I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I am sure I am not the only spouse who has felt opposing emotions as I describe in the blog. How did you get handle them? Please post comments here. Thank you.
Joan, so sorry you are having such a nightmare with Medicaid. Seems to be one of the worst abuses members here have encountered. Is there an advocate, attorney or similar that could help you fight them to get placement sooner rather than later as they apparently want? It is like they are not even listening to the doctor.
I wonder if it is just the case manager you have, Florida Medicaid or changes that are coming due to the Affordable Care Act. I truly hope it is not the later cause that mean for all of us we could be faces the same nightmare.
Sure pray something positive happens soon - real soon like today or tomorrow.
When you can no longer maintain your own health while providing just about total care for your loved one it is time to place. There is no point in letting this damned disease claim both of you. Yes-there will always be guilt, the what ifs and the should haves, the what shouldn't haves. It is no betrayal to admit you are on your last thread of sanity. Joan-I hope things go quickly for you.
CNN just ran a series (and sorry to say I just read the headlines and first paragraphs) about the corruption and fraud in Medicaid clinics. How sad for us as a country that a system meant to help people like you and Sid has been bankrupt by thievery and grift. Medicaid is punishing the people it was designed by help with layers of bureaucratic red tape that do little to stop the crimes. If only life were like a B Western, we might have a chance. Thank you for writing about your ambivalent feelings. We can all identify and sympathize with those.
As to the ambivalent feelings - I would like to hear from others who have placed their spouses as to how they resolved the feelings I wrote about in the blog. Does the heartbreak and guilt ever resolve itself?
As much as I know he has to go for both of our sakes, the thought of leaving him there is making me want to throw up.
Joan, I am certain this is harder for you than it was for me, as you have been with Sid for so long. Also, I am able to fall back on the guilt a bit as Dado was taken to the hospital. (and yes, it was a bit of a ploy as I was breaking down)
Having said that, if you recall my posts it almost killed me, those two months of that mess and me being sick. Then, when we did get him placed, the first few weeks he YELLED and SCREAMED when I left, yes imagine how hard that is. It is no wonder there was NO ONE but the people here who could tolerate my grief and madness.
Now, not only am I resigned, (6 months in), I am so very glad he is getting the care I could not give him anymore. He does not yell, has not for months. When I see him , I often lay my head on his lap as he zones out in his wheelchair and cry softly, telling him that I am still there for him, always, and that everything will be allright.
Now, the hard part is ME, the low grade sadness that always lingers, then rears up in sobs and loss. I KNOW I have done the right thing, but it still hurts like hell. I do Joan, have a feeling of self respect and a love for myself that I never knew was there, as I did the best I could and continue to do so.
What is hard now is a sense of loss of direction, what to do, and a big fear of the possible end of life scenario Dado will likely face. I am scared how I will be able to handle his suffering.
But I do get lots of rest, I even manage to visit a girlfriend now and then and not talk about dementia. I remind myself over and over that "this is life" , and how will I be able to glean some good out of it and even possibly have some happiness again.
It is going to be so hard Joan, and what I hope for you is a shoulder to be there for you, I would have loved that. I know others will come along here that their experience may be more of what you want to hear about, as they also have such long time marriages. But oh how I love Dado, 13 years of being with the kindest human being I have ever known, after many failed and awful attempts. I miss him deeply. I still, get thoughts that he is going to get well and come home. No, he is not.
Joan, I placed my DH of 47 years in March 2011. I also was physically and emotionally on the brink. I was so relieved initially that I did not think about all the tomorrows. My emotional stress level is about 80% better than it was before placement. My worst time is after I visit him. But my wishes for you are peace and a smooth transition. Getting use to living alone will be a gradual process but, as I did, hopefully you will have some rejuvenated emotional and physicall strength.
You have worked so very hard to take care of your Sid and to make his life as good and as easy for him as possible. Now it's time to take care of Joan, and tend to her well-being.
The first time I took my husband to respite, I cried all the way home, and for most of that afternoon. I kept feeling like I was the one doing this terrible thing to him—putting him in a nursing home, even if it was just for a short time. Gradually I was able to see that it wasn't me doing it to him—it was the disease. (It's strange how we can give our loved ones the benefit of saying, "it's not them, it's the disease", but when we are forced to make changes, we feel like it's our fault, and not the disease doing it.)
Many people have said that placing someone was as difficult as when they died, if not worse. When they die is out of our hands, but having to decide on the time of placement is something Solomon would have had trouble with. The decision is so heart-wrenching that we put our own health and sanity at risk to avoid having to make it.
