They go on to add how we should spend every moment with her. That is just not possible. My mother is still with us in her mid 90s and yes, we love her very much. She is in her own home, and well cared for with caregivers and family. I do not want to lose my mother, but the reality of the situation is that we have already lost our Mom. She knows us and interacts, but she is not the mother who raised us. We have already mourned the loss of our mother. I guess it grates so badly because is makes me feel like as long as the body is present, we have our Mom but that is just not true.
You are so correct that the body being present doesn't mean our loved one still resides there.
I was a caregiver. My mom was very sick for many years. I was with her through it all. Some of her illnesses were very hard to witness. She lived in my house and died in my arms. I would have gladly shared my remaining days on earth with her if she could have lived longer.
It is Mother’s Day and many of us have lost our mothers. Those who haven’t will. To walk through the grocery store or mall, or to even check e-mail on Mother’s Day is terribly painful to those of us who have become motherless. I have friends that must stay home on Mother’s Day because they know the tears will be spontaneous and difficult to control.
Enjoy every moment. Don’t wish for your own life to pass more quickly.
I wish I could sit with my mother in the very painful last hour of her life so that I could tell her again how much I love her and how grateful I am for all the sacrifices she made for others.
Somedays I have a hard time accepting that I will never be able to touch her hand, hug her, hear her voice, or talk to her for the rest of my life.
Trying to guilt others for their feelings is crummy.
It's hard to empathize with either side of it unless you've really been in it. Yes, my dad is alive, but damn he really sucks a lot of the time and caused me a great deal of pain. For those who have to watch their parents fall to dementia and Alzheimer's for years and years and see them suffer or be abusive, to do the types of caregiving like changing diapers or dealing with accidents, and constant hospital trips and dealing with the likes of elder care attorneys, Medicaid, facilities, etc....it doesn't seem like one is lucky to still have that physical body present. Like I said, it seems to me personally having been on both sides of this that only those with direct experience in something can truly understand.
But I would never tell someone struggling in caregiving that they should feel lucky or be happy their parent is still alive. That only invalidates the struggles of the caregiver and as someone who's experienced that, I know caregivers need to be validated just as much as the person they're caring for. Just as I would never tell someone who's lost their parent early or tragically to be grateful they never had to be a caregiver for said parent. That would invalidate their grief.
I fixed my friend who said both of these! Every time she said it, I said to her, “Well, she is very lucky to have me!”
Then every time she said, “How is mom?” I said, “I am fine.” She repeated it. I repeated, “I am fine.” She repeated once again and emphasized, “I asked you how your mother is?” I said, “I am fine, thanks for asking!” She looked so confused. I smiled and walked away. Hahaha
YES, sure does.
Having said that, if things don’t change then close that door. I’ve ended friendships with people as a last resort. Took awhile to get to that point but it happens. Unfortunately the woman that I no longer have a relationship with has pushed so many away, even her kids! She tried to manipulate her daughter so much before her wedding that her daughter ended up telling her that she was no longer welcome to be a part of the wedding ceremony.
It took a therapist telling me that it was okay to be angry for me to realize that a range of emotions are normal with being a caregiver. You are right to say that we have to accept what we feel. I personally feel it isn’t healthy to get stuck in anger, anxiety, depression, anything that can hurt us in the long run and we owe it to ourselves to seek help if we find ourselves stuck in a dark place.
Like when people have said to me, “Do you have a belt for those pants?” Because they don’t want to hurt my feelings by saying that I need to eat and have become too thin. They see my pants falling off but they feel funny telling me that I don’t eat enough. It’s true I have never been a large eater and I know that I am underweight but my appetite is nearly zero these days.
Some people are rude rude though and have asked me if I have been sick and is that why I am so thin. I would never ask them why they are so fat?
Educating people is great with people who are capable of hearing it but have you ever tried that with a person who isn’t? Geeeez, a reply like, “They can’t help it. You should be ashamed of how you feel.” Oh my gosh, I have never been a violent person but a comment like that makes you want to smack them! LOL.
It gets really convoluted until someone goes through what you are going through now. You never really want to accept that passing of the baton where you become the parent to your parent. And most of us have parents who don't want that either.
