Dementia with Cruelty
Hi everyone. I havent posted in quite a few days. Ive been falling deeper into depression as it neared my 32nd birthday, which was yesterday.
For those that dont know, I give 24/7 care to my mother with dementia. Ive been doing this off and on for about 8 years, this time longterm.
I think the lack of sleep is getting to me, honestly. I moved in with her, in a 1 bedroom apt. I sleep on the couch. Mom has no consideration for that and I hardly sleep because of that and the lack of comfort on the couch. Thats in between not being able to let go of stress and relax.
Ive become increasingly depressed since my mother told me I was just her maid. This was about a week? 2 weeks ago, I think? Im also her cook, accountant, gofer, nurse, bath attendant, item finder and her Ms. Fix It.
2 days ago, she had an accident and didnt tell me. Instead, she took the dirty diaper through the apt and dropped crap everywhere. She said she would clean it up. I let her try and didnt say a word. She placed a dirty rag over the spots and left them there. At this point its ..hmmm.. She started to pick it up and it got smeared. I asked her to just back away and I would do it. She got mad and proceeded to run her wheel chair over it, pushing it into the carpet. It was all over her chair. EVERYTHING. I sat on the floor scrubbing all the spots from the kitchen to the bedroom. I kept asking why she would do such a thing, tears pouring down my face. She asked why should do anything when I have to. I told her thats cruelest thing anyone has ever said to me. Im sitting here scrubbing her BLEEP out of the carpet, but Im the maid right?
Its been a constant battle with her going to Adult Day Care. It turns out she has been hanging up on the staff there and wont let me talk to them. Well we finally got a hold of each other and set up a time. Her doctor encouraged her to go and she agreed!
My brother came over for dinner tonight. Her accountant called and mom made an appointment for tomorrow. Same time as the day care. When i mentioned it, she screamed she wasnt going. When I said ...yes you are... my brother yelled at me ...youre to feed her and give her her pills. Thats it. Its her life, if she doesnt want to go, she doesnt have to.....Its my life too, isnt it? He doesnt know. He has no earthly clue what this is like. But, with those words to me, theres no way I can get her to go now. No chance.
Im sitting here typing and she came over and said....Im sorry about dinner.... I started crying and said she didnt realize what I go through. She said....what are you talking about? I said Im sorry thinking you were going to make me some soup instead of your birthday dinner..... I think I blew a gasket. I started laughing and crying hysterically. Told her ......here I thought you were apologizing for the way I was treated....... She had no clue what I was talking about.
Now, I feel just worse.
I am so proud of you. Words just aren't enough. The courage it takes to look at ourselves honestly, and own our part in things has a way of setting us free. I am happy to hear that at least for now, things have settled down to a mild roar. Again, I am very, very proud of you. Keep up the good work. God bless you on this journey.......
Another thing I thought I'd bring up here--it's very depressing, but ..well, what isn't in dealing with all this? Last year, things were looking bleak physically for my father re: his kidney function and it just suddenly hit me...."I'm fully responsible for his funeral!". I went to the funeral home that handled my Mother's final arrangements and I pre-planned a funeral. It was one of the (if not THE) hardest things I've ever had to do. I'm glad I did it though, I know when the time comes I'm going to be a mess and it's one less (one less MAJOR) thing to worry about. I was thinking, those of you with difficult siblings, maybe these things should be discussed before it happens, and it's one more thing for everyone to disagree on i.e., what type of casket, (or cremation) services. etc. Again, sorry to be a downer, but it takes the load off to get it all arranged beforehand.
