I miss my mother. She is ninety six (I am 52), and you would think that I would be grown up enough not to need a mother/daughter relationship/ Not so. She began to slip away several years ago then the roles reversed; I became the mother, she the daughter.
It is so lonely sometimes not having a mother to talk things over with. Childrearing, employment, life. I had her for many years and cherish our memories. Although she's not officially gone, she's just not here --- on most days.
My heart goes out to you. I don't think we ever stop needing our mommies, so to speak. I'm very close to my mom, and truthfully I soak in every bit of her mothering possible. No matter how old I get, I think I'll continue to do that.
I'll be thinking about you and hoping you still share some experiences that will turn into memories you'll cherish forever.
I am going through the same thing so I feel for you!! My mom has been going through the nasty mean stage of demensia and it gets harder and harder for me to go see her because I wanted to remember her the way she was and not the way she has become. I feel guilt most of the time and don't know what or which way to turn. Guilty if I don't go see her and cry like a baby after I do see her because she doesn't know who I am and she looks at me with this look of almost hatred or ????
Those of us in your shoes understand how hard this is. There is nothing that can 'fix' this aspect of the disease process. I want to encourage you to make time to connect to with others who can give support & encouragement to you. This online stuff is great and has been such a good thing for me but if you have family or friends close enough to see in person nothing beats a hug in person. You are going to need more emotional support than normal & probably not all from one person. I will keep you in my prayers and am sending a digital hug....did you fell it :-)?
I am so sorry to hear what you are coping with. I am at this stage as well & it is very difficult, I do better some days than others. A week ago I had my first experience with my mother getting mad when I called her 'Mom'. I have been trying to change what I call her but she slips in & out of the present so often I am just as likely to make her mad if I don't call her 'Mom'. I am finding I have to keep a sense of humor about it if at all possible & honestly I can't all the time but I do try. Friends & family are a big help and I hope you have them available to you.
I am at the same point of wishing I had a mom talk to. She does not know who her children are and she has become very mean and nasty to not just us her kids, but to the whole world. That's just not who my mom was. Its hard to watch and its like telling a little child not to be mean to those who are trying to help her. She has no clue, an its certainly not her fault. I believe anonymous up there is my sister and I know she feels about like i do. I don't want to not go visit her, but when I get there my stomach is sick and when I leave my stomach is sick . So I am pretty much sick all the time. So many people have this mean dementia and it certainly gets worse before it gets any better.
Many will have the following: "As the dementia progresses, the mental reality regresses." Thus your mom's reality may be when she was 34 years old (or other). Must communicate at their reality stage. When you discover that age, then try showing a picture of yourself during that time, and state that your daughter (Your name) really loves you, etc. Many times the person with dementia will react in a positive manner. If your mom's reality is a younger age, then she will see you at the age you were. She won't know you at the age you are - may see you as a stranger and threat which could cause outburst of fear, anger and other acts.
Sister, welcome to the awful club. My mom was a horrible person all my life, just mean, nasty, an alcoholic and drug addict. She found total sobriety at the age of 77, we had 8 good years, we got to know and love each other, traveled, visited, cooked, shopped- it was like a dream come true, and then Alzheimers took her. For the past 6 years she has slipped farther and farther, now she basically just stares and mumbles. Aricept and Nemenda gave us back about 4 years, but the end is nearing. No one can understand how much I miss her, not because I needed her, I needed her as a kid and she was gone, but as a friend, a confidant, a road warrior, I could tell her anything and she kept it secret. Knowing who she was and seeing who she is is awful, I know she would hate it. I was cleaning out her stuff and there was this hand written note, it said "pray its not Alzheimer's"-- I cried for days. She was so afraid of that, and then she got it. I see things she would love, like barbecues and political news and juicy gossip in the tabloids and I turn and she's not there. She's physically there but that is all. This is agonzing, I don't wish her dead, but I don't wish her to live like this, I want her back. I lost the little old lady in tennis shoes that most people get, she went from brown haired and feisty to fetal and drooly. It is an endless torture for me and although she doesn't KNOW she's gone, I know how she felt and she would not have wanted to live like this. My prayers are with you.
I love this answer and it is true. If you can find the age they are living in then you may able to connect. It can be like a game. Bring in old pictures and see if you any reaction. If you do, talk to her as tho that is today's reality.