The best summary I had was from one of my friend's dads who said, "Sometimes the Golden Years aren't so golden." AMEN!
My mother is not terrible but I have to say not the mother I would have wished for and not the mother I am. This leaves me feeling sad and guilty.
The relationship is so emotionally complicated. She is currently in AL. Yesterday was annoying because we were taking her to dinner and the restaurant was crowded and behind with their reservations. She kept moving her Walker in the direct line of traffic. I had to say I had spoken to the staff and I was doing my best. Frankly she was driving me nuts. I wanted to leave her with my husband and walk home. I didn't care that it was pouring outside.
She now takes medication but applied Christian Science theories to her life and mine. I abhor that religion. I suffered as a child being denied medication when sick. She is very overweight. I don't care anymore what she eats. It has exhausted me for years. I don't wish for her demise but I wonder how long she will continue to go downhill. She hasn't been healthy for decades.
I had bought her a new bra at her request. She told me it was too padded which it wasn't in the least. I now have to go somewhere else to try to find one to her size and needs. It is not easy these days finding truly old lady bras.
Our reservations were for 6:30. She said how nice it was to go out to dinner at that time implying she eats so early at the AL. She has said this before. It is really a dig.
I always try my best to not bring up the negative aspects of my childhood. She was not really meant to be a mother, having been a serious dancer which one would never know now due to the shape she is in and has been for years.
I could go on and on. She spent years in bed during my childhood. When my parents divorced I completely understood my father's desire for such. I was cooking and cleaning the house by myself at 16. I was an only child. She had a late miscarriage after me and I found letters to her best friend with so little emotion on her part.
She just has always been zany. I just came home last night and felt depressed. Sad for what never was nor can be now. She has has an ischemic stroke. That has made her less zany but it is hard to have a conversation unless it is a subject matter she wants to have.
This is all so complicated. I am in therapy and take antidepressants. Only my immediate family can understand my issues with her. I know I am fortunate to not have her behaving horribly as so many here have to live with. I know I will feel awful once she passes. At times I just don't know how to emotionally help myself as far as she is concerned.
That usually shut them up. 🤐
You are very wise. We all need to follow your advice.
Well . . . when is it my time???? When I lived on the West Coast I was forever running my father to doctors appointments 3 hours away. He passed away 4 year years ago. I moved out to the East Coast so I could enjoy my later years. Now my mom moved out here and she is the most negative person you can meet. Always has been. I cringe when I see her eyes get big, I know something negative is about to come out of her mouth. This is an everyday thing when I visit her. It brings me down and steals my joy.
My father and her retired early and was able to enjoy each other for many years. I have worked full time all my life, raised 2 kids on my own and am now 61 years old.
I am tired. I have another brother who lives far away and my sister is always on the road with her husband, so again it is just me. How can I be so grateful when I feel so ugly when I leave her house. I love her but sometimes I just cant take it. Years ago I wrote her a letter tying to tell her to be a more positive person. I don't think she ever read it.
I am so burned out and still working full time.
You have to do what meets your heart - your mom is there, you’re doing the best for her. Sometimes i just agree with them and move on. I refuse to get into discussions about if i am doing all i can for her. For one thing, not all of our moms were great to us as children. Sometimes they were horrible. So instead of going there and telling all of my angst about a bad mom - I do remember all the positive things she did do and the fact she was faced with many challenges trying to be married and raise a child. I remember she is my mom and i am the only one she can rely on. I don’t want to mistreat her and i have forgiven her. So i just agree i am lucky, that there are challenging days but we are lucky to have each other.
Usually taking this positive approach lets them share how much they miss their mom and then we move on.
If you had a great mom, then know in your heart you are doing all you can and no-one knows what is best for your mom except you.
This is the hardest thing we are doing now and still being part of your family’s life and your independence. I also have started to write my day / her day down. This is helping me see the good and sometimes funny moments and be able to tell my well meaning friends that “yes, I am lucky. God is good and I am blessed to still have my Mom.”
Then I move on to something else.
Nice to know someone else has the same experiences and feelings.