Dare
shes decided she isnt going back to the day care.. she doesnt feel comfortable and she just isnt happy.. we'll think of something different then =)
Jerome.. thanks for the advice.. my brother and i were already thinking of taking up the rest of the carpet because she has shredded it with the power chair.. how shes done it i dont know.. but we also dont want to do it because it is so slippery and she wears bandages on both legs and has a hard time standing on the bare floor.. if you havent read a previous post of mine somewhere else, she picks her wounds and puts them in her mouth(thats being dealt with nicely)... im going to start to tear it up for good once we get a little money for a bed for me and some area rugs around crucial areas...
again.. i dont take anything anyone says as mean... i appreciate every word and the time you all take to reply and be there for me... thanks again...
Sorry if you thought I was being mean,I was not. You have to protect yourself.This will cause health problems. It gave me high bp, never took any meds now I take one to keep bp down. I have gained about 65 pounds due to not being able to go outside my home to exerice. Somethings give and my health was it. We do think of ourselves last not good... Sweetie we all ask why and no one has been anything but helpful on this web site. Carol has been very helpful.If no one has POA over your mother you need to do so for her as well as yourself. If you do not like the Doc find another one. If your father was a war time vet your mother is allowed money for in home care or center care . This is one of those things the V.A. does not inform you of . You have to ask for this.In the Federal Benefits for veterans and Dependents Chapter 11 . This will give you an idea of whats out there. You can get this book from any V.A. Center. Just a few thoughts for you to look into. Get back to us and let us know how you are. We are here for you.
Bennie
Everyone who posts does so in an effort to help, and like Linda m and Benny, (not to single anyone out) make points that need to be addressed so there can be forward progress. Most people want to die at home in their sleep. Was that your mother's wish? Was there a will? In an effort to accommodate their wishes we as caregivers, are swept into what seems like a river with a strong current and are trying to negotiate the current which takes form as reacting to our loved one, family input, social mores, the health care system, our own feelings, and reaction to that current whether it is action or our thoughts. And try to live our lives. The learning curve is different for each of us, and is part of the process. If you had asked me if I could be a caregiver when I started I would have stated 'not interested'. Yet when my dad became ill from a stroke and the resulting brain surgeries, I decided to help my mother because I was the only one of three siblings who was flexible enough at the time to do so. I was single, a remodeling contractor, and 36yrs old, in 1990.
Seven years later, (on the day the doctors pronounced him fit to go into surgery to have a steel plate to cover the hole in his skull), was the day he fell, hit his head and died 14 hrs later. That same year my mother was diagnosed with Alzheimer's and my journey has continued. It took two years to clean up their financial affairs with no will, insurance or help. Fortunately he was retired military so the health costs in terms of dollars were less. My brother stated up front he could not help (he has Rheumatoid Arthritis). My sister said she would help later on when I could no longer do the task. (She died two years ago.)
I went for 18 months without REM sleep so I know what you are going through.
We did not know mom was suffering from depression and high anxiety until she got Alzheimer’s. Once she got those meds she was much better to work with. Some meds worked better than others. Take notes of your mom’s behavior so you can better explain to the doctor her behavior. She may have additional issues to address. It also helps to take notes of what you do so you can refer to them 6 months later and see what has changed for the better, or what needs to be changed. If she is messing with the stove or oven, cut the power off at the circuit breaker panel. As soon as is realistic, tear out that carpet. (Assuming wall to wall) Smooth floors are easier to clean and do not hold as much infectious material. You must battle against infection.
You have to stay healthy and protect your immune system. Go to your doctor and get a check-up. Spend an hour with an Elder law attorney, and listen to what he suggests. As rough as it is to hear what your mother sometimes says, she is still fighting what has overtaken her and is alive. When she can no longer respond verbally to you, you may miss it. When I am angry it is I who chooses to be that way.
I share this with you in the spirit that what hand you are dealt, God gives you the capacity to bear. As stated earlier you have the ability to choose how you will act/react to what comes at you. Learn to ask for help from your county Government in the elder care area.
One bite at a time. There is much more we all could share.
Forgive me if this is long, this is my first blog share, about what has happened to me.
