I have not written any blogs, nor have I been on the message boards much this past week. My apologies to our new members for not giving you my proper welcome. I have been overwhelmed with stress, anxiety, and sadness as I prepare to place Sid in a Nursing Home. I am not eating ( good for the diet) or sleeping. Nor am I thinking straight. After he is moved, I will write a blog about the experience. Many blogs, actually, as there are layers of conflicting emotions. And then there's the Medicaid mess. I have quite a bit to say about that.
Joan, you have been in my thoughts so often this week ((hugs)) Please check your email when you get some time..... You are deep in my thoughts, heart and prayers (((((((((more hugs))))))))))
It is a hard time for you,Joan,we are all thinking of you and hope things go more smoothly than you expect.I was lucky,Sonny went from the hospital and I didn't have the anguish you and other had.It will be okay.
My thoughts are with you and Sid. I know that this has to be terribly difficult and then to have to deal with the red tape of government bureau"crazy"....well, it just shouldn't be.
I know this has to be a horrible experience for you. I have been thinking about you and hoping things with Medicaid were progressing in your favor. Keep a good thought about the whole transition. Hopefully, Sid will make it easier for you by accepting his new surroundings without too much resistance. Try to get some rest.
In the hope that it can help here are some diagnosis I pulled from Medicaid charts-24hr supervision, O2 precautions, weight loss, bowl/bladder limitations. endurance and ambulation limitations, dyspnea, transfer limitations and of course need for skilled care.
Joan, I too add my support and prayers as you endure and are forced to undergo such a horrible experience while in the throes of the emotional turmoil of placing Sid. HUGS.
Oh Joan, my heart goes out to you as you go through this heart wrenching experience. It's hard enough having to place the love of your life without all the hassels you've had with Medicaid. I'll be praying for some relief for you.
Couple more days. We will tell him that the doctor said he needs to go to "rehab" for his knees. Not telling him until the night before. I have never been so sick to my stomach as I am now.
Be strong, Joan. You're doing this FOR Sid .... not TO Sid. If he had a heart attack, you'd know he was better off in a hospital... the saddest thing about Alzheimer's is that many people do not think they are sick! Sid is sick with multiple ailments and I know you know you're doing the best thing you ever could do for the love of your life. Don't feel 'sick to your stomach'... you're providing Sid with better medical care... just what he would do for you.
I am so glad I had an opportunity to meet you in person a few years ago in Miami..... For the rest of you who have not, you may not realize that Joan is NOT EVEN five feet tall. She is a little tiny short woman. (4'10" I think she said). There is absolutely NO WAY she can continue taking care of Sid who is, on the contrary, not a small man. I have been so worried about you, Joan.
I'm often reminded of the day I sadly told my hairdresser that my DH had begun Hospice Care. She couldn't believe it!!! She asked me, "Why on earth would Hospice accept someone just because they cannot remember things??"
That was the LAST time I ever saw her. If I didn't have chemicals on my hair, I would have walked out right that minute.
I'll always remember something Jerry Lewis said during one of his Muscular Dystrophy Telethons. It is so true. He said,
"For those who understand, no explanation is necessary............For those who do not, no explanation will suffice".
Joan, Just wanted to let you know I am one more person who is hoping, praying, wishing I could help you. I will tell you that the day I left my hb at the AFC home, when I drove away it was like a heavy weight being lifted off my back but it was so very hard. It has been 4 1/2 mo. now and I still have no sense of normal. I do sleep better and have had people tell me I look so much better than before, whatever that means. My hb is losing so much ground lately and is so hard to go see him as the change seems so quick now. I only go twice a week as it is 50 miles round trip and with gas prices it is a lot. Hb still knows me but calls everyone at the home by my name so I am not too sure that he really knows when I am there and when I'm not. It really is easier to just be the wife and advocate and let others do the care giving. I hope that you soon can get Sid in placement and get some relief from the stress. Hard work never killed anyone but STRESS will. (I hope this doesn't sound stupid.) Love, Dorie
oh Joan, I remember that sick feeling so well. I thought it might swallow me whole. The rehab is an excellent fiblet, I hope it goes super smooth for you both. Know that you are loved ♥
Joan you are in my thoughts as well, and though I never needed to place George,I knew the possibility was always there. It must be one of the most difficult decisions we face as Alzheimer spouses, and I know the decision was not made hastily on your part... Please know that you are doing what is best for Sid and yourself. You need to do this...it is the continuation of your role as his loving caregiver and advocate. And keep us up to date on how you are both doing. Love, Kathy
Joan, You know you are doing the right thing for both of you and once placed, it is so true that the love and affection really do come back and you get to put all of your energy into being his wife again. The rehab story will, most likely keep him from being upset with you about staying there and if so, you can blame it all on the Dr. I told every staff person i saw what story i'd told my DH, so that they would repeat that same message to him, if necessary.
My DH's behaviors really stabilized and his anxiety went down immediately upon placement. The only reason I had a sick stomach that last week was I didn't know if he'd buy my story that "we live here now". Still not sure what he believes, but I don't ask and every time I leave him I simply tell him I have to go back to work. He understands that phrase and does not try to leave with me. Good luck. Our prayers and support are with you.
NancyB, thank you for that quote from Jerry Lewis - kind of says it all in a nutshell. Joan, my heart grieves for you. I THINK we're quite a way away from your situation, but I know it will come, unless life intervenes first. You have had quite a love story & I can't even imagine how painful this must be for you - my thoughts & prayers are with you. Lean on the support of the friendships on this blog.
