If there’s anything I’ve learned about dementia, it’s that we really don’t fully understand it and it’s so much more complex than just “forgetting things.” I feel like it’s important to still visit because you just never really know what they are or are not remembering. And the feelings you bring aren’t forgotten. When it comes to my grandmother, so often she doesn’t remember what my name is or how I’m related to her, but she knows that I’m “her people” and that I’m kind and caring and I stick by her no matter what. I suspect she will always have those feelings for me even when she can’t remember who exactly I am. That saying goes that people might not remember what you did, but they will remember how you made them feel.
It is important to visit enough that you can be sure your spouse is being treated properly. Sometimes even the most dedicated care givers will prioritize one patient over the other on a busy day. If they are worried a particular patient has a loved one coming, that patient will get the priority. You don't have to visit them as often after they don't remember you. You certainly can if you want to see them. There's nothing weird about wanting to visit because you do remember them. But it is painful when your loved one doesn't know who you are. And there is nothing wrong with preserving your own heart and making those visits less frequent. In the end it is up to you. You are the one who will remember. You are the one who will have to live with your choice. Some people are haunted by the fact that they didn't visit enough. Others are haunted by the memories of their loved one freaking out that they were there thinking a stranger was in their room. My grandmother sometimes knew I was me and sometimes thought I was my aunt. Sometimes she thought I worked at the nursing home. I found it was worth it to go for the times that she did know who I was.
The people running the facility need to see that there is someone who cares about this patient. They need to see that if proper care is not provided, the spouse (you!) will see and correct the problem, and even report the facility. These facilities are typically very understaffed. You need to be there to make sure your spouse is getting decent care. It can be heartbreaking when a loved one loses the memory of his/her love for you. But, your role here is to be a good guardian of your spouse, and that includes visiting as much as possible. I wish you the very best of luck with this. It is not easy.
To GingerMay Yes the heart still remembers! Excellent answer. People with dementia remember "how you made them feel" as Maya Angelo said. People may not remember what you said or what you did, but will remember how you made them feel!
I answered earlier about my experience with my mom. Then I got to thinking afterwards that you were asking about a spouse. Which got me to thinking about what is best for the spouse who has no clue may not be the best for the visiting spouse who isn't remembered at all. I do feel for you because that must rip your heart out each and every visit. hugs to you.............
As many others have said, I think it is important to keep going. My dad couldn't remember my mom or me and my siblings but it was very clear he knew we were a familiar and loving presence.
Hi MsPatS! There is no right or wrong answer to your question. Years ago, after my mother could no longer take care of her mother, with Alzheimer's, and had to get away for her sanity, she told me that if it came to the same situation with her, not to feel guilty if I go on with my life.
Now we are finding ourselves in that very situation. Mother can no longer remember us most of the time, however, I visit her at least twice a week. There are moments of awareness of some sort, and even times she laughs out loud at family jokes. Occasionally, she will answer my questions rationally. I hold her hand and feed her lunch. More than once, when I said I had to go, she squeezed my hand so tightly, I couldn't go.
My father, in Independent Living, and brother go 7 days a week. I offered to let my brother, "have a day or two off," by taking his place After thinking very briefly about it, he answered, "I can't not see Mom and Dad every day." He also said "I don't want to hear anyone say they feel guilty about not going to see Mom, because, she is here."
Other members of our family come when they are in town, while others that live in town cannot fathom seeing her deteriorate. I judge no one.
All I can say, is if you feel guilty, go as often as you are able. If you are at peace with not seeing your loved one often, then accept that peace. We all can only do what we can do.
Sorry that some people are more interested in your profile being updated then providing useful input. My mom has dementia and thinks im her brother. Sometimes she thinks im a stranger. No matter who she thinks I am she expresses love when I hug her. The soul never forgets what love is.
A view from the patients perspective. I am still of reasonably sound mind. Our affairs have been looked at by two attorneys who agree we've lined up our ducks for the security of my young family three of which range between the ages of 11-21. I am 58 and was diagnosed two years ago with early onset dementia, maybe ALZ. I have made my wishes pretty clear about wanting to be placed in a home 100 miles or more from where we live. Once I am at the point of having to be institutionalized, I don't want my DW or children to feel like they need to be constantly visiting once I no longer remember them. I want them, my DW, who is in her early 50's, in particular to be able to pick up and get on with a new life for the rest of their lives. My mother was DON of a very large Catholic Extended Care Facility for many years. From a very young age we all spent time there visiting patients, eventually to include my grandmother and uncle who both died there when we were adults. My goal for 2018 is to identify the facility I would like to be placed in and see what type of arrangements I can make in advance for placement. I am very lucky to have been able to make the decisions needed and truly express my feelings to my family all of whom have said they understand and appreciate my thoughtfulness. Just another perspective to share with other families.
