Stop putting yourself down. I think you're great. (tide won I see)
everyone,
I have some news. I'm in the middle of placing my wife into a home on a crisis basis. She's become too aggitated lately and when she went to the respite center last it became such an issue with her interaction with others there that they talked to me and let me know that this has to be solved or no nursing home will take her. I came apart because that's the worst nightmare and they've kept her and have pulled in my specialist and case manager to find a solution which is some rispiridone (?) and another med which has calmed her somewhat but it has been during this trying week that I caved in and admitted I'm out of gas and said the word crisis.
I've had everybody around me including this week making sure I understand I've gone further than almost everybody does. The whole staff had me crying they took such pains to tell me what I've done and yet I feel like I'm abandoning her. She does know me and she does have moments but even her brothers and sister have been pushing me that somewhere I have to let her go.
I'll never understand. I know she could hardly walk or eat or do anything at all but she's in there and some of you went all the way or have no choice but when I heard the director say they wouldn't let me down and would keep her until they solved this, a voice screamed inside and I cried for help. I have a cataract in my left eye I can hardly see through, I have two teeth missing that have hurt for months, I can't move my left shoulder above my head and should have it looked at and I am so dead tired. With every phone call and every visit the news is different but we're getting somewhere in calming her down and my poor little redhead who never hurt a fly isn't coming back because they've all promised they'll figure it out and when they do she's going to transfer to a nursing home because I'm putting her there.
It's 1:15 on Friday morning and I just hung up from the fourth call tonight. The word is filtering out and the basketball guys are calling that have been close since university. I'm a rich man in support and I wish everyone had that but I can't feel anything. My body and mind are numb and every thought is a tragedy of memory including the christmas tree that I suppose now has to come down and the things that can remain out and the doors that can be kept unbarred and open and the things staying where they are isn't funny anymore in the house she should be in but which I will not let her return to.
I can promise that I will take all the pain and hide nothing as part of the respect and integrity of this hopeless war and learn the horrors and pain of life fully alongside the angels of humanity helping me through these difficult days because I know this spiritual journey is learning to seperate the value of life from the fantasy of forever in that the value of life and love are not diminished by the loss of them but created by having them.
Someone here said months ago this is the worst day when you put them in and yet I see her in the bed towards the end unable to rise or swallow and will know afterwards where it was the worst. I have transfered the location of her care some say and that's true; but, I have done what I can in her own home and while I'm capable of going some months longer, the truth is I would do it until I drop without admitting that I am destroying us both and when I heard no one might take her I believed for the first time that it was time to make this change so I can keep going usefully to her last breath. And more honestly, because it feels like I'm saving myself.
The director wouldn't answer my question whether I should place her or not; but, when I asked her if I had done enough she burst into tears and said "how can you not know?"
Because I love her you silly duck. So I'm incapable of judging. Nursing home phase, live alone phase, here I come and as always the thought in my mind is "wait until they get a load of me." I've come to accept after a lifetime of reinforcement that I'm unusual. Not good or bad just different.
I accept the responsibility that this week I took a step away. I accept the responsibility that it was me who said this was necessary. I feel the guilt full weight in protecting myself from how much I sacrifice as it should be in the same full weight of respecting truth. And these are the truths. I take responsibility for my actions and while all this is so terribly sad and hard - I can live with this. I said all along it shouldn't take both of us and it's not going to. I am so sorry for her.
Wolf,you have gone more thanthe extra mile as a caregiver, more than I think I can ever go.Please, find some peace within yourself, we are not put on this earth to live forever,you have to let her go to her eternal life, you have done all can do,it's not in your hands now.I shed tears for you as I am sure every member here does.Our thoughts and prayers are with you.
I know this is absolutely devastating for you. ((HUGS)) I hope the doctors get things settled down quickly and that you will be able to clearly see the benefits to her receiving the 24/7 care that no mere mortal such as yourself can provide. I would urge you to reconsider your guilt. Guilt is something our conscious provides us to bring us to awareness of our own wrongdoing. If you are feeling guilt it is totally misplaced. You are doing the right thing. You would never deprive your dear wife of anything she needed, including the 24/7 nursing care which she now needs. Don’t waste time, and more importantly, emotions on beating yourself up. Grieve for the situation, but not for any perceived inability of your own to do the impossible. Your DW is still going to need you, the best of you, to advocate for her on a daily basis. You are both in my prayers. Here is a link to a blog written by a woman who has just moved her husband to an Alzheimer’s living facility; perhaps her experience will help you to know you are not alone: http://movingforwardwithalzheimers.blogspot.com/
Wolf-I know how empty your house will be. For a while it will be a house rather than a home. With your dear wife placed you will have the chance to breathe, think more clearly and see to your own physical problems. The time you spend with your wife will be filled with love rather than desperation.
