The Long Quiet

Thank you, Becky

I disagree that women are not on the list of Caregivers. I have been caring for my husband since 2013 with his Parkinsons and his confusion, making meals, cleaning our house, making decisions about things that I would have done with him. He is the first and the last that I think about everyday. I will always have his back. He will know until he doesn't that I love him and caring for him matters. I think women and men have different ways of coping. Some are good and sometimes we both mess it up. I still believe in I'm sorry, suggesting alternatives in a kind way, and let him know I will love him until the end! I am not perfect , but I try to see things that could be dangerous for him are out of the way or gone, make sure that he is comfortable, help with bathing ,etc. Just a females point of view..not a criticism please know that!🫂 🤗

My husband just went into a senior living residence where he will get therapy, both physical and speech/cognition. A recent fall exacerbated his decline and I can no longer care for him at home. I have an aortic aneurysm and am limited in what I can do. I admire those folks who care for their loved ones at home. I miss my husband terribly, even though he's only a ten-minute drive from our home and I see him everyday. He wants to come home and doesn't understand why he can't, but Alzheimer's doesn't get better and he will need much more support than I can provide. I've been taking on more and more over the past five or six years, but his fall was the crisis that prompted action. But here's the thing: I feel guilty and unbelievably sad. Imagine leaving a reluctant two-year old at preschool for the first time or dropping off your child at college to enter a totally different world than home. It's a wrench, any way you slice it. I'm not sure I'm doing the right thing, though my children are adamant that this is necessary (my daughter is a social worker who works with elders all the time), and a week ago he could barely stand. He can walk on his own now, but cognitively he's lost a lot of ground. I'm at a loss and am having a hard time emotionally, even as I run around like a demented puppy trying to get everything done that needs doing. Any words of comfort or advice? Anyone?

I’m in the 2nd year of my journey with my mom. I promised Dad I would care for her. We get a phone call every evening from my sister but the phone is usually quiet. Not very many visits. I’ve started to take online courses so I can be here but also get some intelligent conversation.

Hello:
Virtual hug and support to you. I feel you are ahead of me on this journey and I see what is ahead. I think about future placement of my husband in a facility when I can no longer care for him. I imagine the guilt must eat you up inside. However, since you physically can no longer care for him your decision was made for you.
Here's a quote I copied from this website:
Mom,
We love you.
We are only acting out of love.
You have Alzheimer’s, a form of dementia.
Your short term memory is about 5 minutes.
You were not eating, drinking water or taking your medications downstairs.
You fell many times and had to go to the hospital.
We can no longer provide the level of care and attention that you require.
We moved you to the memory floor.
There are professionals and an increased staff here to help.
They will give you better care and attention than we can.
We feel that this was the best way for you to get better.
You can’t remember or understand how much help you actually need.
We know you don’t agree with this decision.
We discussed this with you before you were moved.
It was a very difficult and painful decision.
We are just as upset about this as you are.
Remember this.
You will always be loved.

All the best to you. 💓

Thank you. This is just what I need to hear. It was the fall that precipitated this crisis with my husband and yesterday I had a fall myself. I was trying to do some yard work, stumbled and fell down. I couldn't get up and there was no one around to help me, so I crawled to my car and used the door handle to pull my self up. I'm still shaky today. I, too, am going to need more help, which means spending more for, well, everything. This is a scary prospect, when a month ago I thought I was embarking on a grand adventure. My husband was stable and I had plans to do things to my house. I'm glad the young don't really know or understand what we elders are going through. I wish I'd understood my mother better, but I'm sure she didn't want to burden me, as I don't want to burden my own kids. My daughter is a social worker and works with people like me all the time, and even she doesn't really get it. Sometimes what we need isn't advice--we're not stupid, we know what needs doing--what we need is comfort. In a strange way I'm able to show my husband more affection now that he's in independent living than when he was at home. I can't care for him physically. Others can do that much better than I, but I can be loving. That's what I can do. I honestly believe that keeping a loved one at home when they've gone past the point where you can provide adequate care is a mistake if you can afford something better. But we each know what we need and should listen to our gut. Thank you for your kindness.

My heart goes out to you. I am in a similar situation, except my spouse is still at home. I am a polio survivor and at 81, my walking has severe limitations. In spite of that, like you, I have taken on all the household responsibilities, management of his care, and management of our rental properties. I know this can not go on indefinitely, and I continue to look for outside help and try to simplify daily tasks, when possible. The thought of us being separated, after 63 years together, is gut wrenching, I cry just thinking about it. However, I am grateful to be the one who will make the decision and, God willing, oversee his care. I have always prayed that God take him first, so I could be there for him until the end. Just know that you are doing what is best for your husband, the same way you would do for a child. The sadness you feel is from the loss of not having him beside you. His wanting to return home must be like a knife to your heart. You were chosen to be the strong one. If possible, get therapy or speak to others in the same position…possibly even someone who also has a loved one where your husband is receiving his care. Cry when you need to, stay connected to friends, don’t be afraid to ask for help, know you are doing the right thing, for both of you. I am right behind you in this journey.🤗🙏

Thank you so much. This is the hardest thing I've ever done, and I've had some experience with difficult life choices. I know it's the right thing to do--to have him in a safe, comfortable place--but the look on his face every time I leave him there breaks my heart. I get through the mornings, my visits to him, and by evening I'm an emotional wreck. That's when I weaken and say to myself, maybe I should just bring him home. But I can't. I'm not able to physically assure his safety and my own health is not great (aortic aneurysm). I'm nearly 80. I know I sound like I'm rationalizing. Perhaps I am, but I don't see any other option. My daughter, who is a social worker who has years of experience dealing with situations exactly like mine, tells me I should find a therapist. I've been to two therapists in the past, when I was in other kinds of difficulties, and I think therapy in a crisis can be very useful, but with all the expenses I'm now incurring, including his two-week stay in the hospital, the implantation of a pacemaker, and two more weeks in rehab, and now the senior living home, finances are a concern. You say I was chosen to be the strong one. I have no doubt you're right; I've had to be strong before. But a person can be strong on the outside and an invisible, quivering kitten on the inside. Thank you for your kind thoughts. Those are what make the biggest difference.

Dear pamela78

I had to move my husband of (at that time) 52 years to Assisted Living. He didn't understand why I wasn't going with him. I explained that a person had to require assistance in order to be given a room there because they are limited number. That he could understand. The first four months were awful. I could be sitting watching TV or reading and the tears would just start out of nowhere. It was just so sad. Dementia is truly a very long goodbye. We grieve continuously over one thing or another. What I did to deal with it was give into the sadness for awhile and then I just said I had to give it up because it would just make me sick and I have to be healthy so I can visit him and advocate for him. It took about four months for it to slow down to once in a while. That was almost two years ago and in January he was moved to nursing care. I still have moments when the sadness just takes over and I let myself be in the moment and cry or swear or whatever let's it out.

Another resident in Independent Living with Care told me it takes four months to get adjusted. No one wants to be there and all we can hope for is that with time we'll become more numb. I think I'm in shock right now. The sadness is overwhelming at times and the guilt isn't far behind. I can't help feeling that I've put my husband in jail while I remain on the outside, free.
Hold on tight.