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This is my first post. I just discovered this supportive site a few days ago and have been reading the shared experiences here. The compassionate support spoken here, non-judgmental, kind, makes it easier to say what we feel. Mnitchke, i understand what you are feeling. Your love for your wife shows in your words. But while her body is still on this earth, she has gone. It has been said that we are our memory. I believe that is true. As I live with my dear, once clever and wise husband and watch him struggle to say what he's thinking, to ask a question that slips away if not answered immediately, to ask why we traveled to a place he wanted to go, to tell me again that I didn't tell him we were doing something or that someone is coming to visit, to call his daughter or granddaughters "that girl" or "those girls" - unable to remember their names, I feel the fear of what happens next. I can no longer share a story or watch a movie with him. His attention span is short. He, who once loved to watch sports - football and baseball mainly, will sit for hours watching the tv but can't tell you what is going on or who is winning. On the physical side, he is having bathroom issues, can't remember that he's eaten, heats coffee in microwave but doesn't drink it several times a day and during the night, sits so much of the time his legs are getting weak so he has trouble getting up from the chair. And on and on. I miss him. I miss the man who could tell jokes, who has always been so caring, who enjoyed being with friends and family, who I could tell what I was thinking and ask for his opinion. Long before this became so severe, he told me he didn't want to live without his mind. He fantasized about a "little pill" he would take to end it all if he ever "lost" his mind. At that time, I told him jokingly that he'd have to find the pill on his own or I'd be in trouble. So I understand what you are writing about the life you envision before you and the life you had hoped to live. You have made sure she is well cared for and safe. She doesn't know whether you are there or not. You are the one feeling guilty for wanting to do things that make life good for you. It may help if you ask yourself what she would want you to do. You know she loved you once. And if she had her mind, she still would.
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My last post here was in August. Since then my wife has continued to decline physically and cognitively. She barely shuffles when she walks and even then she has to stop every 5'-10'. When she walks she holds on to the walls, the railings for balance I guess or safety. She says she loves me but she says that to the PSW's who care for her too so I don't feel very special about her saying that to me. She is now on pureed food. She is unaware of her bodily actions-she often puts her feet up on the dining table at meals. She lays on her bed with her feet on the footboard, and feet on the pillows.
Every rare once in a while she will utter something so candid, so common sense that I wonder "where did that come from?" Obviously there is still a person in there, I just wish I could coax more of her out when I am with her. I am so stressed watching her when she doesn't know I am there. Seeing her reach out to anyone who comes near. Speaking to them as if she knows them or they her. Most of her verbalization is gibberish, sometimes she will actually say complete words like: "Yes, No, OK, Alright, Let's go!" and a few others. Right now because she cannot communicate about herself it was discovered (at my insistence) she has a UTI. And after 2-3 weeks that UTI is now made up of 2 E-Coli bacteria for which she is receiving an antibiotic.If she could tell us about her discomfort this may have been caught earlier. I suspect with 6-12 months her mobility will be reduced to being transferred to a chair of some type. I have given up hope and I am now resigned to watch her sink into a situation no human being should have to endure.
Hello @mnitchke Yes, watching a loved one descend further and further into the depths of chronic, irreversible disease is hard to watch. I know it was terribly difficult with my wife for sure. In her case it was not only hard on me, but she was cognizant of each loss she incurred and that was a totally different kind of devastation for me to witness. Tough stuff for sure for you to go through.
It is hard to remember, but when in the throes of dementia our loved ones are changing before our eyes and we are unable to instigate any type of changes in them, no matter how hard we may try and how hard we may wish it to be different.
It is good to hear you are there for your wife and are watching for those things the staff does not always see.
I wish you continued strength, courage, and peace.
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Thank you, thank you. Big Hugs from me. You and I are under the same shadow.I am tearing up because what you say, said is exactly how I feel, felt. My biggest regret is that my wife never understood what was happening to her so we could never talk about it, plan for it etc. And then it just hit like a bomb. You are wise and strong and true. I always wanted time to let it 'sink in' to prepare for it. I sit alone at night thinking all this stuff. Why her? Why me? Hasn't she suffered enough? I don't even know if she is 'suffering', now.