My husband was home with me for 8 years until I was forced to put him in a nursing home (i fell and broke 3 ribs). Even after he stopped talking and was no longer mobile, I felt such a sense of “duty” to be there every day to make certain he was properly cared for and for him to “know” I still loved him. It was a very long goodbye (he was 53 when he was diagnosed and then was determined 100 percent disabled by the VA.). Dealing with the VA was difficult but I was grateful that they covered his care financially. We really don’t know what they know when they become nonverbal but I do know that near the end, his PTSD was so bad (he could no longer suppress it). I don’t know how much he “knew or remembered”but I felt it was my honor to be there for him and for me. If he could remember the horrors he witnessed in Vietnam to the point of screaming and breaking out in a sweat and have a horrified look on his face, then I always hoped that he would still remember me. Or, was it wishful thinking? It really didn’t matter. I needed to be there for me. And him.
My daughter visits her father, my ex, every day, even takes his dog to visit. She says that all he does is ask about her brother (who rarely visits) and call her "a slave." But she says that the nursing home would not care properly if she wasn't there to oversee everything. He has some dementia and thinks that his son is building him a new house, and he doesn't realize he is in a nursing home, thinks it is a hospital temporarily. He has a "sitter" 10 hr a day. It's all costing about $15,000/month and he will be out of cash in about three years (He is 83). My daughter is a nurse and has switched to night shift so she can be there for her dad during the day. I really don't think she can continue this pace much longer without getting sick herself. She is not married, no kids. My son has a wife, a day job and a family. I don't excuse his behavior but I think my daughter is doing too much. The divorce was so acrimonious 35 years ago that I don't really care about what happens to my ex, just don't want our kids over-burdened. My second husband had mild dementia and died in hospice 3 weeks after major stroke nearly 5 years ago. Both my children regularly visited their stepfather almost every day, but then it wasn't for so long. I just pray that I will die before I develop dementia. I have already quit taking statins and BP drugs in hope I will have a stroke or heart attack before I get in that shape.
Kimber -I had that return moment of a poignant, enduring memory - that rather heart-breaking 'breakthrough' when a long-time Dementia patient, has flash recognition and shows gratitude, after all. (I understand that can happen wth Vascular Dementia). Once, in the early hours, after long struggles and usual no sleep for me, as a 40+yrs wife /then Carer (it included help over extra health issues), as my old husband was settled back into bed, he suddenly emerged from his inner world focus - looked up briefly,and said ' Are you doing all this for me? If I knew who you were, I'd say a little prayer for you' . He did, silenty,seconds before he slipped back into memory loss, again. Those last stages moved along in fits and starts - there were times when I was exhausted beyond my belief - then when we heard that there was a facility offered for patients to be transferred for a short break, we looked into it. But it was a no-go - we were horrified to find examples of folk parked in a wheelchair at the end of a corridor for hours, or similar- which would not have worked in a practical way, let alone as caring support. As far as a person in question being apparently unaware,and past any well-intended distractions - just simply 'gone' - in the long run, I would echo the trend in comment by others: 'believe the heart knows what the mind may forget'. Evidence of that, does emerge from time to time. I would also say there could be less underlying possible miserable agitation, in the security, reassurance of a truly familiar presence, regardless of timing. or anything else.. In reading of so many cases here,. where worries, guilts, can lie more with the visitor than the visited, and while the illnesses inevitably fluctuate - I do believe the only option is to 'go with the flow' - for everyone's sake ! .... Good lifetimes taken into account, too.. as you are kindly aware....
My mom and I had a good relationship. She was my best friend. When she was ill, she asked me one day who I was. I told her my name & that I was her daughter. She said 'how are you my daughter?' Then a few days before she passed she struggled to sit up, said my name, and ' I love you SO much.' Clear as a bell.
Also, when she struggled with sundowners, she'd scream at everybody, but when I walked in the room or if someone put the phone up to her ear (with me on the other end), she'd calm down. It was a very hard time, but the essence of our relationship was still there even though she forgot the details.
I visit my 88 yr old dad almost daily. He has declined quite a bit the past several month. I always ask how he is then talk about the weather and what’s going on. I tell him what’s for lunch, dinner. I bring him treats. He hasn’t said my name for a long time and I’ve accepted it. Once in a while he asks where she is-she being mom and I always fib as mom passed away almost 4 years ago. I don’t stay long. Some days are better than others.
Oh my, yes it is important to visit your spouse. My husband hasn't recognized me in over a year, but I continue to go to the nursing home 6 days a week to visit. I hold his hand and talk to him. Even though he cannot relate, I know he finds comfort with me being there. Please do not stop visiting. Your spouse may no longer know you, but you know him. Talk, sing, read to your spouse. Mention relatives and friends. Your spouse may not remember you but usually a name of a relative or friend will bring on a smile. It is so vital to share memories. Nursing home residents get so lonely. The days are long and empty. Many have no one that visits them. Not only visit your spouse, but talk to the other residents as well. I take snacks to share. Sometimes colorful stretch bracelets for the ladies. Simple coloring books for those who wish to color. Or, simply sit and talk to them for a few minutes. Don't be surprised if after awhile you find yourself wanting to go and visit. The residents become friends. If they are veterans or served in the military, many love to talk about their "old Army or Navy days!" Please, continue to be a part of your spouse's new world. It's a lonely place, but love doesn't end because of Alzheimer's. Sometimes spousal love grows stronger. Wouldn't you want the same if the situation were reversed? God bless you.
My Mom was in a nursing for two years with dementia and physical ailments as well. I visited her regularly for 2 years and she didn't know who was but she did recognize me as someone who came to see her. It was hard for me but I just looked at my visits as making sure she was comfortable and cared for.