Glad to know I am not the only one.... Sad to say, my "mom" has been gone for quite a while... She is still living, but not the mom I knew.... I had to come to terms with this rather quickly & it was heartbreaking... Mom has been in a nursing home just a little over a year, and she is still not acclimated. Ever time I go, she wants to know why she cannot go home (even though she does not know where home is)... It is very sad & hard to deal with. There is never a nice visit... I always leave upset. She has dementia, is in a wheelchair and cannot stand on her own. Need help with everything.. It got to be too much for me, so we had to look into other options. She blames me for everything, but I know she is safe & cared for. I feel the same when people say "you are lucky", it does not seem that way, because she is not happy (even if she has a good day at activities, she will not remember it.) I just try to be positive and do what I can. You are so correct with the part about having already mourned your mom, same with me....
You never lost your mom until that moment of death occurs.
If someone here says they lost their dementia/Alzheimer’s stricken mother to the disease, then they lose their mom to the disease. End
of story.
Oh yes, pour on the charm in front of others then we look like the bad guys. We know the behind the scenes crap. My husband had a grandma from hell that I helped care for but in front of others she was as sweet as pie!
I have found that most of my stress comes from what is inside me not matching what is outside of me. The better I get at communicating the inside reality to the outside world the more at peace I feel and the better I cope.
My mother couldn’t remember anything so she wrote everything down on post-it notes. (I bought her a huge stack at COSTCO.). She wrote down what she ate for breakfast, when she had her bowel movements (too much of that stuff 🙄), what time she got up what time she went to bed and on and on. It’s agony for the primary caregiver(s) because you are always in trouble and always doing “it” wrong. God bless you because I can relate and even after they are gone it’s difficult to separate who she was and who she became. So sad.
This is not easy.
People say remarks out of ignorance. We have two daughters. Went through years of infertility. So the first daughter we adopted, the second (surprise 7 years later) was biological. They are both our miracles! Both loved the same. People would say to me after we adopted our child how “lucky” she was to have us for parents. I politely told them that we were the lucky ones to be blessed with a beautiful child.
I volunteered with our local auxiliary, served on the board for years. I did outreach work in high schools. I attended countless seminars on adoption. I can tell you with education today, adoptive parents feel as I do, very blessed indeed that birth parents selflessly placed their children to be loved by others because they were not able to do so themselves.
There are many misconceptions about so many things, adoption, caregiving, just tons of things and people mainly through ‘old school’ thinking make ignorant remarks. It’s why I made it a point to volunteer and educate others as much as I could.
I don’t see the point of just whining about something. Make a difference in this world! Do something about it. You won’t regret it. I don’t. I wanted to set an example for my children. They both volunteer in causes that matter to them.
I suppose the bottom line is that some people are able to be educated and by all means take advantage of that opportunity but some people are close minded or do not wish to learn or unable to be educated and then us trying to reach them is totally futile to do so. I personally feel sorry for them. Sure, it may anger us but we cannot afford to allow ourselves to become stressed or sick over it. We as caregivers have enough on our plates.
The top of my list of worst palliative phrases people say to me is, "He seems fine to me". Really brings out the grrrrrr in me. I try to remember that they are speaking solely from their ignorance and that they usually mean well.
its like the posts here where people are venting about how hard it is to be their ailing parents caregiver and how they regret making the decision to take on that roll. There is always that ONE PERSON who has to say how much they loved being being. 24/7 caregiver to their parent, how it’s the best thing they ever did and that the complainers should enjoy it too!! Wrong time, wrong place for that! When people are expressing their frustrations as a caregiver and how burnt out they are, the last thing they need to hear is how much someone else loved it and it’s the best thing they ever did. What they need to hear is that their feeling are valid and that it’s ok to feel the way they do and that they are not alone.
Telling someone who’s mother has advanced dementia and not the person she used to be “at least you still have your mom”, is just heartless to me! It’s ignorant! It’s cruel. My heart really goes out to anyone who has been told that. I can only imagine how hard it is to go through that with your mom or dad, when they are no longer the parent you knew, they can’t take care of themselves and they don’t know who you are. When their quality of life is non-existent. I really can’t understand what kind of person would tell you “at least you still have your mom”. Like you are supposed to be greatful your mother is still alive! I just can’t fathom it. I can’t fathom telling anyone to be thankful their parent is still alive when they are suffering and have no quality of life! If only people would think before they speak....