Well, it took me two weeks, but I finally pulled myself together enough to write a blog about my placement experience. If you have placed your spouse and reacted as I did, you are not alone. If you weathered the experience better than I did, I am glad you did not suffer as I have been. I would like to hear how you have gotten through this nightmare.
Hi Joan, Thank You for writing of your experience. As a caregiver for my 62 year old husband who has been diagnosed with Younger Onset for three years, I have been following your Blogs with much admiration. You are a source of inspiration for me, along with my caregiver support group. The one thing that I ponder most often is the eventual placement of my husband, whether it be next year or five years. My support group leader continually tells me not to be driven by guilt. She has experienced this as well, and like you, she came to a point where she could no longer care for her husband at home, even with more help than you were receiving. She told me that her relationship improved as there was no longer the physical and mental stress she had been experiencing , and she could visit and spend stress-free time with her guy. Yes, it is lonely, but I already feel loneliness as my hubby is not able to be fully part of a relationship we once shared. When I reach the placement stage of this journey, I will hopefully experience an "unburdening''. I will have gained a bit of independence and not fool myself that I am the only one capable of taking care of my husband. I hate this disease!
Joan, I have not placed yet but he is scheduled to go to a ALF on the 31st. I have read all your blogs and My heart goes out to you. There is no way to know how one will deal with all the variables but I can only hope I'm as strong as you. Yes, I see you as very strong as you have relayed all you have been through over the past six years since starting this web site. You have done your best and the battle is still raging. May you find the added strength to carry on. I don't think anyone can escape the turmoil a decision of placement makes. This is without a doubt the hardest decision I have ever had to make. We have shared 58 years together and all though he has been leaving me in so many ways since his diagnosis in 2006 are physical separation is just to begin. As you said in your last blog all the advice we give each other has to be lived to really understand. You have done all you could do and done it well. May you find peace as you continue this journey.
Hi Joan. I just placed my husband on Monday. This week has been whirlwind. He got out of the hospital today after being sent to the ER with chest pain. Poor guy is so confused. While at the hospital I caught him peeing in the wastebasket. My husband does not have the physical issues that your husband does but I could not handle his increasing needs that seemed to increase daily. I signed up for the PACE program which stands for program for all inclusive care for the elderly. Once he is accepted they will have a team of people meeting to discuss his needs. They will handle podiatry, dental, eyeglasses etc. I was told that the program is in 37 states. It may be worth it for those people considering placement to see if it is offered. The best part is the Medicaid process sounds like it will be user friendly as I have heard horror stories about the process. I live in Ohio and it is only offered in 2 counties in the entire state. Anyway tomorrow is a new day. Thank you for all the insight and information you have provided all,of us.
My heart goes out to you. I cried throughout the reading of your touching blog. I can only hope that the pain of separation will ease as time passes. Thanks for all you do for so many.
I am there with you Joan. Knowing how it is. Being grateful to rest and anxious for his being gone. It has been 7 months now, only after about 2 months did I finally start to "settle in"
Joan I don't know it this is how it will be for you, but here goes. I love Dado more than ever, and since I have been rested enough to see clearly, I see that I love him for who he is NOW, the child like dependant man in diapers and a wheelchair. Gone is my old Dado, here is the new. Yes, though, he still has that deep sweetness that he always had, despite the off the wall occasional outbursts.
Joan I pray and hope for you that this happens, that Sid will look at you the way that Dado, now, looks at me. I see deeper in to him at times, when he lets me, than I ever have..his eyes look like shiny pools. And what I see, is a clear pathway to his soul, and an emanation of his gratefulness and knowing that I have done, and am doing, my very best. "They" can say all they want about this disease, but in these late stages with my beloved, what I see, is someone beautiful and grateful and deeply lovable, someone that KNOWS ME, and loves me.
My dh isn't there yet, but I want to be prepared. In ALF don't they have to be able to do quite a bit for themselves? I would like to understand better.
Yes, which is why my husband is in a NH. I don't want this discussion to go off track into the criteria for different facilities, so please check the home page - www.thealzheimerspouse.com - sometime later in the day tomorrow. I will be putting up a new resource on the left side that is a comprehensive list of how to determine which facility requires which criteria.
Joan, I have struggled with what I could possibly say that could bring you comfort. Here is what I have come to believe in my 4 1/2 years of visiting a nursing home almost every single day and meeting many many spouses. There are two kinds of spouses, the ones who make this all about them and the ones who make it mostly about their spouse. I know that is simplified, but to me it is that basic. I have seen spouses who come daily, I have seen spouses drop them off - never to return, and everything in between.
The reason it hurts you so deeply is because though yes of course you are suffering and mourning the loss of your beautiful life with Sid, it is not your pain you are focused on, it is his. This is how it has always been for me too, it still is.
When Lynn settled in and became happier with his surroundings, when his little world became a happy place for him, when he found comfort and peace, then and only then, did I find a measure of comfort for myself. I have a feeling it will be this way for you too......
The best advise I can give you is to do what feels right for you and Sid. You will have many people telling you what you should do, tell them to piss off! It is not their husband, it is not their life being destroyed, it is not their heart being ripped to shreds. They can't possibly understand. Even those of us who have walked this path before you cannot know what is in the depths of your heart. And truly, that is all that matters.. you and Sid. You will do as you have always done, what is right and best for the both of you ♥
Much love Joan ((hugs))
Coco, your comment brought tears to my eyes. You have come so far my friend ((hugs))