My family brought in digital photo that shows pictures, and hundreds of them , of kids, grandkids, old days, her parents , her brother and sister, just about everything. She has a picture of her 7 daughters on the wall, she will look at it and then she will look at you and ask who you are and i will say you tell me mom who I am. Then she will search again for the right one, and its usually not right. None of the pictures are familiar to her. I think its the meaness that is so shocking and she is combative, and she will hit ( not hard, or slap) not just her kids but other people. Or just scream at you for no reason. If you tell her you feel bad, she always says, Oh i'm just kidding. Its kinda in and out of reality. She was such a good person and kind and its the meaness thats really shocking for everyone. Sometimes I think it may be all the anger she held inside for so many years its all coming out now that she has no inhabitions with her condition. Anything goes with her . If she sees a fat person, she'll shout out , look at the fat woman. very imbarrassing sometimes, gotta love em though.
Thank you so much for your kind words and hug. I appreciate you very, very much.
Your letter reflects my circumstance, very closely. I know exactly how you feel. I am 52, Mom is 83.....she was a great comfort to me in so many ways. Now, I am the Mom and she is the daughter.
I am going back to work, after spending 3 months with her everyday. I am uncomfortable leaving her alone, but she doesn't feel she needs any babysitter! She is okay sometimes, but sometimes I look in her eyes and they are vacant. It hurts like hell, to see her decline like that. I promised her that I would never put her in a home, but......the reality is I need to work and............Even though she is not at that point right now, after the next fall or injury, who knows?
Hearing others having the same feelings helps me to know that I am not going insane, I guess.
you are certainly not going insane, and yet there are days you are insane with the insanity of this disease. It can actually make you crazy and at times my sisters and I have a hard time keeping the sanity of it cause there are many opinions on what is right and what is wrong to do for her. Do we let her sit in the nursing home and not visit cause she doesn't know who wer are anyway or do we take her and then she is confused as to where she is or where shes going. Its a crazy thing that is for sure. If only you could see into their minds and look at how they are seeing the world in their new life here at the end. If only. What is the answer? There is none. Its what you feel is right for you. And try not to feel the guilt. We didn't give her this disease and we should not have to feel guilty for then having it. Many questions to be asked when we stand be fore out maker. I know there are trials in the world that make you stronger and better, but if I got to pick, this is not one of them. Hang in there, hopefully they can go to sleep and that is how they will leave this world.
LeBecky-I have started to pray for that. Please take her soon, before it gets worse. Thank you for your support and I pray you find peace as well.
Its okay to pray for that. It would be so good for them to just go in their sleep and not have to suffer this world anymore. If it were me, thats how I would choose. I could find peace in that. But I don't want my mom to be alone when she goes. I want her to be at someones house, not with strangers who don't know her like we do. At a sisters house, or my house or anywhere that someone is with her. that is what I pray for.
If you could not do something that you had always been able to do, would this frustrate you? The anger may or may not been directed at you. The regression of reality leaves the person as a child with no inhibitions - calling out at people, entering a room with no clothes on, etc. I went through all this with my Dad and now with families going through this. The caregiver in many cases will go down before the patient. If it isn't hurting your loved one, or you or others - let it go for everyones health (I mean such things as not knowing who is in the picture, different colored socks, etc.) Your loved one may seem to be "just there", but she is still very present and struggling to communicate. They sense, feel and know when a back is being turned on them.
Love them in their reality and they will love you back. It is different than what we would like, but it isn't about us. Now before you lay a guilt trip on yourself - I stated it is not about us, but you must take care of yourself - thus it is also about you. The balancing is an adventure of choices!