Grammy M! YOU are a treasure, not only to your husband but all those who are in his new world. You are blessed with a kind, understanding, and compassionate soul. Thank you for sharing.
I am in the camp of “the heart knows even when the mind doesn’t” ~ at least that was my experience with my Mom and with her Mother before her. They had different types of dementia but the heart knew what the heart knew.
My parents said to visit as long as they still know visitors and are comforted by the visits. If they got to the point of not knowing any family they said to not drop our lives to visit. They said they gave their kids a peaceful entry into this world, so it was our duty to allow them a peaceful exit.
As jfbctc59 has expressed, life is to be determined by him, not others. It is family survivors duty to carry through as expressed. My spouse, now at the snf, has similar wishes should he ever become mentally unaware. If any wishes were expressed to MsPatS by the spouse, carrying through on such wishes is the most kind way to treat a spouse. If nothing was decided while capable, keep visiting unless it just becomes too stressful for either or both spouses.
The kindest thing is to follow the wishes of each family member, Dementia or no Dementia.
My experience is that it's important to visit because the patient may recognize more than you know. That said, you need to balance how much regular visits are draining you.Toward the end of his life, my husband was always glad to see me, and asked how long we had "been together." He was both startled and pleased to learn that we were married. I don't think it's a coincidence that my husband died in his sleep on the evening of the first day I was too exhausted to visit him. I have accepted this.
I had a friend whose mother was sort of a nightmare the whole time I knew my friend, even though my friend was kind and for all that I knew a wonderful and very bright and giving person. Then her mom developed dementia. She "knew" my friend as her best friend, a confidante and someone in whom she could confide things about her "terrible daughter." My friend was convinced it was her mom's subconscious working out that she had mistreated her daughter for the prior 20 years (including leaving her out of her will periodically). So we don't know what is going on in the deepest recesses. Do what feels right, as others have said. And please contact an elder care attorney to see if you can sort out the finances, which may give you more courage to visit your spouse.
Yes the heart still remembers! Excellent answer. People with dementia remember "how you made them feel" as Maya Angelo said. People may not remember what you said or what you did, but will remember how you made them feel!
There is no right or wrong answer to your question. Years ago, after my mother could no longer take care of her mother, with Alzheimer's, and had to get away for her sanity, she told me that if it came to the same situation with her, not to feel guilty if I go on with my life.
Now we are finding ourselves in that very situation. Mother can no longer remember us most of the time, however, I visit her at least twice a week. There are moments of awareness of some sort, and even times she laughs out loud at family jokes. Occasionally, she will answer my questions rationally. I hold her hand and feed her lunch. More than once, when I said I had to go, she squeezed my hand so tightly, I couldn't go.
My father, in Independent Living, and brother go 7 days a week. I offered to let my brother, "have a day or two off," by taking his place After thinking very briefly about it, he answered, "I can't not see Mom and Dad every day." He also said "I don't want to hear anyone say they feel guilty about not going to see Mom, because, she is here."
Other members of our family come when they are in town, while others that live in town cannot fathom seeing her deteriorate. I judge no one.
All I can say, is if you feel guilty, go as often as you are able. If you are at peace with not seeing your loved one often, then accept that peace. We all can only do what we can do.
I have made my wishes pretty clear about wanting to be placed in a home 100 miles or more from where we live. Once I am at the point of having to be institutionalized, I don't want my DW or children to feel like they need to be constantly visiting once I no longer remember them. I want them, my DW, who is in her early 50's, in particular to be able to pick up and get on with a new life for the rest of their lives.
My mother was DON of a very large Catholic Extended Care Facility for many years. From a very young age we all spent time there visiting patients, eventually to include my grandmother and uncle who both died there when we were adults.
My goal for 2018 is to identify the facility I would like to be placed in and see what type of arrangements I can make in advance for placement. I am very lucky to have been able to make the decisions needed and truly express my feelings to my family all of whom have said they understand and appreciate my thoughtfulness. Just another perspective to share with other families.
As jfbctc59 has expressed, life is to be determined by him, not others. It is family survivors duty to carry through as expressed. My spouse, now at the snf, has similar wishes should he ever become mentally unaware.
If any wishes were expressed to MsPatS by the spouse, carrying through on such wishes is the most kind way to treat a spouse. If nothing was decided while capable, keep visiting unless it just becomes too stressful for either or both spouses.
The kindest thing is to follow the wishes of each family member, Dementia or no Dementia.