Wolf, I can only imagine how difficult and painful placement is. I know how hard it was to take Gord for evaluation in the hospital last year and how hard it was to put him in respite. With the benefit of hindsight, I am wondering yet again if I was wrong last year. The psychogeriatrician at the rehab hospital told me that Gord should not be coming home. He should be placed. He said that if he was placed, I could return to being his wife instead of being his caregiver. This last year was so hard and now that Gord is gone forever, I find myself wondering if the doctor was right. This past year more than any before, I was no longer a wife. Did he miss that? I can see that you have been a wonderful caregiver but now you can return to just being a husband and a fierce advocate for this woman you love.
Wolf: I could have written your words verbatim 23 months ago. I, too, took care of my DW longer that I should have. Looking back now, it was killing me (and her too) and I didn't know it.
I was fortunate in that her Dr and our children (with help from her sister) kinda just took over and did everything for me. Daughter picked out the NH and Dr's said that I had no other choice so I just drove her there. She had been in the hospital for two weeks and I think that made it a little bit easier. I would not want to take her from our home to the NH.
I miss her terribly and I am lonesome without her. More often than not, she cries when I leave from a visit and begs to go with me. She doesn't remember our home, just wants to go and be with me. She tells me how much she loves me several times each visit even tho she didn't even like me the last several months that I took care of her.
It is still hard to leave from a visit so I usually say to myself as I go out the door 'Momma, I have gone with you as far as I can' and then push back the tears. It is hard to go on without her.
Wolf. When I talk to any people that do love me, I tell them about this support site and all the amazing men and women on here. You always come to my mind when I say that, I remember all your giving and pulling and cleaning and crying and Christmas trees and all you have done for you little redhead.
I am so sorry for you pain, you will be in my thoughts and prayers. Please take care of yourself, get those sore teeth fixed.
Wolf--last summer, my situation was similar to yours and I requested that my hb return to the geriatric psych unit for med adjustment. The neuro had been gently pushing me to pick a facility for respite/placement for a while, but I didn't want to hear it. The second geripsych stay convinced me that AD had progressed to the point where he needs 24/7 medical supervision and med adjustments can't be done in such a complicated case in the home.
I have been told over and over that I kept my DH in the home about 2 years longer than "average". He adjusted very well and because of that, I have no guilt nor do I question that I did the right thing. I, too, wanted to keep him at home until he passed, but I realized that all AD patients are not equal. My husband is on multiple brain meds, he is a challenging case, and it is better to let the professionals observe him on a daily basis. Do not let the fact that some caregivers are able to keep their LO's at home for the duration cause you to have guilt about placement. I repeat, all AD patients are not equal, each one is unique and their care needs are unique. Off the soapbox now!
Wolf - you need to get your eyes and teeth taken care of. You need to see about getting your shoulder fixed or back into shape. It is you being healthy that you can now be the most help and support for you wife.
My mother-in-law refused help. My FIL was not as far along as your wife, but she still needed help and respite but refused. She died suddenly one day of a heart attack. My FIL went into the VA Alzheimer unit because we did not realize until her death the hours she was awake cause he was a runner - nothing could keep him in. My FIL spent the next 9 years in the facility until he finally died. In that time we made the 3000 miles back there twice, my SIL was not there to visit because she was in the early stages of AD. My BIL was the only one there and his visits were limited to the monthly staff meeting. I do not believe he visited other than that even though he was a half hour drive away.
When I was reading your medical problems I thought of my MIL. Your dear wife is where she can now have someone caring for her 24 hours a day. Now it is your privilege to get healthy and make sure she gets the care without the physical stress on your that could take you before her. If you do not take care of yourself she could end up like my FIL with no one to visit regularly that cares and no one to advocate for her. Maybe your biggest responsibility on this AD journey is now -not in the past.
Wolf - take care of yourself now. There is no guilt to bear - you have been the best for her and will continue to be until the day she passes. It is now your job to make sure you are around to be there for her.
(((wolf )))i hope the transition into placement goes smoothly for her and you. like the others say its time to get wolf healthy so he can oversee her care. they say it gets easier as time passes, hoping this is true for you as well.
Wolf, you have made me laugh at times and other times you have made me think but today you made me cry. I know that the time is near that I will have to take my DH to a nursing home and it will be very hard. Remember that we do the best we can and that has to be good enough. Love you.....
In my long nursing career I worked in SNFs from time to time. I must confess I never thought much about the families and about how painful it was for them to watch a loved one fail. I thought many were taking the easy way out. At that time it was old parents or relatives who resided. Never in my wildest dreams could I ever imagine what it would be like to place a spouse.When I was in tears placing my husband the owner of the facility was clueless about how I felt. Family-we have a lot of educating to do.