Please believe that one reason this is hitting you so hard is that you are already at or past your physical and mental breaking point. It's not like you have had a carefree life right up until this moment. You have been dealing with things that would bring anyone to their knees—and not just for a couple of days, but for months and years. Also, your love for your husband has been so very visible in what you write. This is another serious loss of part of the husband you loved, and the relationship you had.
I hope this transition goes smoothly for you and for your husband. And if you ever have any doubts that you did the right thing, please go back and read your own words of what you have been through over the last few years. You have the right to survive this disease. If you could back up your life about 15 years and discuss this with the man you knew and loved, you know he would tell you that he wants you to live and to have some peace and happiness in your life. We all want that for you, too. You deserve it.
(Is it possible that your doctor could give you something to help you make it through this time? When DH was first diagnosed, I lost ten pounds in two weeks, and cried almost that whole time. Without xanax, I wouldn't have survived to be a caregiver for this long. Please forgive me if this offends, but sometimes we need extra help, just for a while. It doesn't help with the heartache, but it helps you rest so you can deal with it better.)
Dearest Joan, how my heart aches for you. Yes Joan I understand.....it is all the harder when you have had such a beautiful marriage like you and Sid. When you still very much love your spouse the confliction of emotions seems more than one can bear. I remember the battle that raged within well....
Joan, you know how devastating this was for me....and when I couldn't come here to post I wrote you personally and spilled my guts. Between your blog and Coco and Jan K's replies I found myself crying, such pain... but caused because of a great love for our spouses. It wouldn't hurt so deeply if we didn't love so greatly. I am not sure that brings you any comfort right now Joan, but in time it will.
I am not sure how I can help you with the battle you are facing Joan, even though I have lived through it. The trouble is that our hearts are not logical at all. We know what has to be done and why, but still we rage against it. I agree with Jan, I am one who felt placement was like a death... because in many ways it was the end of all I knew and loved.
I think it is also more difficult for those of us who want to care for our spouses at home but simply are physically unable to. My plan from day one was to keep Lynn at home until God called him Home. I wanted nothing more than to be able to bring him comfort and give him some happiness. I did not foresee how the strain of caring for him could and would put my health in danger. Even when my doctor told me the next TIA could kill me, still I wanted to keep him home. I knew I couldn't, but that did nothing to diminish my wanting to.
How did I resolve the battle of conflicting emotions? I didn't Joan. One day at a time is how I handled it. I held tight to the knowledge that I was doing this with love in my heart and I was doing it as much for Lynn as I was for me. He deserved to get the best care possible, he deserved to have activities and stimulation and he needed more care than one person could provide. I still repeat to myself daily that I must love Lynn enough to do what is best for him.
I had great guilt at first, but that did diminish. When they have adjusted and you see them having more quality to their lives it helps. What helped me the most was that by not having the daily 24/7 care, when I visit with Lynn he gets the absolute best of me. The time I spend with him is all about making him as happy as I possibly can. I am still his caregiver and fierce advocate, but more important is I am able to be his loving wife again. That is such a gift!
I can truthfully say I have zero guilt now. I did the very best I could in this impossible situation. I know how very much Lynn has always loved me and I know he would have wanted me to do just as I did. I have great peace now. He is still the love of my life. To see him smile still lights my world. I do anything and everything I can possibly think of to keep him engaged and happy. I fight ferociously to make sure he is getting the absolute best care possible. I spend quality time with him every single day... No, I feel no guilt at all.
It will always hurt Joan, no matter where he resides. The major difference is that you will have a whole staff working for you to see that Sid gets the care you want him to have... and that you will be rested and able to enjoy your time with him as his wife once again. I pray the love comes flooding back for you as it did for us.
One thing that did help me is that I never thought of this as having to be permanent. I held onto the fact that if it didn't work out I could always bring him back home. It wasn't denial, more like a crutch I held onto in desperate times.
Thinking of you Joan and praying you can find some peace for your troubled thoughts and comfort in your heart. Much love ((hugs))
Hi Joan. I know what u r going thru as I am in the process of placing my husband. I started the whole placement process almost a year ago and waited 7 months for a Medicaid bed. I was going to place him at a cheaper place but after leaving him there on vacation my kids did it feel it was the best place for him. My marriage was not the best but I still have a lot of guilt. The lady told me yesterday that it takes 30 to 45 days to adjust so I am preparing myself for a rocky month or so.
