Today has been the worst day....

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Today has been the absolute worst day. It is the only day that I have really felt up against it. I just put mom to bed, but there is no assurance she will stay there.

I hate the sound of her voice today, I hate the way she stammers and the gait in her walk. I hate that she has no clue really who I am, but yet remembers she has children and their names. I hate how she talked about each one of us today not even realizing that I am her oldest daughter. I stopped reminding her of that two weeks ago. For a very long time I could bring her back. Two weeks ago when I said "I am your daughter Sharon", and she responded "No your not", I knew that bringing her around was gone and so I no longer argue the point, I just go with the flow. I hate the fact that she states all day long that none of her children come around, even while I stay with her 24/7 in her home, and the other siblings stop in everyday. I hated today that she ate continually because she could not remember eating. I hate that the "we will eat soon" did not work today and she went through the fridge and cabinets on her own (which is new) and ate so many meals today I have lost count. I hate that she sees things that are not there and it scares her. I hate that the meds do not work. I hate to see the fear in her eyes of people and animals that are not there.....I hate that she has to live like that. I hate that she forgets she needs the walker, and is disturbed beyond belief when I bring her the walker. I hate how she hates the fact that I must be there at her side all day long. I hate that none of our regular activities worked today. I hate how she threw the puzzles across the room, broke a glass, swears like nobody I have ever met, who never uttered a cuss word in my 50 years of life prior to this hateful disease. I hated when I called the dr today and he recommended a nursing home. She does not yet need a nursing home, it was just a bad day. WHY is there not a good mediation to combat hallucinations? If there is, why has he not recommended it? I hate Alzheimer's with every fiber of my being. I hate that she is no longer the mother I knew, and I feel bad today for hating the fact she is still her suffering with this.

Thank you for listening, it has been a rough day. We are more fortunate than most, as my mom was diagnosed in 2004 and lived a happy life in her own home with limited daily assistance for many years. Her disease progressed very slowly, to the point we thought the diagnosis was incorrect. This past August she began the progression and it has been a horrible few months. I moved in her home because she is much more comfortable in hers, it works better and my children are grown. The problem is that my husband is staying in our home because him staying the night brings on more hallucinations and extreme anxiety, so her and I at night works well. I did tell my sister tonight that today was a bad day and she will be her for the weekend. I love my mom, and I will keep her with me until I can no longer handle her. Hopefully, tomorrow will be better.

Thank you for letting me vent.

14 Comments

I bet I can make you feel a bit better, possibly? I finally let a similar vent out after keeping it in for 3 years and doing everything, Mom's care, no need to go through that list with you ,all while cleaning her house that was filled with about 10 family's worth of stuff as she was with me and undoing everything I did, and wandering off as well, all while working a full time job that Mom came with me for 20 hours with me because I was Trying to stretch out the money for care because my sister refused to help with anything, ""WITHOUT GETTING PAID"" , endless calls to handle finances and accounts, details, Medicaid application which was like another full time job.
My sister said "you wanted this!" "You should be Thanking Me!"
I got mom in a NH a great one close to home and my sister says
"well I didn't agree to this" LIKE as if I had a choice!!!!!
Then after I had to listen to my father (divorced from Mom for 30 years) requesting my sister wanting to sell the house and how it is hurting my brother who is disabled, that they could care less about unless it makes a problem for them,
TO THEN... tell me to..... STOP BEING BITTER!!!!
The only person not complaining and taking action and not worried about inheritance or loss of my time, my energy and my life my health, my future at all ..... AND I AM THE BITTER ONE?????
OH YES and when Mom was diagnosed I was told "she will be dead in 2 years anyway!!!!!"
All I can say is I am glad I'm not them!!!!! Mom is doing well and I am very proud of myself.
I hope tomorrow is a better day for you all.

I join you in hating dementia passionately!!

Your mother is evidently in her own mind living in the past when she was a much younger woman. Of course she can't have a daughter as old as you! And those other people who come and visit are way too old to be her children, too (if she even remembers that anyone came to visit). So she is miserable because her children don't even visit her and you all are miserable because she doesn't recognize you. What a cruel, cruel disease, for the person who has it and the people who love her. Perhaps you'll have to settle for being "that wonderful kind woman who takes good care of me" when you can't be her daughter.

That sounds like a sad situation with your husband.