Its just that my mom had alot of anger held inside from a marriage that was terrible to my father and was bad for her and her children. I just wondered, and I do alot of that, because it interests me how the mind works and everyone has their own anaylsis of whats going on in the persons mind, even the doctors. Yeah , I get frustrated to when I don't remember . and it scares me it is hereditary. I just wondered one day if all the anger that has been held inside is finally coming out in its own way. Not a bad thing if you had lived our life. My father died about a year and a half ago, and his children were the last thing he wanted to be around him. Even though we always tried to be good daughters and my mom lavished on my father and all that, he was and clear to the end an ass. I loved him only because he was the sperm doner to my mom and had all these kids he could have cared less about. She raised us and took his crap for many years and then married two other jerks. She was a good woman and deserved to have a good life and she lived in hell. I don't know which husband was the worse. but I know she always loved my dad. No one except my one sister wanted to take care of him when he got cancer and I was certainly not going to get called names by him anymore so I stayed away and my sister said it was okay , she was doing it for my mom cause my mom would have taken care of him. I took over one night or my sister and the next morning my sister and I were talking and he told us to shut up and quit laughing. I told my sister to go tell him to shut up cause who was taking care of him and he should appreciate us even though we know he didn't. She left and he had a massive stroke with me there by myself and i shook him till he came back to life and he lived for about another day and a half. He never spoke again. and I now have PTSD from watching him die a horrible death in the last two days I was there. He was an ass and I wish to this day I had never gone there and been there alone. I ended up in the hospital two times after having nightmares about this man who was so mean to my mom and his children. I know my mom had so much anger for him . He married a woman who had money and he could do anything while my mom raised us on nothing and not once did he ever say he was sorry. I just think her anger got her at the end and sometime before she got dementia she was very angry and sad about how her life had turned out.
I do feel for you. I put my mother in law to rest on Saturday. She died of respitory distress. We took her into our household with her sister with Dementia. We lost both of them this summer. The Aunt from stroke. It has been a rough summer. I am especially having a hard time with the passing of my mother in law because she became my child as I did everything for her. From April i had the advantage of having hospice help me in the morning. Ethel was in her 'right' mind, she held conversations to the end and asked for my sons before passing. I miss her terribly and the only thing that makes me feel better is looking threw her photo albums to see how happy she was in the past with her spouse, family members. She was one of a kind.. Im lucky to have been a part of her life. I know that she is at rest, no more pain but feel so selfish because I miss her.
Feel your feelings - don't let anyone, including yourself, take those feelings away. They (there will be more) will pass when it is time. I was told all the old little quotes when my mom died - she's in a better place, she's better off, etc. - and "Its time for you to get over it and get on with your life" which didn't help me and my feelings - just added anger and guilt. Again, "FEEL YOUR FEELINGS AND ALLOW YOURSELF TO TRULY FEEL THEM." I have learned to not just think your feelings, but SPEAK them. If you have someone you feel "safe" with to express your feelings - do it. If not, speak them out to yourself.
You made two comments in your reply - everyone wants to express what going on in your mind and hereditary scares you. We are all different, thus each of our minds will be different to a degree, and the hereditary factor for so called Alzheimer's is less than 15 percent. I choose to think in my case that I have an 85 percent chance of not inheriting what my dad was diagnosed with - Alzheimer's.
I will not compare my life with yours and diminish the pain you have felt and still feel. It must hurt and bother you still and I am truly sorry for that. My dad was mentally abusive to my mom, my brothers and me. Anything we did was never good enough, and on and on and on. I will not tell you that I know how you feel, because I don't - only you know those feelings: just like you can't tell me you know how i feel. I can say we should feel and express our feelings without anyone telling us how. No one has the right to tell us how and how long we can feel. Until next time - hang in there.
DEAR WITS END, IT IS A TERRIBLE THING TO WATCH. IT IS HARD TO TAKE CARE OF. IT IS JUST DAMN PLAIN OLD HARD. MY HEART BREAKS FOR YOU. ARE YOU DOING THIS ALONE/? DO YOU HAVE ANY HELP? DO YOU GET ANY RESPITE , LIKE TO JUST GET OUT AND GET AWAY FROM IT FOR A FEW HOURS OR A DAY? WHAT DO YOU GET TO DO FOR YOU? LOTS OF CAREGIVERS GROUPS, LOTS OF HELP FOR A FEW HOURS IF YOU NEED IT. JUST GOTTA FIND THE RIGHT PLACES. THAT HELPS, DOESN'T TAKE AWAY THE CRAPPYNESS OF IT BUT IT HELPS. WRITE AND LET US KNOW OF YOUR SITUATION. IT WILL HELP TO LET IT OUT AND YOU MAY GET SOME IDEAS FOR SOME HELP. YOU DESERVE A BIG HUG CAUSE WE ALL NEED THEM.
