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.
"....Look at it this way, you can STILL hold her hand. When she's gone, you CANNOT hold her hand.....A person that gave you life and this is the hand you were dealt. It's no ones fault. Hold your Mom's hand while you still can..."
I'll go hold her hand, now.
I'm "cursed" with the hard work, anxiety, and stress of being the sole caregiver 24/7. I ache when I realize how much my Mom has lost -- her eyesight and her ability to read and enjoy t.v., her memory, her ability to drive anywhere she wants to go, her ability to go shopping, her own home, her comprehension, and her understanding. She's everything, except for me. It's heartbreaking to see one's parent disintegrate over the years. This is not what I call a "blessing." At 72, I'm scared of actually being alone -- for the first time in my life. My Mom and I were best of friends. But it's time. I'm ready.
Your feelings are understandable. It is hard. Caring for an elderly parent that is losing control over their mind or body or both is very hard. I don't think people mean any harm but it is frustrating to a daughter or son that is overwhelmed with caregiving. No one knows till they walk in someone else's shoes.
Please know we are with you. Thinking of you.
And no, I wouldn't give anything to have her back again, not as she was at the end - that would just be too cruel for both of us.
Back in the day, people tended to die quickly from "old age." Now? People can live on into their 100s ... but ... all too often, they exist in horrific shape, physically and mentally. Destructive personalities tend to become even more so. And good people may transform into something intolerable, through no fault of their own.
In such cases, caregivers can love and cherish their hearts out -- but the outcome is still unhealthy for both parent and adult children. For all concerned, separation is necessary.
Guilt trips, especially from outsiders who have never lived with abuse? Not only unnecessary, but unnecessarily cruel.
Sorry your situation is so hard but everyone has their own situation and we all have a right to feel as we do. I realize it’s tough for everyone as a caregiver. I’ve been at it for 14 years. I do think ALZ would be the worst. My mom suffers with Parkinson’s disease and it’s rough but ALZ in my opinion from what I have seen from others is much tougher to emotionally deal with. Again, I wish you did not have this issue in your life.
That doesn’t mean that you have to agree but maybe next time bypass the question instead of making a point to tell her that her question is irritating. Kind of rude, don’t you think? Would you like someone to call your question irritating?
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....
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.
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.
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.
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.
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!
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.
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 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.
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 are very wise. We all need to follow your advice.