Bennie
i did buy the book =)
I am concerned that you go out at 1:30 am to get your mom a hot dog. In many ways our elders are like children. They need boundaries. They need to see we have limits. And we need to set limits for them. What is the worst that will happen if you tell your mother "no" sometimes?
In my own personal experience , we all do things because we get a pay-off. Sometimes it is praise for a job well done, or we are told things by others that make us feel bad about ourselves. And either way we get to be right. When we are with someone who is ill and truly can not help their behavior,then we have to be a grownup and suck it up and do what needs to be done. If we are with someone who is simply being mean and ugly because they can, well, then we teach them how to treat us. Every time you allow her to make you insane, your actions are giving her permission to do it again and again.
My dad was selfish, self-centered, full of self-pity, and could get very ugly when he did not get his way.No matter how patient I was, no matter what I said, he was who he was. So I learned to walk away. When I saw his behavior starting to escalate, I would go outside, walk around, pray, talk to myself, talk to the birds if I had to. Him setting in a wet diaper for another few minutes was not going to kill him. Me staying in the situation and not making a stand for myself was going to get someone killed.(not literally!)
Did I do everything perfectly? Of course not. There were times when I was not paying attention to when things were starting to go out in left field and I would get caught up in the game. It was a crazy dance that the music would never stop unless I unplugged.
I hope some of this helped. The bottom line is, you may have to make some changes or nothing changes. You are in charge of how crazy she makes you, how hurt your feelings get.
My question is, the book you saw the passage in, why didn"t you buy it?
Take what you need here and leave the rest. We are all good people who do the best we can. But you have choices too. People can not drive me to the wall when I am driving. God Bless
And I admit I do have a temper. Which isn't good to start with, but when I explode, I clean. My moms already torn the doors down with the power chair =).
For todays update, my mom pushed the director of the day care away from her and yelled. I told her that if she seriously does not want to do this, then we need to make changes, but that doesn't give her the right to treat people that way. She said all she wants to do is die. I told her not on my time. There is so much more she can still do if she just gave HERSELF the chance. It will make it hard for me not getting those days, but what can I do? If she truly doesn't like it there. I'm not going to force her.
Im still upset with my brother.. I can't lie.. I told mommy on him.. I knew what she had told him was a lie. She said I treated her like a dog and didn't do anything for her. I swear steam came from my ears. So earlier, my brother had called and told me i'm to leave her alone. Give her what she wants or get the hell out if I won't do it. It's why I was so upset earlier and didn't want to talk about it. How DARE he????? I mean.. what kind of person would say such a thing? Get out? Where am i to go? I have nothing and no one. I have ruined my life by coming here. I don't do anything? I told him about the carpet. Who's the dog? Who is changing her sheets at 3am when she's wet the bed or has a bad dream or starts to wander around at night? Who makes sure she has EVERYTHING she wants to eat and snack on no matter what time it is. Who runs to 7-11 in icey conditions at 1am to get her a hot dog? Who sits here for hours listening as she asks the same question over and over? Who makes the appointments and makes sure the bills are paid? For goodness sake, who is keeping our mother alive? Who sits here silently screaming for help? Where the hell is he?
So, yeah.. i was upset needless to say.. i cant get my mind off of it.. i sit and think maybe i am a bad person for being angry all the time..even if i wanted to, where would i go?
but i just put my mom to bed.. at the end of the day, after all the yelling and crying i did.. didnt even get out half of what i was feeling.. she went to bed and curled up under the covers and right before i turned off the lights, she smiled and said she loved me and doesnt know what shed do without me. its too bad my brother doesnt see that...
It's been rather quiet since the door incident. I suppose I freaked him out when I lost it. Typical quiet person syndrome--I take it and take it, but when it does boil over it's like a nuclear blast. My dad's actually been very polite these last few days. I know it won't last, but I appreciate it while it's there.
