was at the doctor. It's been several years since I've had a true break. I don't know what I'd do if I get sick.
But I keep holding out as he is not combative. Maybe because he is in his own stage 6 world.
I am considering placement in the very near future. My DH often does not know who I am, gets lost in the house, cannot locate anything and cannot be left alone at all. I have no family nearby and moving to be near family is not an option. Our blended family is scattered across the country.So, I am with him in the same room 24/7 unless I pay for someone to stay here while I go out for a few hours. He attended an excellent daycare type program for 8 hours a week, but now fights attending. He is now in an ALF for 11 days while I get respite time. This facility is my first choice for placement and they have one opening for placement at this time. How do I know when is the right time? Whar is best for him? What is best for me? The ALF would keep him until the very end. It is a 10 minute drive from my home and mostly affordable. My own mental health is suffering - double doses of Wellbutrin, Xanax, and weekly therapy sessions are keeping me afloat (sort of). Any thoughts are very welcome. Thanks.
It sounds to me like the time to place your LO is NOW. If he is in an ALF now why not see how he does and if he settles there it could be a sign he will be fine and it could be the best thing for both of you. My DH isn't close to being placed but if he was doing the things your DH is doing and I was on the meds you are I am pretty sure I would be looking for somewhere to place him. I hope everything works out for both of you and you will be able to relax and take care of yourself. Good luck and God Bless
Formersoulmate. good to hear from you friend. i know its been very difficult making the decision for respite time away. for your own well being you need to make that getaway. as you said your mental health is suffering and you can see the results with all the extra medications you are needing. like we have said before if you are asking- is the time right- then its probably time. if hes already in the same ALF and finding acceptance then its a good time to make the permanent transition. you willl still be able to visit being so close and you know the facility has an excellent care unit for him and over time he will adjust. hugs and hoping your respite time gives you the needed rest mentally and physically.
Agree with the others that it's time. If you don't take this opening now, you may have to wait months for another and may end up with one that's not as good.
I waited too long and nearly ended up in the hospital. Think about what would happen to him if you got too sick to care for him. Just my opinion but it sounds like it is past the time. DH has been in an ALF for almost two years and has adjusted well. He no longer knows who I am but he seems to know I am someone familiar to him. When the respite is done, I feel you should arrange for him to stay on. It will be easier on both of you. Big hug.
I, too, did the 24/7 thing because he could not be left alone. Suddenly it hit me that this disease was indeed taking me too. He was placed four days ago and, despite the sadness, I am more relaxed. I know he's safe and will get more care than I am able to give him at my age (almost 80).
former soulmate--I agree with the others who have said you should look into placement now. I am curious about the role your therapist is playing--I would think he/she would be encouraging you in that direction as well, especially because you say your mental health is suffering. Perhaps having this period of respite will help you see things more clearly.
former soulmate: Don't do like I did, ie, to wait longer than you should. My DW's dr intervened with our children and the three of them almost told me that I had to do it. That should have happened at least six months before it did.
SOULMATE. Your description sounds like the time might be now for placement if you are becoming this stressed mentally and physically. I face a situation not dissimilar to yours. My DH is not as far down the road as yours, but I too have very limited support in terms of family and DH's friends seem to drift away..and they never call me to ask if there is something I could use help with such as taking him out for lunch..they do go out "golding' once in awhile but not often...If my DH gets to this phase, because I too have some muscular problems now for which I am taking PT, I may well face this too. I don't hear much in the "pipeline" about in home help or in home agencies in our area. This is so sad..and like Kadee said, he is my life...he is so sweet and generous and even though he sits in the same room watching tv, I miss him.
ttt for me or anybody else. This thread was a good re-read for me.
Here is what I think: Sometimes we confuse our feelings of grief and helplessness with guilt.
I'm having "one of those nights," and sitting here wondering what I could do to have him here (because not-here is such an empty feeling.) Then I have to remind myself: There isn't even anyone I could hire who'd want to spend the day following an agitated, uncooperative, hallucinating person all over town.
He is safer. I can be there whenever I want. The activities tire him out so he spends less time fretting. These are good things. I'm just sad, not guilty.
When this post was originally written I was still in too much pain to respond. It had only been two months since placing Lynn and I was not doing well at all. I felt immense guilt and the worlds worst failure.
In retrospect I can now say I think how we handle the placement of our loved one depends largely on how they themselves transition. If they settle in with no fanfare and seem content, that makes it much easier on us. Still unbelievably difficult!! …
But not the nightmare it is when your loved one does not want to be there and pleads for hours and hours every single day to please, please just come home with you. My heart may never recover from those first few months after placing Lynn. There just are not words to describe the sheer hell it was. I have never in my life felt so helpless and hopeless.
Three years later and I still have some guilt, though I no longer feel a failure. I know I did what was best for Lynn and I did it with love in my heart. I did the very best I could, for as long as I could. I of course wanted Lynn to be safe and to get the 24 around the clock care that he desperately needed, and deserved. It took more courage that I thought I possessed to not only place him, but admit to myself he needed more care than I could provide. It was a blow to my ego in truth, because I was so convinced I not only could do it, but should do it.
Now I know better. Now I know it is the kindest thing I could have done for him. Yes the transition was the thing nightmare are made of, but he did eventually transition well. Better than I ever dare hope. In placing him, I was given the most amazing gift.. Lynn went from seemingly hating me at home, to once again loving me. He wanted me there with him, I was no longer his nurse, his maid, his cook, his mother, his “mean” caregiver, I was simply his wife and best friend again. I know if I had kept him home, the aggression, the rages and the anger - all aimed at me, would have continued. To feel his love again, wow!! Three years later and it still has the power to move me to grateful tears.
So though it was so very hard, it was also amazing….He has a whole staff to look after his needs. I can (and do )visit him daily, often more than once a day. Our visits are just wonderful! There is no stress, only quality time spent with the man I still love so deeply. Every day we go to some kind of entertainment, he gets daily PT and has productive stimulation. As much as I loved him, these are things I could not do for him at home. Who has the energy or strength to entertain them, to make their happiness your whole focus when you a elbow deep in poop? I know I certainly didn’t!! And now, I do.. And for that I am very grateful!
"You are making decisions which are in his best interest and not perhaps yours, that is called love."
No greater truth Bob!
Emily, do you have anyone you could go out with? Even just to a movie, or for a walk, just company..... I retreated into myself and didn't "transtion" well at all. I let that sadness consume me...... don't let that happen to you♥ As much as you love Jeff and want what is best for him, he too loves you and wants what is best for YOU!! Only took me a year and a deep depression to figure that out for myself *wink*
emily--I'm only a few weeks ahead of you in the Placement experience.The hardest part for mehasbeen all the upheaval we went through beause the planned Placement was delayed and then we had a crisis and Police took DH to thehospital. That was followdby 2 weeks of prob;lems and transfers before hefinally ended up Placed(where I was hoping for, TG.
I refuse to feel guilty about Placing him. (See my Thread 'guilt') I am sad. There is ahuge holein my life. He calls a couple times a day. He often says he's waiting for the Dr.so she can release him. I always say, "We have to do what the Dr. says." He is now being treated for Congestive Heart Failure as well as VaD.
He won't be coming home. Our house is in a Short Sale and I've moved into a 1 bedroom accessible apartment. There is no more "home".
I am his Caregiver. I have been for 24years. That has not changed--just how I have to do it. I have always and will always do the best I can for him, but I am guilty of nothing. I did not cause it; did not abandon him. This change is horrendously hard, but I will get through it. I'll be seeing him tomorrow.