Hey Pat...that sounds heartbreaking. Emotionally, I don't know if I could handle that. However, it is important to be sure he looks good, that he's been cared for, etc. so it's good your son is going, too. What are his visits like? Maybe you could go together? It may make it easier for you... I would bring food that he loves. It always works with my dad. Seeing an elder attorney is great advice. I found out stuff I would have never found out otherwise. Do your best and let go. More power to you, Pat.
I've found that visiting with mom at dinner time daily works well, and I can do it since I'm retired and the NH is close by. Hopefully, it helps mom somewhat. (If someone told me I'd be doing this daily, I'd have said they were nuts). It's a lively place. I talk to mom as I always have, telling her what happened that day or what's going on in the family. There's not much to tell but since she can't remember much, I can repeat yesterday's story or make something up, lol. She never actually initiates conversation, and her comments make no sense, but she can still laugh and livens up a bit most days. It can take awhile to feed her, but the time passes quickly. Depending on her mood, I may wheel her to her room, pick it up a bit, put her CD earphones in and let her listen to choir music she likes, maybe clean her nails, little things the aides don't have time to do. The aides call me by my first name. Frankly, this has become my social life right now, but it's not so sad. Another woman comes in fairly often to sit with her hubby, and one of the aides has a father there, and she sits and eats with him before she starts work. I was told I could eat also (the food is actually good) but I settle for a cup of coffee. I'm grateful I found a very decent place for mom and that she's relatively comfortable.
Mom passed 2 months ago at 97. She was in a NH. For the last few years she (very) rarely knew me, my sister, or my brother. But she knew in her heart we loved and cared for her, as she did us, and was always happy to see us. To see her light up when each of us walked in the room was worth the weekly trip — 90 minutes for me, 35 for my brother, 20 minutes for my sister. She battled the disease for 10 years; on the rare occasions we missed a visit, we felt guilty. She never remembered her aide who was with her 3-4x/week for 6.5 years, calling her “my friend” and lighting up when she was there.
Like GingerMay, I believe the heart knows what the mind may forget.
My mother is 95 and has had dementia for the past 3 years. Mom no longer remembers anyone. I visit 3-4 times a week and she does not know who I am. I visit her even though she does not remember me because instil know who she is. I remember what a good mother she is and the times we share. On ocassion I feel happy because she says I am her daughter. She may not know me most of the time but her smile tells me she is happy to see me.
MsPatS - - you may want to update your profile, which indicates that your husband is at home even though we now know he's in a VA facility...
You said that you're watching your savings disappear - - I see you are in Maryland and I have no idea what the rules are there, but you may want to see a knowledgeable Elder Care attorney to find out if you can conserve some of your assets as the well spouse.
Depending on what your assets and your income are, your husband may be eligible for Medicaid assistance, or even VA benefits if he was in an active war or conflict situation.
I believe if they don't remember you, they will remember the feeling of being around someone who cares for them which is totally different from being around the staff all day. While the mind forgets, the heart still remembers. The frequency and duration of your visit is up to you, so do whatever makes sense. This is heartbreaking so also do whatever you can emotionally handle. As long as your loved one is being properly cared for, no need to feel guilty about anything.
Thanks for your response. The VA hospital he is in is over an hours drive. One of my sons goes down almost every week. I try to go once a month. When I am there he will not stay near me as he thinks another woman is his mother and a younger one his sister. Both of them are deceased. I watch our savings disappear, it is just scary. I don't know how to deal with my fears or guilt of not going more often.
I always remember a story of a gentleman who use to join his wife at her Memory Care center for all of her meals. Friends asked him why does he go since she no longer remembers him. His answer was " I remember her".
This is a hard one. My wonderful step mom has been married to my dad for 16 years and they dated for 12 before that. So she has been with him for 28 years and they had a great relationship until the end when she was 24/7 for five years after his stroke. He was a demanding and critical patient who slowly slid into dementia.
He has been in the nursing home for the past year and cannot remember anything more recent that 35-40 years ago - about the time my parents divorced. He sometimes thinks my stepmom is my mom - and will shout at her, because he thinks they are divorcing. It has been incredibly hard on my stepmom.
but she visits 2x per week to make sure all is taken care of - gets him new clothes, etc as he needs. Recently i was there with her and my dad said to her "I know you are important to me, i just wish i could remember you" - it was a bit heartbreaking.
Also, when she struggled with sundowners, she'd scream at everybody, but when I walked in the room or if someone put the phone up to her ear (with me on the other end), she'd calm down. It was a very hard time, but the essence of our relationship was still there even though she forgot the details.
However, it is important to be sure he looks good, that he's been cared for, etc. so it's good your son is going, too.
What are his visits like? Maybe you could go together? It may make it easier for you...
I would bring food that he loves. It always works with my dad.
Seeing an elder attorney is great advice. I found out stuff I would have never found out otherwise.
Do your best and let go. More power to you, Pat.
Like GingerMay, I believe the heart knows what the mind may forget.
You said that you're watching your savings disappear - - I see you are in Maryland and I have no idea what the rules are there, but you may want to see a knowledgeable Elder Care attorney to find out if you can conserve some of your assets as the well spouse.
Depending on what your assets and your income are, your husband may be eligible for Medicaid assistance, or even VA benefits if he was in an active war or conflict situation.
He has been in the nursing home for the past year and cannot remember anything more recent that 35-40 years ago - about the time my parents divorced. He sometimes thinks my stepmom is my mom - and will shout at her, because he thinks they are divorcing. It has been incredibly hard on my stepmom.
but she visits 2x per week to make sure all is taken care of - gets him new clothes, etc as he needs. Recently i was there with her and my dad said to her "I know you are important to me, i just wish i could remember you" - it was a bit heartbreaking.
Do what feels right in your heart.