Today has been the worst day....

Oh my dear Sharon..I feel for you and understand the pain and horrible days u go thru. I have been caring for my mom for the last eight years...and she has lived with me for six of them. My mom was also my best friend, so independant ( my dad died when she was only 57) She was a wonderful mother, grandmother, had many friends..etc. Then when she turned 80 I noticed she was forgetting things..but I just brushed it off as ..Oh she is 80,,thats why..but when I started noticing unpaid bills on the table..the house unkept..her hair not done..etc I became concerned. Then as time went on she was gaining weight..only eating sweets..never got dressed..and stayed in bed almost all day I was afraid. Tried to get my sister to go over there more..she only lived 5 minutes away...I was 45 minutes away..well as time went on I couldnt hold done a full time job...run to her house everyday..I just decided to move her into my house. It was good at first because she was still mobile..would help a little..and was still able to manage getting dressed, showering, etc. My sister is older than me but just doesnt want to recognize how bad she was getting and needless to say was not much of a help unless I instucted her what to do. As years went by..her decline seemed to be slow..it was just so hard when she constantly repeated..and repeated.and repeated..I wore myself out explaining things to her,,then my husband said to me..why do u do that..just agree and let it go..Its a constant learning process..and I had a very hard time excepting her disease,,,,I always found myself correcting her..for YEARS...drove myself crazy..angry at her..at myself for getting angry..then I would feel like I was in the twilight zone when she had her hallucinations...out of the blue we would be watching tv..and she would say..Oh,,I need to go and drive to get your dad,,make supper then go to the train station. and she would repeat..that over and over...I would feel all tingly from fear.....HEr constant looking for her purse..her keys...she would get up in the middle of the night flick on our bedroom lights and say..oh..I didnt know u were sleeping over..Then she started forgetting how to get dressed..where the bathroom was..had toput her into depends,, started having numerous bowel accidents..would take them off herself and get the feces all over the bathroom..I mean not only on herself..but on the walls..floors ..toweels..curtains...I was livid...and angry...then last summer she couldnt walk with her cane by herself anymore..so I got a walker....then she couldnt even walk with the walker,,,so I started walking backwards with her as she pushed ...and would get her around that way....now she can barely walk with the walker because her legs collaspe so I got her a transport chair and the geri belt to help guide her. She really cant do anything herself anymore...the only thing I can say is a blessing is she no longer can get out of bed at night so she stayes in the same position I put her in all night till the morning...I feel bad for her because she is SO stiff when she gets up in the morn..I have to help her up because lately she cannot even sit up when she gets up..I find myself repeatedly telling her that she can do it..and at times she can..but mostly she cant..it makes me so angry...and somwtime Im not proud to say I yell at her to get up..but I know its me wanting so desperatly to NOT be this way...I have been becoming very spiritual ,,and trying to meditate and aske my angles to guide and help me..because I know I am human..I am not perfect..and I feel guilty when I loose patience...but now I am realizing that i MUST accept the way she is..and even tho she is not right mentally..she does feel my emotions..if I am upset..I notice she gets even more confused..and crys..and now she is so afraid of everthing..she screams..so I try to calm myself..and encourage her..every step she takes...I compliment her..every time she lets me center her to sit in a chair I tell her she is doing soo good...and things just seem to go smoother..and I feel better about myself...therefore she also does. It has been a long journey and I still have terrible days..or even if it starts out being bad..I try to walk away..and center myself..it is a constant battle of emotions with me....and it is a learnig experience everyday...In the morning..before work I have to change her depends because she is soaking wet from not getting up all night..sometimes I dred going into her room..because it is such a job just getting her up..and getting her to the bathroom wich is only 20 steps away.It takes me 20 minutes sometimes just to get her to the bathroom//get her on the toilet..change her depends..get her back up n in the bed. I finally got a caregiver who comes in later in the morning and she showers and feeds her..etc till I get home from work. My son use to come and sit with her..but he cant change his grammas depends..it was just getting to hard for him to handle. So all I can say..is each caregiver has a hell of a job to do with this awful disease. You have to keep experimenting with what works best for your situation. I keep changing my game plan all the time because there are always challanges that arise. I didnt want to get caregiver help/..for the longest time,..and now Im like WHAT THE HECK WAS I THINKING..Im only human..I can only do so much..and I turned 60 this year..so I knew I had to start caring for myself and getting help or I would be no help at all. I could go on and on because there is soo much..and I know I left so much out..but sometimes..like you..you need to just vent..especially to people who understand what u r going thru. God Bless you..you are a wonderful person.