Thanks for a caring response. It is something we all need. I am in the process of getting help for routine household chores. my spouse in in a long term facility. I see him regularly and each time it is just as hard. i know he would not want to live like this but it is in God's hands. A quick and painless death would be a blessing, but we cannot choose how we live or die.
If only it could be, that they could go to sleep. The lord should have made a cut off point and that was it. Your time is over you outta here. Not to be. These people should be out enjoying life after working there selves to death for all those years and end up with a disease that they can't even remember there names. You should be enjoying these years , instead you are visiting someone who doesn't even know who you are. Its one of the saddest diseases i have seen. I have worked with these people for many years and its so hard to watch the decline and the sadness in their eyes as they digress . Get yourself some help and go do some things for yourself. Your loved one would want you to do that for yourself. Even if you go out to eat or a movie or just to visit with friends, thats what you need, to keep your mind from exploding from grief. keep writing, it helps also. we love to hear from people , it helps us to.
I'm in the beginning stages of all of this, feeling overwhelmingly sad at times about it all. Momma is 83 (I'm 40) and we live apart. My local to Mom siblings are not a help at this point, so I've had a lot of traveling lately. We are headed to nephrologist and Memory Dr for first appts this week. Mom has slipped back to many years ago, like when she and Daddy first got a divorce. So she carries the constant fear that my 10 year old brother (that would make me 4) have been stolen by our Dad and taken to the farm. I'm having a harder and harder time convincing her that I'm really 40 and that there really aren't any little children at home. She threatens to call the police and I've notified the local Sheriff's dept that we are grown, so she doesn't have little ones at home. This is all so much not like her, it does feel like one of my best friends is gone. (BTW, I've found the fountain of youth.... it's my mom, she continually thinks I'm young!)
Anonymous .... that posted the following partially copied comment (I am going through the same thing so I feel for you!! My mom has been going through the nasty mean stage of demensia and...)
You sound like my sister... but I, on the other hand knew my mother as a true friend and can help her through this time with less emotion. The disease is what it is and I can not change that...although if I could feed her enough Fish, Blueberries and walnuts to change her state of mind I would do it.
Big sisterly hug to you....
I can relate to exactly what you are feeling. I lost my Mother on April 26, 2010 and it was a situation much the same as yours...she was gone but still here. I cherish the final days I spent with her in the end. She was in a Nursing Home as I was unable to take care of her at home. Some days she knew me other days she just sat and stared into space. She almost stopped eating as she had a fear of choking due to strokes from the particular type of dementia she had. I would go twice daily and try to feed her. I think she recoginized me by my touch and the perfume that I wear. Somedays when she was able to sit in her chair I would just lay my head across her chest and she would gently stroke my hair as she did when I was a small girl. Other days I would crawl beside her on her bed and she would gently rub me and stroke my hair. Just being close to her meant more than words ever could. Since she is gone I am having trouble trying to figure out what exactly to do with my time. I miss her more with each passing day and wonder if I will ever reach a point that I will get beyond this. I have two sisters that neither wanted any part of my Mother and her final years. I wonder just how they are feeling now that Mother is gone and they didn't get to see her final smiles, hear her soft whisper or mouthing I love you, the gentle strokes from her hands that held mine as a child and watched me grow up and made the person that I am today and most of all to see that sparkle in her eyes when I would appear.
My message to you is to live every day like there will be no tomorrow. Be thankful for all the little things they still do. And give them all your love unconditionally.
How lucky you were to be able to be with your mom at the end. My mom finally passed in November of 2009. She was having mini strokes and was not eating or drinking at all. It was just a matter of time. She was still mean and nasty right till the end. My uncle , her brother gave her a blessing to release her from this life and be at peace to go to the next life. It was only a day after that she passed. She was in a nursing home and had been running naked after taking her clothes off and going to the bathroom in the dining room. She just forgot everything. It was so hard to watch. My sister Pat stayed with her the night she died, but we all went home and knew we would get a call in the night. We did, and it was at 5 in the morning that she passed. My daughter and i got up and we all went over. It was nice to see her at peace. I stayed with her until the mortuary guy came and we both wrapped her and then he let me spend some time with her alone. I am crying now just thinking about it. Finally at peace after such a battle. She looked twenty years younger when they fixed her up and it was a nice funeral. I have been in and out of depression since then. I feel like an orphan sometimes. I go to her grave and just sob. I miss her every day. Your sisters should feel sad about not being part of her last days. They are not fun sometimes , but I guarantee if it was one of them, they would want their children with them at the last. Your message of live every day like there is no tomorrow is very true. We are only here for a moment. Big Hug to you.
