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Topic Update on Husband, Nursing Home, Memory Care, and Finances Go to previous topic Go to next topic Go to higher level

By Witsend On 2014.09.13 13:51
I haven't written here in a while, as things have continued to deteriorate in mine and my PWP husband's world. He is still in Skilled Nursing, we are awaiting a room at a Memory Care facility. I pray every day that I can move him out of that nursing home. He started to get aggressive with the nurses, biting and trying to hit them. The nursing home told me I had to hire a 24/7 private caregiver to sit with him. So I am now doing that, at $25. and hour. So, there's another $600. a week going out. The Memory Care in southern California is top of the line, which is what I want, but it will run around $9,000. a month. I've sold our retirement home, and am getting our big home ready for sale. My husband and I are not wealthy people. I took early retirement at 55 to take care of him, so we have his retirement coming in, and that's about it. Luckily we saved over the years, mainly due to his being unable to travel due to health issues.

I hate the nursing home, and hate visiting him there. He no longer recognizes me most of the time, although sometimes he'll "tune in" and seems to know who I am. The nursing home is 7 minutes from my house, so I am there for several hours each day, but it is ruining my spirit and health. I'm sorry this post is such a downer. Maybe what I'm saying can help someone here, although I can't imagine how. Thank you all for being here, and I would be LOST without this forum. I have learned things here that I would never have learned from doctors or nurses. This is where the real stuff gets talked about.

By lurkingforacure On 2014.09.13 15:26
Know that we hear you and understand. I am so sorry you are having to go through this.

I have no idea how you cope, but I guess you just do because you have no choice. Remember how you have stood by your husband at a time when most spouses take an easier way out, and how you continue to care for him as much as you can, visiting him every day, and still, sacrifice your finances to give him the best you can. You should take comfort in that for you are a wonderful wife. I hope I can be as loving and caring as you in own journey down this PD path.

We know what you are doing through.

By Witsend On 2014.09.13 17:56
Thank you so much for your loving response, lurking. It warmed my heart just as I returned home from another exhausting, upsetting visit to the nursing home!

By jcoff012 On 2014.09.13 18:32
Know you are heard and bless your heart for doing your best. Hugs and best wishes.

By lurkingforacure On 2014.09.13 19:33
Those visits are so very hard. I've been there when my mom was in I've mentioned here before, she tragically did not make it.

The point is, keep doing what you are doing, no matter what. Everything you do now, hard as it is, will give you major comfort and peace later. There is no feeling in the world that can replace the feeling you will have knowing you were there for him, at the very worst of times. And even though it may not seem like he knows you, I think he can feel the love surrounding him when you are there:) Hugs, lfac

By Freespirit On 2014.09.15 08:33
Your post was not a downer at all. It's just where you are at right now and it's okay. I'm very glad that you are here sharing with us. Your post gave me several things to think about in my own journey with my PWP. Thanks for your devotion to your husband and setting that example for others.

By moonswife On 2014.09.17 00:49
Witsend, have you tried going to a nursing school and seeking out a student to sit at the facility with your husband? You may find someone who you can pay far less to, and they may be able to get some class credit for time spent with him. It saddens me your life seems to be so tough right now. Wish I could help you more. It sounds like you are in the Bay area, and I am in Disneyland area. Some days I think I am in NEVER NEVER LAND.

By carman96 On 2014.09.17 22:25
So sorry Witsend. You are doing the best thing. It's not right that you have to pay for a private caregiver.
May I ask where you will live when you sell your house?
Hang in there.

By lurkingforacure On 2014.09.18 09:07
I've wanted to share this but have hesitated because the situations are very different, but I think this may help maybe some here.

When my mom was in rehab, we went through a period where they were trying different meds to help with her "anxiety" (which is totally understandable that she would be anxious since she was in a strange a place and didn't want to be there!)

At any rate, I was very present, and came several times a day and always every evening when I would take my mom outside in her wheelchair for a walk-we'd usually be gone almost an hour because she loved it so:)

I started noticing that staff began calling me more and more, and for increasingly petty things. Things like, your mom is crying and won't calm down, she is upset and upsetting the other residents, she is picking at her scab on the back of her head (from where she fell while there:() etc. I would go running up there, and smooth things over. Often she was sitting in a mess and they always acted so surprised like it had just happened.

It got to the point where at 6am one morning they called me and demanded I come up there to help with her. I had not even gotten my kids up or fed anyone breakfast, and got angry. This was an expensive place, and one of the "best" in our area!! I realized then that they were simply using me and the more I ran up there to do their job, the more they would demand of me. I had a heart to heart talk when I got up there, because I didn't want them retaliating against my mom, but at the same time, I could not be expected to be on call for them.

They told me the same thing, that I would need a "companion" at $100.00/day to "sit" with her. I called BS and told them if things were that bad I would move her. Never heard another word about it, she stayed there, not happy of course, and I continued going up there to make sure she was as happy as possible.

Moral of the story: if you let the facility depend on you, very often they will take major advantage, so be careful. It is stressful enough having a loved one in that situation without the added and unnecessary guilt of them pulling something like that. It is the STAFF that makes a place good or bad, not the name of the facility, I learned.

By Witsend On 2014.09.19 21:37
Thank you so much for your replies, everyone. My husband's anxiety was so terrible one day when I was there that I demanded I be allowed to take him out and go to an ER for direction. They called in the psychiatrist, who prescribed Trazadone at night. Within two days he was coherent and I was able to have full conversations with him. He has been that way ever since, except at night when the sundowning starts. I can't say that it was the Trazadone that did it, but that was the only change we had made. He is calmer at night, but still wakes up a lot and is confused. Anyway, on Tuesday the 23rd we move him into the new place. Here's the website, to give you an idea of the kind of place it is:
They have two "well spouse" suites (that are currently filled) where the spouse who doesn't need care can stay there also. I will not be able to move in there right away, as I'm getting our house ready to sell or rent. I haven't decided yet if we'll need to sell it, so that is still up in the air. I'm about 85% certain that I'll be able to keep the house and lease it out. That would be a blessing. Now I am happy that I've had the 24/7 caregivers, because my husband's favorite private caregiver will accompany him to the new place, and will stay with him there for the first 72 hours. I'll try to answer any other questions anyone has. I would be completely lost if it weren't for this forum, and all of you who share with such openness and compassion. Thank you.

By Witsend On 2014.09.19 21:47
I also wanted to mention that I am prepared for my husband's present condition to change at any time. He is coherent today, but he may not be tomorrow. I'm afraid that's the stage we are in at this time. If he stays coherent and able to communicate, I will let you all know about it.

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