Sharonmit: Yep, I hated it too. Hate the disease not the affected one. I just lost my mom Jan 1st. One of the only things that saved me was reading up on the disease. My mom, along with Mzdaizy's mom suffered from Lewy Body Dementia. I had never heard of it until October 2012. That's when mom's hallucenations started and didn't stop! Reading helped me understand what was happening to my sweet mom's mind. I came to understand what to expect in the future months. As hard as it was, I was actually blessed, because mom passed away exactly three months to the day I had to have her taken to the hospital. She had to be put in a NH on Oct. 3, and it broke my heart. With Lewy Body they go back and forth, the first time she "snapped out of it" I had so much hope that she was all better and I could take her home. That's when I was encouraged to do the research..this was only a temporary thing. As the months went by, her better days decreased. Thankfully the days before she lost consciousness she was having good mental days...at least she knew us and was able to get visits by those of us who loved her. I miss her so much, and I can't help but think of the horrible effects that lousy disease had on my poor mom, but then I have to stop, and remember who and how she was prior to this disease. That's the mom I'm trying to remember...that's the mom I'll never forget, my mom...my beautiful, loving mom. This is the place to come, to vent and to be encouraged. Just remember that "creep" that's destroying your mom's brain, is just that, a creep..it's.not your mom. She's just it's victim. Take care of yourself and just continue to give your mom the love you have for her in your heart. You won't regret it when she's gone, believe me.

Sharon, I understand completely! I had to leave my job 5 years ago to take care of mom full time. She has PD and dementia. we are at the point where she can't really do anything for herself and has been in a wheelchair for about a year and a half. we just got a high tech one that reclines etc. in October and it is a lifesaver! The right words won't come to her anymore and she doesn't recognize her 7 children, including me who has her all the time. My 6 sibs are nor recognized due to the fact that they rarely visit! I get no voluntary help from them, but if I call in an emergency, someone will come. My husband lost his job 2 years ago at the age of 63 and was able to collect unemployment until last summer, then he had to start Social Security just before he turned 64. I won't be 62 until August, so we also have the added financial burdens.
The full moon is Monday and I can see Mom is agitated already! Sometimes I just want to run away from home or bang my head against the wall, but I get up the next morning and do it all again!
I am lucky to have an adult day care a few streets over from here and Mom is now there 4 days a week from 9-3. It's a challenge getting her there every day, but she gets out with others and they are very good to her. Do you have any services like that in your area? Maybe contact your local senior center and see if they could help you.
My mom is a handful like yours and the wheelchair is her only saving grace. She was OCD all her life and it is worse now than ever, so she is constantly distracted from one second to the next. Just getting her to the bathroom is exhausting as she will grab at anything in her path. Once on the toilet, you have to keep a hand on her forehead or shoulder as she will lean over for something she sees on the floor, or she will try to stand almost every other second. It's mind boggling how much energy she expends in the course of an hour!
I know there are all kinds of warnings about Seroquel, but Mom gets 2 low dose at bedtime and she sleeps most of the night. Nothing else worked and she would get no rest during the day. With this med she wakes up rested and happy. I will say though, that she cannot function on it during the day. It makes her too groggy and confused. It sounds like you may need to change or adjust your mom's meds. definitely see a geriatric doctor or neurologist as they have more expertise in this area. Unfortunately it could take months to find the right combination that works for her. That happened with Mom, but she has been taking the same combo for 2 years now and it still works for her.
I also recently cut back on her sugar intake and she is more clear headed than she has been in a long time. Too much sugar is bad for dementia and bacteria loves to feed on sugar, so UTIs are more prevalent with high sugar intake.
I sure hope you have a much better day today!

There would be something seriously wrong with you if you didn't hate dementia.

That said, some people are helped at least a little by medication and/or treating minor infections, or trying some supplements or foods with MCTs (e.g. coconut that has been mentioned on other posts) or mannose (cranberry or apple juice, a few studies show it improves mood a little) or whatever agrees best with a person's individual biochemistry. The idea of getting to a geriatic doc is not a bad one at all.

Dementia and all the other "normal" losses of aging are sad things...coming to grips with them should include learning not to take them personally, even though it seems awfully personal when your own mom or spouse doesn't remember who you are... I sometimes compared my experience with my parents to squeezing out the last drops of lemonade from a pretty dry bunch of lemon. You are absolutely not alone, you have many sisters and brothers on this most unwanted but increasingly common journey.

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.

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.

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....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.

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!!

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.

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.

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?

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!

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.