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.
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.
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.
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.
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.
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.
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.
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.
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.
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.............
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!
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.
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.
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.
MsPat, I feel so bad for you and your husband. I wish you a day of good memories for all your past anniversaries.
My mother is the one with dementia, and that's hard, but I can't even imagine loosing your life partner to this awful brain disease. My heart goes out to you.
We used to visit Mom twice a week but she hasn't been a happy camper throughout this disease (not that she ever WAS a happy camper) and it caused me great deal of depression after our visits. Once a week worked better for our schedules anyway, so that's where we left it. We also limit our time to about 20 minutes because she just can't process anything more and it tires us out too.
She doesn't know who I am but knows that she's seen me before. She vehemently denies that I'm her daughter and gets hostile if I bring it up.
She's at beginning stage 7 Alz. and there is no conversation initiated by her. If she does speak, it's "I have a terrible headache" or "I want to die." She never smiles anymore. I'm not expecting her to be happy but she's chronically miserable, often shouting at the attendants. It's all I can do (sometimes) to be there once a week. (When we placed her there, the administration had a rule that they have to have a family member visit at least once a week. This is in Tijuana, Mexico.)
So, I guess every situation is different. Do what your heart tells you. Do what you can mentally tolerate. Do what you think is "right". Do what you would want them to do to you. Do what you can do 'without crying'.
I'm sorry. This is tough. There is no one right answer.
My heart goes out to you. It would be wonderful if you could go visit today and recognize your anniversary, but it would be heart wrenching to go and be ignored because he no longer knows you.
If you can, make today about your memories of the good times. Get out to a place the two of you enjoyed visiting, take yourself out for dinner at your favourite restaurant, or prepare a favourite meal at home and set a pretty table. Hold the love you know your husband had for you in your heart.
There is no 'rule' that you must visit him on any particular schedule, do not let anyone guilt you into that idea. Some people go daily, others less often and some not at all. It is not a reflection of their love for their family member.
I firmly believe that people visiting NH or Memory Care places helps make sure the patient is well care for. Over the years as family and friends in facilities, I would pop in at different days and hours, just to make sure they were being cared for. I remember one friend who had AZ, one day he looked at me and clearly asked if I still lived on Strawberry Drive. I hadn't lived there since the 70's, but I said "Yes, sure do". For me, going helps make sure they are getting proper care.
I also urge you to see an Elder Care Attorney, and the County Office on Aging or whatever they call it where you live. Get some advice on your finances. Our Attorney amended our trust so I wouldn't be in danger of losing the house.
I am so sorry for what you’re experiencing. I can’t imagine the devastation of having your spouse not want you near. We saw another aspect to this when my mother was in a nursing home. When our family visited and showed we cared, it caused the staff to see our care and it made them care more for her. It’s probably not the best of human nature but we found it true anyway. None of us can say how often your visits should be, but they should be often enough for the staff to know you’re involved and caring, and keeping an eye on them also. Blessings to you through this
Please try to see an elder care attorney to make sure you are not putting yourself in financial ruin and that your husband is getting all of the aid available to him. God Bless You and your family on this most difficult journey.
Happy Anniversary MsPat🎉💕 I can not begin to understand how your heart must ache at you dear husband not knowing you, know this though, it is that nasty disease and not the man that you married 56 years ago. I bet if he could, he would hug you and thank you for 56 wonderful years of putting up with and loving him. Do something nice for you today! Love and hugs to you!
My parents were both in Memory Care, Mom for three years and Dad for 6 months. My Mom didn’t know us at all for those last three years. But as others mentioned -I still knew her. She used to perk up and chair dance when I played Elvis for her on my phone. Occasionally -I’d see a slight glimmer of the old Mom. My Dad was very confused about what was going on, but he knew me right up until the day before he passed. I found that the more you are there and involved with staff the better care your loved ones get.
Thank you all for your advice. The sad part is my spouse will not let me sit or be near him, he thinks someone else there is his sister and another his mother. My son has the same issue, it helps to know he is being well cared for. Any memory of our life together is gone. the drive is 1 and 1/2 hours each way. Today is our 56th anniversary.
If any post could get 5 stars 🌟🌟🌟🌟🌟it would be this thread. Beautiful.
Towards last months of my mom’s life (Lewy body Dementia) she thought I was a specific long deceased Aunt. This Aunt died in the pre-war 1930’s & had stayed with mom’s family in the 1920’s off & on. It occurred to me that perhaps this when Mom was happiest in and I started having conversations with her as if it was that era. Hit & miss but when it was good found out a lot of history & family dynamics. Took yearbooks & photos which she could pour over. Visiting made her happy & recollecting this now makes me happy.