Hi, Joan. My husband was taken to rehab because of a fall, and I ultimately left him there, for similar reasons that you have outlined. I often think that was a blessing, as I didn't have to make a conscious decision, as you are, to actually do it. But you must. I have been battling numerous conflicting feelings since the day he entered. Initially, it was that horrible feeling of leaving him there (57 years old), in the midst of so many elderly that seemed to be in better condition than he was. It really was traumatic for me! Then there was guilt over getting back to my life, and the new normal. I still grieve over all that he has lost, but I have time to breathe in the midst of it! Over the months, I have begun to stagger my visits from every day, to every other day to 3 times a week--he has stopped recognizing me I think (he speaks gibberish). Any way, I have come to understand that it NEVER feels good, but it can feel right. I am more rested, get out with my friends more, shop for clothes--the little things etc. And I can work everyday, without feeling so oppressed by my life. The biggest blessing of the whole thing, is that I can just visit with him and enjoy, rather than focus on everything I have to do to care for his basic needs. He is well taken care of and the nurses and cnas all know me and I interact often. I have been praying and thinking of you often...we all are walking through this with you, together in spirit. And fyi--the Medicaid stuff is such a pain, it's hard to articulate how hard it is in the midst of everything we are going through.
rare but one of the very few topics I have nothing to say or offer. I have not experienced the placement and it was probably why I chose to keep my DH at home. the pain of leaving him behind and walking out the door leaving him to be cared for by others was too painful and overwhelming to contemplate. I understand having 24 hr professionals to care for them is such a relief. but in my mind there is nobody who can care for him like the person who loves them. so yes there is so much heartache in making this decision but in time like the others have attested, you will come to value your decision and know it was done for the good of you both. doesn't make it any easier but necessary. I hope the transition goes well for you both.
Oh Joan, I so know the torture you are going through. Your DH must be placed for his best care and your salvation. That's what your head says. Your heart aches at the thought of not having the man you so love with you. I wish I knew what it will take to ever end this heartbreak. It's even with me since my DH's passing. Much love and hugs to you.
Joan, I've only known my husband for 22 years, all of which were richly filled with love and fun. We had a deep bond, but we were very independent people. Although we cherished and fully supported each other, one did not take care of the other.
I never intended to keep him home for this entire journey, because I knew that I would not be able to provide all that he needed. I finally made the decision to place him when he did not care where he was and was constantly agitated. Home gave him no comfort, nor did I.
I did not feel guilty for placing him. It was so obvious to me that he needed more than what i could provide and he thrives under the care he receives at the ALF where he now lives. He has needed no agitation meds since he has been placed, except for a couple of days around a trip to the Dentist. Of course, he does say he wants to leave with me, but he simply cannot function in the outside world. Just going out the door makes him anxious. The staff works hard to provide him with activities that are fun and give him a purpose for as long as he can participate. He is calm and content. I am there most days and Nikki is correct. He is now glad to see me and I get to just love him, not handle all of the rest. It is a blessing and I am at peace with my decision.
I have, however, felt deep loss and regret. I regret that this disease has robbed the world of such a wonderful man, that our time together was so short, that our connection is gone, that he has forgotten our story, that he does not want me to touch him anymore. But I understand that is the disease, not anything that I could have changed or kept at bay. My heartache is more pronounced now that I have time to remember our life together. I have days that I feel like I almost cannot breathe for the pain of our loss, but once I get to the ALF, I am more at peace. Then there are days when I want to get back into the 'real world' but i feel like I would be leaving him behind. That is where I feel the most guilt. So for now I focus on him and try to be very gentle on myself. The mantra 'one day at a time' fits here too.
The emotional pain of having him not living with me is so terrible, but I lean on the thought that this is best for him and that gives me peace. It is just one more heartache that we bear for them.
Joan, there is no easy way to deal with this nightmare. I think what Nikki said about telling yourself you can always bring Sid back home is a good suggestion. It will keep that possibility floating out there, and maybe lessen your anxiety. Logically, what other options do you have at this time? If you physically can no longer do all that is necessary for Sid's care, and can't afford to pay for 24/7 homecare, then what is there. Emotionally, I don't see a way around you feeling sick all over, and hating that it is up to you to make these decisions. Joan, my heart aches for you and Sid. I hope that you soon get over the Medicaid hurdle, and find a comfortable SECOND home for Sid (and you). You are not deserting him, but continuing to do what is ultimately best for you both. Good luck!
