My mom is almost on her way to visit sister number 2. After having her here for slightly over a month, I realize that even though I love my mother, it was too hard for me to care for her. There must be something wrong with me, I couldn't handle it even for a month?
For the last month I have lost my own identity tending to her needs from the time she would get up until I would get her into her bed at night. I am tired and burnt out...I put everything on the back burner to take care of her, ..sometimes she seems so unappreciative, and acts like it's my duty to do all this for her, and what stands out most is that unhappy look on her face.
Right now I'm angry and confused and yet feel a sense of obligation to do this all over again because my mother is in there somewhere.
She is on a list for a Nursing Home but it may be awhile before she gets in. She may be coming back soon if sister no 2 and no 3 can't handle her, but there are some services available for them where they live in case they need it. Since we live out of her area, she isn't covered here to get extra help.
What should I do, am I a horrible person to question whether I can go on looking after her? After observing her for the last month I feel she belongs in a setting where she can get some special around the clock care not in my home. She kept telling my other sisters how terrible she was doing here and how bored she was but she has said this when she was in their homes as well, so she is never happy?.
Sorry, I just needed to vent it out.
I'm sorry you're going thru this. You're not a bad person at all! You're a great daughter for recognizing that your mom needs are greater than you originally anticipated, and possibly she would be happier at your sisters. You've got your moms best interests in heart. Don't feel guilty, you're doing the best possible thing for your mom.
You are not a horrible person and every single one of your thoughts and feelings are identical to those I had when I was living with my Mom. There were many days when I despaired, I put my head into a pillow and shouted I can't do this any more!
It was only because my brother noticed how it was affecting me that he agreed to take Mom to live in their house, he and his wife both agreeing. They did that SIX months after promising me that they would. The longest 6 monhs of my life, believe me. Then after living with them only 3 months, Mom fell down the stairs, broke her hip, had surgery and attempted rehab and wound up permanently in a wheelchair at a nursing home.
I felt guilty for years (Mom went to my brother in June 2005, fell in Sept 2005) but after therapy I realize that we can only do what is possible for us. I was not superwoman, and I was trying to be. I did live with her for 5 years, but remember that at the start she was 'almost' normal .. the last year was really the only BAD time...
Do what you have to do to get that NH slot for your Mom, put pressure on them, say she MUST have a bed! The squeaky wheel gets the oil. Do not feel guilty! No guilt allowed here!
Oh Dorri, just so sorry you're feeling like this. Most here know too well those same feelings.
This is a HORRID disease! That unhappy look on your Mom's face is the same one we've seen reflected from our loved ones....most of it is caused from the fact that part of them realizes the changes...and challenges they are causing US!
So much of the behavior pattern that brings about the Alzheimer's diagnosis will change our lives too! I sure agree with Martha that the difficult decision of nursing home placement is usually the kindest action we can take.
Nothing in our life has prepared us for what any type of dementia brings with it...and we cannot feel guilty for trying to do our best and not succeeding in the manner we expect.
You're stronger than you think Dorri......just keep posting.....Pam
Thanks for all your replies.
I think mom will be happier in a Nursing Home setting. She always had a social personality before the dementia hit. I don't think one family member can provide enough of the mind stimulation she needs.
Mom told me that my sister told her that she doesn't have to go anywhere and that she can live with them? Huh?. How long will my sister be able to do this before calling out for our help again.
Martha, we have a house where our bedrooms are located by stairs, both upstairs and downstairs, so I slept with one ear open listening for mom's night wandering worrying that she might fall. It doesn't help that she is on a blood thinner.
It will take me awhile to get back into sleeping soundly.
Your mom was in your care for a long time, so I can understand how difficult that must have been especially since you were calling out for help months earlier. How did your brother and his wife manage with her, was it difficult for them too?
My mom is quite a bit different from what she was in July in comparrison to what she is now. She has declined rapidly. Most evident is her memory loss and her sudden inability to do anything for herself even the little things, although there are days she will still do some things? I'm still not sure I understand this?