Thank you everyone. I have many friends who are in constant contact with me via phone, text, and email, helping me get through this. But I want you to know that I could not have survived this without your experience, support, and love.
Tomorrow is the day ( Friday), unless something changes. As I was writing his name in his clothes this morning, I thought back to the tall, strong, loving, man I fell in love with so many years ago. I could not stop sobbing. I kept thinking - how did it come to this? I don't know how I imagined it would end, but certainly not like this.
Ditto Vickie's comments. I couldn't have said it better. I will absolutely be thinking of you and Sid over these next few days. I wish peace for both of you.
Sending you my shoulder to cry on. I pray that all goes well tomorrow. And like Nancy B* said "you are doing this for Sid, not to Sid". I will keep you both in my thoughts and prayers. (((Hugs)))
I am in shock over what just happened. I told Sid in a very calm, matter of fact manner that the doctor called and said he needs to be in a wheelchair full time, and needs to go to a "rehab" for " a couple of weeks" for a complete evaluation, so they can figure out what to do to help all of his pain. I said that this horrendous pain can't go on, and he needs help. And he said.................Okay. He said he would do whatever needed to be done to help the pain in his knees and back. And then he asked if there would be a TV in his room.
?????????????????????????????????????????????????????????? I can't believe it. Thank you to my friend, Marci, for giving me the "rehab" suggestion. I'm still waiting for the other shoe to drop, but as of now, he's fine with the "rehab" idea. It does not relieve my sadness, but it goes a long way to relieve my stress.
I will be thinking of tomorrow. I don't think I am very far from placing Ron. We don't have to worry about Medicaid as he will never qualify because he has too many assets. My worry is how many years this could go on and leave me with nothing.
Oh Joan, I am so glad that Sid for now is agreeable. Relieving your stress is very important....your sadness will take a long time (if ever) to come to terms with. One step and one day at a time. Lots of love.
Me too Mary...I will truly be the "impoverished spouse".
Hopefully if there is another shoe to drop it will be a bedroom slipper and fall softly. Every small thing that happens to make you feel less stress is wonderful. I hope tomorrow will be as serene as possible under such difficult circumstances. Perhaps soon you will be able to plop down in your favorite chair , read a good book and know you were a loving caregiver and will now be a loving care manager.
Joan oh how I hope it goes along smoothly tomorrow, and you are both in my heart and prayers. Bless Sid for agreeing, and giving you hope that you can do this.
Sid's acceptance of the "rehab" fiblet has taken so much stress off of me. He is so desperate to find some kind of relief for his pain that he is actually looking forward to going. It wasn't a lie about the evaluations. The doctors and therapy staff will go over him with a fine tooth comb, and hopefully get some help for his knees and stronger pain management.
Tonight, one of my friends called and invited me to come to her house for supper tomorrow night after I leave Sid. She didn't want me to go home alone right away. I decided it was not only a loving gesture, but what I probably need, so I accepted.
I am so lucky to have wonderful, caring friends. I include all of you in that group. Thank you for being here for me.
I've been following what you've been going through, Joan, and I fear it won't be long before I go through something similar. I, like you, never thought our lives would come to this. But, it is what life has handed us and we do the best we can under very, very difficult circumstances.
I, like all the others here, will be thinking of you tomorrow, praying things will go smoothly with Sid. I know living apart from him will not be easy, to say the least.
((Joan)) thinking of you and praying the rehab fiblet works like a charm. The sooner he adjusts the easier it will be for you. I am really glad you will be going to a friend's house this evening. Call if you need anything ((hugs))
Joan, I'll mention a few hints that helped me bear to come into an empty house "after". I began leaving the TV on or a radio on so the house would not be stone silent. I actually preferred keeping my bedroom TV on all night long. I heard several other women say they did the same thing and a few said they still do. I also kept a lamp on in the living room. Light was 'life', and I wanted the house to feel alive 24/7. I'll admit I still insist a light be left on overnight, but gradually I got used to turning the tv and/or radio off.
I'm sure many others on our website will add to this list. If you are one who prefers silence, this may not be necessary, but it was the silence that bothered me the most.
Joan, I am just now reading the last bunch of posts here. It is Friday evening. I can only imagine how you felt today and just the imagining makes me ill. I remember how sick I felt when I was taking Gord to rehab and when he went for respite. I hope you are doing OK.
I did the best I could to keep it together for him. But when I had to go home, and I looked at him, all alone in his room, my heart broke into a million little pieces. I wasn't leaving the Alzheimer person who has given me grief, stress, anxiety, and heartache for the last 6 years. I was leaving my Sid, the man I have loved almost my whole life. Being alone in the house doesn't bother me that much. Thinking of him alone in that room in the NH is making me sick.
I'm supposed to feel relief that my "hands on" caregiving is done. And I guess I do, considering my back hurts so much, I can barely walk, but to live without him................with him in that room....................the only thing keeping me going is the knowledge that I'm not the first to go through this; I won't be the last; and somehow many of you have gotten through it, so I suppose I will.
Thank you for all of your support. It is desperately needed.
One of the first thing I told them was that I didn't want DH left in the room. Even tho he was in a wheelchair, I wanted him out with the rest of the people. The rehab fiblet worked well also. And they did do a lot of exercising at first.