You need some time for yourself. Maybe you can get respite care for her;tell her you thought she needed company. Also can you get her into adult day care? Good luck, My mom had the disease and it is difficult see her like that. I just finished a course to work i a retirement/assisted living facility . Good luck and remember there are lots of people out there to support you. There are support groups also.
Do not argue with anyone with dementia;they may repeat the same thing several times in a few minutes, ask the same questions over and over again. If they are widowed and ask where their loved one is, tell them they are working, especially at night. They sometimes are afraid of getting into the shower or tub, because they are not sure what to expect. I worked with some people with Alzheimers and really enjoyed it. Good luck to you all. Cindy
You need some time for yourself.;Get your hair done and get out once in awhile. Also see abut a support group. I have cared for people with cancer and dementia and I wish you all the luck in the world. Do you have any other family members to support you?
I went through something similar with my father almost 20 years ago. Dementia is a very cruel disease, not only affecting the individual but the family structure as well. I am trying to respond in a "non cliche'" way; take each day that is given you; try and remember the good times as this often will ease the pain. The pain never quite goes away, but in my case there was somehow acceptance. It seems like you are very devoted to your mom which is fantastic, but it is important for you to have alittle "me time", even for an hour; take a walk, read a book, take a nap, etc. You need to stay strong mentally and physically otherwise you are just going to cave in (don't let that happen). Have faith, there are people who love and support you. I am sending you a hug; I've been there and know how it, to put it bluntly, sucks.... Ellen
I can understand how you feel.I am 36,an only daughter and I lost my father 3 years back.My mother is 73,and lives withme, my husband and kids as she has no other family.She is a heart patient and not very strong emotionally.So,when ever I have a problem or a dispute with my family I can not share it with her,rather I have to be her protector and always show her the rosy side of things.But that makes me very lonely.
I know what yor going thru. My husband has been in the nursing,home for 2 years now with the same thing. My heart goes out to you. He cant talk,walk feed himself and he is incontant. He just hardley knows me.No one can know how hard that is less they walked in our shoes. I get by with the grace of god and one day at a time.My hardest part is walking out of the nursing home leaving him.
dear hurtfull, It is the hardest thing to leave the nursing home. it is also the hardest thing to go to the place. I my self would put off going and then when i got there i would put off leaving cause i would feel guilty. It was crying when i went and crying when i left. There is no good thing about this disease. No, no one knows what its like to go through it until they have to. When someone forgets who you are and you have to keep telling them, i am one of your daughters. which one. Becky, the middle one. I feel like an orphan. You always need a mom. That feeling of closeness never goes away. It may get a little less hurtfull, but it is always there. I have days when i am fine and don;'t think alot about it. then i have a day or to where the flood gates open and I just miss her. Even to go lay on the bed and not even talk. That would be fine for me. Enjoy the good and the bad cause hopefully it won;'t last to much longer. You hope it won;'t and when it does you wished you had not hoped for it to end. hugs and pray for a quick end to their suffering.
Dear shes not gone. I to have my husband in a nursing home 2 years now. He isin his fianally stage of altimers dementa and parkinsons deiese . It is so hard on me to. He has now went to puree foods can no longer chew his food. He sleeps most of the time. and sleeps so deep you cant wake him up. Iam hoping that if this is gods plan that is how it will end for him. The whole 4 hours i visted him he never once woke up. that was hard to leave him. Igo swimming at the ymca in streator il in a open swim seniors from 10am till 11am that helps alot try to keep busy and read my bible. hope you can find a good friend to help you out. thanks for writing. been there.
I have been reading all of your posts. I am crying now as I read them. I know how you all feel. I just visited my mother, who has vascular dementia, she's physically here but gone in every other way. To realize that she's never going to be the person she was before is heartbreaking. Being an only child, everything seems to fall on me. I am going to bring her home and try to take care of her. This may be my last Christmas with her, who can say. I pray for all of you, even as my heart slowly breaks. Thanks for being there.