It is possible -- not a certainty, but something to give serious consideration to -- that the time has come to be "that wonderful kind woman who visits daily in the memory care unit and brings treats and make me smile."

I'd like to suggest a book, if you are the reading type. "Loving Someone Who Has Dementia" by a therapist who really gets how cruel this disease is to the caregivers and others who love the patient, Pauline Boss.

My husband's dementia progressed very slowly and he was in mild stages for several years, too. When he declined at the end that part went fairly fast. Slow or fast, dementia is a hideous disease!
Oh, one other thought. I wonder if Mother would like getting mail from her children. That would be a tangible reminder that her children haven't forgotten her and are thinking of her. Also I understand that many dementia patients can relate better to their children over the phone, where they are not seeing the age of the speaker. Couldn't hurt to try, right?
sharonmit, Alzheimer's is a particularly hateful disease. Thank you for writing your feelings. I believe it is how most people feel as they go through the long days. It is so frustrating not to really be able to do anything other than put a patch here and there to make things hold together a little longer. What I hope for you is that tomorrow is a better day. And that Sunday is even easier. And I hope your mother stays in bed all night so you can get a restful night sleep. Bless you for being a daughter that goes beyond the call of duty. I know that you are tired. I hope that you can find some peace soon.
Thank you all for your comments. You have made me feel better. It is so wonderful to know there are others like us out there.
Your feelings are very justified. It is so heart breaking to deal with, calming their fears, finding medications that work, dr.s that will listen to your concerns, not getting enough sleep, no social life, redirecting the loved one to another subject and on and on it goes. I want to bring to your attention, only because you don't say what mom's dr. specializes in. Is he/she a PCP? If so, I suggest you seek out a geriatrician who specializes in elderly issues. By doing so, they may have more knowledge of medication combo's to try. My heart goes out to you as I truly understand just as the others who have posted. It is a heart breaking disease. You are a wonderful daughter for doing what you are doing and your husband is wonderful in understanding. I hope tomorrow is a better day and that you get to sleep tonight. You have said things so well. Hugs to you and your family!!
Sharonmit....It's a very frustrating disease. Everything you just said I have all said in my own head. My mom was the sweetest, kindest, more caring woman until she got Dementia. I know....feeling the pain from every stab of her hurtful words. She was my best friend and now she's my worst enemy. What you are feeling is totally justified. When ever you feel the need to cry, scream, vent away. We all know what you are feeling. You have come to the right place. Listen to the stories and add to them your own. This is the best medicine a caregiver could ever have. The love you will feel from all of these wonderful souls will fill you up. I'm so sorry that you have to take this journey with dementia. It's a journey that I walked but my journey ended January 9th this year. My momma is finally at peace. I will pray for you tonight. God Bless you...you are a wonderful daughter for doing this.
I know the feelings of hating dementia. This is the saddest disease and it makes me cry. My mom has started putting two of everything on and has difficulty making sense when she talks. She can't focus on tv, or read or really do anything to occupy her time. She has lived with me for a year now, and she won't let me out of her sight. I have to sleep with her every night. I miss my own bed with my sweet husband. Some times I feel trapped and Im not always as kind as I should be. Its not her fault that she has this ugly disease. Its so sad to have great health but your mind is gone. She doesn't remember my dad her husband of 45 years. She mostly talks of her mom and dad and the time before her marriage to my dad. She thinks we are the same age and gets mad if I tell her the age she is. She is like a little child and seems so lost. Our dog has taken a liking to her and wants to be with her. That does make her feel special and needed. They both require attention. I hope that they can find some effective treatments. I don't know anyone who has dementia or is caring for someone, so this site is so comforting. I feel so alone in this fight with dementia, but I know that some of you caregivers have it worse then I do. Just knowing that we are all in this together gets me through another day.
sharonmit, I'm crying like a baby after reading your post. It brought back memories of my precious dad who died from Alz. Yes, it is the cruelest of diseases. My heart goes out to you and the other caregivers dealing with this disease. I pray every day for a cure.
Alzheimer's and dementia are horrible diseases and no one should have to endure them. It is horrible to watch someone you love die from this and become someone that under normal conditions they would not be or even like to be.

My mom right now is in a very demanding and I want it done now and my way. This drives my husband crazy and I just remind him that she doesn't realize how she is being, so we have to take that into consideration.

Just remember this is a good group of people we are all caring and loving some one. We are here to listen and support each other through our journies, along with praying they find a cure.

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