Hi Joan, I read your blog. I placed my husband 2 weeks ago, and thought I was dealing with it, but today I lost it again. You asked for techniques that helped. I wrote a statement of affirmation: “ I refuse to feel guilty for putting you in a nursing home. I have been a good and loyal wife to you. I am exhausted and need to re-charge my batteries. You are in the best place for your safety and for my mental and physical health. If I were the one with Alzheimer’s, I would not want you to drive yourself into the ground taking care of me. Put me in a nursing home. If you had your full faculties, you would not want me to do this to myself. I love you, but I have given all I’ve got for the moment. We are all going to die sooner or later. This is all out of my hands, and we have to put our faith in the Almighty. I must learn to give it all over to God and to trust in his plan. Please forgive me if you cannot understand this. We have had 17 years together, and have had some wonderful experiences. I thank God for your entering my life, and for the wonderful life we shared. I love you with all my heart.”
I also put a rubber band around my wrist, and will ping it whenever I feel guilty. This has worked for the past week. Today, some other issues came up not related to my husband, and I felt overwhelmed and sad. I did not feel guilt, however, for putting him into the home. I hope this might work for you. We are all on a journey, and the future is daunting. Take one day at a time. Tina
Oh Joan, it is such a hard hard thing and my heart breaks for you. You mentioned the quiet in the night. Take mental snapshots of those moments - you will draw on them later and be glad that you filed them in your mind. I think back of my DH and I mentally memorized everything about him as I knew he would not be here forever and it is so comforting to think of those things now. I am thinking of you and sending you big hugs.
We had an emotional roller coaster ride earlier this week when the ALF director called to say a room would be available in 5 days and did we want it. I said yes ... but then she called back 5 hours later to say she had made a mistake and that room would not be available. During those 5 hours, however, I had told Clare the room was ready and that she'd be moving there in 5 days. As recently as last month that would have led to an angry discussion, but, much to my surprise, Clare was okay with going to the ALF. She is so fully aware of how quickly and more severely she is declining now and how those morning and evening routines are increasingly difficult. We shared many tears and tissues, but also the recognition that it was time for this to happen. When the placement day really does arrive, it will be very difficult and emotional because I will also think about missing those wonderful afternoons watching TV, holding hands and cuddling, rather than thinking about how I will no longer have to deal with our difficult mornings and evenings. But I will not feel guilty because I know it's the right thing to do and, quite frankly, would hope that if our situations were reversed that Clare would be placing me at this time. I intend to visit Clare at the ALF each and every afternoon for as long as she knows who I am ... it's only 3 miles from our house ... so maybe that is removing any would-be guilt feelings. And I am looking forward to those visits because there will be nothing to argue about ... all the things causing arguments now about ADLs will be for them to deal with, not me, so our visiting time can be totally positive. Hang in there, Joan.
As always, it's comforting to know that I am not the only one who feels these conflicting emotions. It may all be for nothing, as I am still fighting Medicaid. They continually deny nursing home placement, as apparently their criteria is if the patient is still breathing, he is appropriate for Assisted Living ( <sarcasm>), which they do not pay for.
I did not, and will not tell Sid until or unless the papers are approved and signed. Then I will tell him that he is going in for "rehab". I don't have the strength to deal with the anger, hysteria, and hurt that he will display. I will give him no more than a day or two notice.
It isn't fair. I make rounds in several SNFs and see patients ambulating without assistance, strolling out the front door to enjoy the breeze and chatting appropriately. No where as needing of care as Sid.
If they had any brains they would know most AL do not take people needing medical care, at least that is what I thought others have said here - so they won't take him. It just irks me that someone who definitely needs the extra care, more than Joan can give at home by herself, is given such the run around.
I have been married fifty four years and my husband has been in a care facility for almost a year now. I think we all go through much the same emotional pain Joan, there are going to be difficult times ahead for both of you, but as you get stronger physically and are more rested things will fall into perspective. I don't think we ever get over it, this is not easy but it is reality,we no longer have the have the options available to us we had in the early stages. Trust yourself Joan may God Bless you both.
Hi everyone. I posted in the Book Recommendation sticky about a new book I have found so helpful and wanted to share. Please delete this Joan if inappropriate for me to have it here.
I so share your pain Joan and again thank all of you for your wonderful contributions.
The book gives me hope that I will eventually be able to navigate the life altering transition of my husband going into care, in a was that lets me remain alive and perhaps get some strength back. I highly recommend the book for additional insight into our processes.