It's reassuring to read the posts that other people deal with the same issues. I often resent being an only child in that I have no one to help me out, however, from what I've seen with other families, it usually works out that one does all the work anyway, while the siblings sit around and criticize what's being done. I think that if I had a brother or sister and they did that to me...well....the next time there was a poopy floor, I'd give them a polite phone call and say in an excited voice "hey, Mom's got a present waiting over here for you! Come on over and see what it is!" Then when they arrived..hand them a scrub brush, soap and a handful of rags....
where do we go from here. i will have my first day out tomorrow. i hired a sitter to come stay with granny. i should be happy, but i don't even know what to do. your mom is at daycare do you feel a little relief? i am just wondering. i hope you enjoy your time away. how long has it been since she went to daycare? i am sure she loves you. you know what they say the one that does the most gets treated the worse. and i know with me it is true.
take care. DARE
i dont understand how they cant see that we do this out of love and if we didnt want to help them, yes they'd be in nursing homes or assisted living..do i want to sit on a floor crying my eyes out as i scrub crap out of a carpet? or have sleepless nights.. put up with the verbal abuse? no... of course not.. who really wants to do that??? nobody.. paid or not.. but we do it because they deserve a chance to stay in their home and surrounded by the people who love them for as long as possible..
when i went to the bookstore.. i looked for my normal.. clive cussler, james patterson, etc.. but i ended up in diseases and inspirational.. im not religious at all and wandered away.. i went in there looking for pure entertainment and i found myself searching for a sign.. or salvation i guess.. just something came over me and i was tired all of a sudden and more depressed than ever.. have no clue what brought it on.. i went into the restroom and when i went to wash my hands i looked up and saw myself.. i had left the house without brushing my hair.. pale with dark circles under my eyes..theres holes in my coat and my jeans had old paint all over them.. i needed to get out of there and as i was passing the bargain section, this little green book caught my eye.. its called 'the woman's book of soul'. I flipped through the pages and a passage caught my eye, "I love and accept myself even when I am having a difficult time."
I thought of that passage today, on my drive home this a.m from the day care. i know I love her. Even when she doesnt. So though it hurt, I thought of the passage and was happier with myself. Because I love myself enough to know that she does want me here, I AM doing good here. She does love me even when shes smearing her own crap in the carpet.
of course it didnt work, what she said. mom just told her that all i want to do is put her somewhere so i can visit once a month. that id do it in a heartbeat. i really wouldnt. our parents arent understanding that what we do is initially for love. isnt it? into the closet i went again crying. (the front hall closet is where i keep my clothes and its a small walk in).
sorry im really down this time round posting. its just been hard to forgive or forget lately. i just really think its lack of sleep.
thanks, kathy for your post.. i DO try.. honestly..
julie, im leaving here as soon as i get off the pc... im going to head to the bookstore for a bit and pick up some movies.. right now, mom is fed and medicine taken... everything else be danged for the moment!!
austin..im feeling better just talking things through which i havent done in the past few days like i should have. i felt so much better when i was more active and i forgot that..
beyond.. i will read your story... like i just told austin.. this site has really helped in many ways.. birthdays come and go..
my moms part time companion is here.. i think ill run to the bookstore now!!!
I started caring for my Dad with Alzheimer's when my Mom died 5 years ago and Dad moved in with me. I was 34. I know how hard this is for you, but please try to keep you chin up.
I would love to help you in any way I can.
Lovingly,
Kathy
From last night...
Kelly...first of all you need to get some sleep! When I am lacking sleep, I'm near disfunctional. If the couch is too uncomfortable, could you put the cushions or a quilt on the floor or get one of those blow up beds? When you're tired/exhausted, the things that your mom says are way more hurtful to you. Once you get some decent sleep, you will be able to process things better.
I agree with the other's advice that you need to speak to a social worker and explain that you can't care for your mother any longer. This is not an indication of failure on your part but that people with dementia or Alzheimers continue to go downhill and at some point require professional care. As in-home caregivers, we can only do so much and we need to know when we reach that point. I recall your mom is in her early 60's so she could live a long time and you, at 32, deserve a life of your own and some fun!