Wolf....What can I say....I cried when I read your post, tears are still running down my cheeks. There is someone greater then you and others that will carry you in this time until you get your footing again. You will know when time passes that you did everything and more for your darling wife. What a wonderful husband you are and will continue to be until she is called home. For now, you must continue to take care of yourself so you can still be there for her.......Take care...Hugs.
Wolf, my heart hurts for you. I won’t tell you not to feel guilty (even though you shouldn’t!) I am the queen of guilt. I feel guilty about lots of things. I know I shouldn’t, but the fact is, I DO. I tell myself I shouldn’t, but I STILL DO! I don’t think guilt is an emotion, I think it’s just something in your head that you just can’t get rid of, no matter how much you try. So NOW I am going to tell you “don’t feel guilty”! You did everything humanly possible to keep your dear wife home as long as possible. Now it’s time to let go. You’ll still be her caregiver, just in a different way. (((HUGS))
Wolf, We all admire you for your courage and strength and yes, sense of humor too. You have done a wonderful thing in the way you have cared for "Your Little Redhead" and you know what"? She knows it too..and she would want you to take care of your teeth and your shoulder, get some rest and revive yourself..Remember she is as generous and caring woman as you are a man. I hope it will help lessen the guilt you do not deserve to feel as you face the next several days and weeks as you adjust to this. And keep in mind too, that when you do visit with your "Lovely Little Redhead" that finally some of the very hard work will be shouldered by others leaving you time to enjoy your sweetie and she you in whatever ways you can..Please be at peace and you and your LO will be added to our prayer chain at church today. Arms Around, Mimi
Wolf, you express your feelings so well that we can actually feel your pain. Mary, I love your post. Yes, our caregiving will not go on forever and in stage 6/7 they really can't help doing the things they do. I would love for all of you who have lost your loved ones to tell the rest of us what you would do differently if you had it to do over. I think that would help us who are struggling to know the right thing to do in so many instances.
I would do as Joang has suggested in a recent blog and move sooner, rather than later, to get help. Actually, I did do that and was stuck in the same place as Carosi is right now. I think we all do everything we can; we use our best judgement, and still we're the ones who get shafted. It's been said that in every organization, there is someone who cares. If you can find that person, it helps. Why isn't Carosi's doctor going to bat for her? I noticed when I was working as a nurse that the doctor's families, one way or another, were taken care of. Or is Alzheimer's such an terrible disease that we can't win for trying?
Dazed, I would have placed Gord sooner instead of insisting I must bring him home from rehab. I then would have returned to being a wife instead of a caregiver. I wish that I had been more wifely and less caregiver. This is one of many things that haunt me. I wish I had been more patient. Unfortunately, almost all of his behaviours were his old behaviours only worse. When it is something you have dealt with all your married life and then it gets worse, it is hard to deal with...at least, it was for me. I wish I had known that his life could end so suddenly. I was sure that as he was only 67 and in pretty good health that I had years left. I wish, I wish. That is my endless mantra now.
Dazed...that is a great idea "What I would have done Differently". That needs to be a thread by itself so we all will see it and can ask questions to those that have had the "total" experience. Maybe one of the people with the stars will start a new thread.
jang: You write: "Unfortunately, almost all of his behaviours were his old behaviours only worse. When it is something you have dealt with all your married life and then it gets worse, it is hard to deal with...at least, it was for me." Me too. My husband is currently 66. I will try to learn from your experience.
Wolf....I am sharing your pain...My only dumb advice is to follow your heart. I travelled the road you are on, and I was so blessed to have my kids helping. I would not have survived alone. Your heart will break, and I have to say that the disease will continue to inflict its damage despite anything you do or not do. Just keep loving the little redhead, perhaps now more than ever, and you will not go wrong.
Wolf Only a few months ago I was in the same place you are now My wife was failing getting weaker every day and I was exhausted. I had just had to deal with a prostate infection and a catheter for two weeks and I had fallen and had to have stitches in my head while she continued her downward trend. I talked to our Dr. about placement in a nursing home and he agreed that it would probably be best so I contacted them. When the lady told me that because we had no long term care insurance and would have to apply for state medicaid and I looked over the application I said no if I had to go through that bs then she would never see the inside of that nursing home. It was very hard to care for her those last weeks but now she if gone and I did survive. My life has changed radically since her passing and I am starting down a new path with God as my guide. I pray that you too will get yourself repaired so that in the future (and believe it or not you will have a future) when God brings His reward for services rendered you will be ready to accept His offering and move forward. I did not say it would be easy and nobody will come out of this journey without the scars of life on them but believe me when I say that Gods plan for your life will be worth the trip. May God bless and reward you generously for your service. Hang tough. Bruce