My mom is stage 7 Alzheimer's. She hasn't recognized herself for almost 2 years... We keep her away from mirrors because she doesn't know "why that lady is starting at her." She slowly forgot all names since then... About 6 months ago she quit saying "I love you" to my stepdad... She used to say it each time he visited. She lives at my home, it is a 45-60 minute drive from hers. I stayed with her for about a year but it made my life too tough with work and family. I work full time, mostly from home.
My step dad makes the trip to our house every other day to see mom. I think she knows him inside, every it she can no longer express it on the outside. I feel the same way about her recognition of me.
My sister comes occasionally and my brother not at all any more. It is not that they don't love her... It is just more difficult for them to see her in this state. I think each person has to do what they think it's right. There is no right or wrong way.... We do the best we can and as long as our heart is in the right place, it will all work out.
My heart breaks for you. I would say visit as long as you are able to do it without severe damage to yourself. The reason I say this is the at home assistant caregiver I had for my mother in law worked part time nights and weekends at a facility. It is a nice facility, but sometimes (like at any business), the facility could be understaffed. She explained that when this occurred, baths, or other 'special attention' had to take back seat to meds, meals distribution, and toilet care. In her view those who had family members checking on them appeared to receive better service daily and particularly in the event of shortage. She always told us that if we ever got to the point where we had to admit Miss Ruth, we should make sure to visit as often as possible. God bless you for the care you give. Whether your husband knows you or not, that staff certainly knows who you are.
In reading the comments, I understand that it isn't so much you don't want to visit as it's creating a hardship for you. Follow your heart is the only advice I have.
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.
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.
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.
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 feel so bad for you and your husband. I wish you a day of good memories for all your past anniversaries.
My mother is the one with dementia, and that's hard, but I can't even imagine loosing your life partner to this awful brain disease. My heart goes out to you.
We used to visit Mom twice a week but she hasn't been a happy camper throughout this disease (not that she ever WAS a happy camper) and it caused me great deal of depression after our visits. Once a week worked better for our schedules anyway, so that's where we left it. We also limit our time to about 20 minutes because she just can't process anything more and it tires us out too.
She doesn't know who I am but knows that she's seen me before. She vehemently denies that I'm her daughter and gets hostile if I bring it up.
She's at beginning stage 7 Alz. and there is no conversation initiated by her. If she does speak, it's "I have a terrible headache" or "I want to die." She never smiles anymore. I'm not expecting her to be happy but she's chronically miserable, often shouting at the attendants. It's all I can do (sometimes) to be there once a week. (When we placed her there, the administration had a rule that they have to have a family member visit at least once a week. This is in Tijuana, Mexico.)
So, I guess every situation is different. Do what your heart tells you. Do what you can mentally tolerate. Do what you think is "right". Do what you would want them to do to you. Do what you can do 'without crying'.
I'm sorry. This is tough. There is no one right answer.
My heart goes out to you. It would be wonderful if you could go visit today and recognize your anniversary, but it would be heart wrenching to go and be ignored because he no longer knows you.
If you can, make today about your memories of the good times. Get out to a place the two of you enjoyed visiting, take yourself out for dinner at your favourite restaurant, or prepare a favourite meal at home and set a pretty table. Hold the love you know your husband had for you in your heart.
There is no 'rule' that you must visit him on any particular schedule, do not let anyone guilt you into that idea. Some people go daily, others less often and some not at all. It is not a reflection of their love for their family member.
I also urge you to see an Elder Care Attorney, and the County Office on Aging or whatever they call it where you live. Get some advice on your finances. Our Attorney amended our trust so I wouldn't be in danger of losing the house.
I can not begin to understand how your heart must ache at you dear husband not knowing you, know this though, it is that nasty disease and not the man that you married 56 years ago. I bet if he could, he would hug you and thank you for 56 wonderful years of putting up with and loving him. Do something nice for you today!
Love and hugs to you!
Towards last months of my mom’s life (Lewy body Dementia) she thought I was a specific long deceased Aunt. This Aunt died in the pre-war 1930’s & had stayed with mom’s family in the 1920’s off & on. It occurred to me that perhaps this when Mom was happiest in and I started having conversations with her as if it was that era. Hit & miss but when it was good found out a lot of history & family dynamics. Took yearbooks & photos which she could pour over. Visiting made her happy & recollecting this now makes me happy.
My step dad makes the trip to our house every other day to see mom. I think she knows him inside, every it she can no longer express it on the outside. I feel the same way about her recognition of me.
My sister comes occasionally and my brother not at all any more. It is not that they don't love her... It is just more difficult for them to see her in this state. I think each person has to do what they think it's right. There is no right or wrong way.... We do the best we can and as long as our heart is in the right place, it will all work out.
Follow your heart is the only advice I have.