It wouldn't be like you are going to abandon your mom as I am sure you would visit and be involved in her life once you are no longer living with her.
You should insist your brother come over to stay with your mother so you can go out and celebrate your birthday - even if all by yourself! Go to a movie or just sit and read in a coffee shop. Get your hair done. Do something to pamper yourself! Btw, when he walks in the door - you walk out. Let him figure out how to care for mom!
Let us know what you decide...we're pulling for you!
Julie Q
There's no judgement involved about whether she's a bad person or whether it's just the disease. Doesn't matter.
YOU decide what you need for YOU. Absolutely, you need to get out of the situation NOW. If you can set her up in a better situation VERY quickly, great. She's lost her chance to make her own choices. If not, just hand everything over to whoever would need to do it if you weren't there - your brother, a social worker, her doctor - and let them pick up the pieces. You're clearly too burnt out to do it right now, and there's no shame in that. I've been there, and so have many others.
Probably making an appointment and telling all this to her doctor would be best. They have the connections to know what the "safety nets" are when an elderly person needs to be in a nursing home. Explaining what's going on will allow the doctor to see that you're beyond what you can deal with, and he'll know what to do. It'll be easier than trying to discuss it with your brother. Clearly you're really beaten up emotionally right now, and it sounds like that won't help you any. Cutting off contact with him for right now would be best for you. If your brother's the POA, give the doctor his contact information and let them hash it out. You've done more than anyone could have asked of you.
I'm pulling for you! I agree it's time for your brother to pickup more of his duties to help you or step away and let you get the real help your mother needs. I believe it's time to make that dreaded decision "nursing home". My mom isn't doing alot of the things your mom is putting you through and I'm giving it 6 months! I know you care for your mom or you wouldn't be doing everything possible to keep her in her own surroundings, but at what costs! I think it's time...I know it hurts, but she needs professional care now! And you're so young, time to heal and take care of yourself. The good Lord upstairs knows all...shame of those family members for letting you get to this point!
-Trish
reading your post I can only say that you need to temporarily get out of there. Depression is a serious disease that can, and sounds like it is harming you. You are not responsible for having depression - sleep deprivation can trigger it. There is no stigma and you did nothing wrong.
I suggest you make an appointment with a medical doctor *not a psychologist or therapist* and go to that appointment. Contact your brother and inform him that he must help you and support your getting treatment. seriously.
You sound like a kind, loving, giving person who will give until she drops. Not good for your health or you. Please take care of yourself by drawing the line and getting out temporarily - no reason why your brother can't treat you to a hotel or B&B for a few days. If he doesnt' get it, print out these posts and hand them to him.
I am not trying to be alarmist - but kindly point out that if it is having this effect on you, it is time for a break and help. As much as I believe everyone is well meaning in suggesting a walk or church groups the fact is it sounds as if you are beyond respite and in need of triage.
Please stay on this board we are all pulling for you.
I to am dealing with my 84 year old mother with profound dementia. She too, is very controlling and manipulating. You should not be taking anything she says personally. They are frustrated, about their condition and they try to think of ways to make things seem right. My mothers psych. told her a year ago that she has to think of herself as the child and me as the parent....ha, ha, she can not accept that. Nor anything else I say to her. I always have to turn requests around or give her choices so she feels she is making the decisions. By your mother calling you a maid, it may be she just does not want to accept the fact that she can no longer care for herself, and worse her daughter is having to do it. It is hard to know when they are in the momment or out there somewhere. I can usually tell by my mothers eyes. Your mothers condition will decline, you cannot wait any longer to get yourself together, for yourself and for her. Try hard!
Who will care for her if you can't? If you can't, thats ok, Maybe its time to put her in a nursing home so you can have a life. Life is to short.