Dorri, you are strong enough to admit that you can't do it any more and that is the hardest thing to do. Just let your sister's know that it is imperative for your Mom to be placed before it comes your turn again. I am sure they will see your point when it is their turn. There is absolutely nothing wrong with being able to admit that you have reached your limit. It is exactly what we each should be able to do. We are not super human. We can't do it all. We can't do the same thing a fully staffed facility does. There are probably 15 to 20 people that have contact with Mom and Dad each day now instead of one. How could I do all they can do.
So I applaude you for all you have done. You have accomplished what you were not sure you could accomplish and your month is almost over. You have done it well but had the strength to say you are done. Be proud of yourself.
The three months Mom lived with my brother and SIL were hard on them and her.
She was used to living in her own apartment, and felt in control there. Suddenly she was a guest in someone's home. My brother and SIL are both retired, home all day (thus making it easier for them than for me, one person, then working full time) .. but she began to 'shadow' my brother, following him around the house like a puppy dog. They could never go anywhere without taking her along. They had to take her to the house closing (they had downsized) and sitting around the lawyer's table she kept asking when the barbecue would be done! They took her to a senior center but it was a disaster, people noticed that she was not in her right mind and ignored her.
Once she had recovered from surgery and gotten used to the routines in the NH, she was much happier there - more to do, more friendly people, not feeling isolated in someone's house. They even took her on several outings, including a trip to a zoo in the wheelchair equipped van. I never did find out how she liked that trip because the next day she said, "what zoo?"
The NH even had an Elvis impersonator at the 4th of July party, which was probably the highlight of her stay, she forgot he had died and thought it was him ...
Hi Dorri,
First thing is that NO your not a horrible person. Mom lives in AL facility and some weeks I say that "I can't keep this up any longer". Mom doesn't do anything now. Nothing. She must be lead to even get dressed. She sits in her chair and waits for one of us to come. I have two sisters and we are all very tired. We have brought Mom to our homes for the night and I'm exhausted when I take her to her apartment.
I don't think that Mom "thinks" anymore. She seems like she has no thoughts. She will call and say she is hungry. I tell her there are snacks in her fridge or sitting right on her cabinet. She doesn't see them or have a thought to open the fridge door. She doesn't move. She will just stare. I suppose what is going on is that the thought process is gone. Like " I want some coffee. I'll get up and make some". Then the thought is gone and she sits.
I love my Mom with all my heart. I know I'm a good daughter. I'm telling you now that I couldn't have Mom here for a month! No way!! After 10 hours at her place I literally feel like running to the car to get home. I'll get her place in order, wash and iron her clothes, get her showered and all lotioned down and she looks so sweet. I give her a kiss and hug and I'm out of there.
All of us here have had your thoughts and feelings. My Mom is fading and I can't stop this demon from taking her. Don't feel bad Dorri. Your only human and your a good daughter. She is only going to get worse and there is nothing wrong with saying .......enough is enough. I'm done.
You did your month honey. Let it go. You are adult enough to realize that you cannot do it again. That is more important than having your mother back again and having something happen to her because you are exhaused and she were to get up in the night and fall down the stairs.
Dorri, your Momma isn't in that body anymore. It's a wicked imposter that is there to make your life miserable. Your momma is gone. The disease has pushed her out of her body and has taken it over. Your mother wouldn't treat you like this, would she?
You had fought the good fight and have done what you can do. there is nothing wrong with realizing that you cannot safely take care of your mother again.
As Martha says, No guilt. You have done well...now let go...we are proud of what you have done!
Thank you, each of your replies are so comforting..(tears..tears..) I need that advice to really sink in...thank you..now I have to find some words to tell my sister especially the one who thinks we need to tough it out.
All 3 of my sisters work and like one sister said when she had mom in her care "going to work was like a holiday because it was a break from mom" I don't work outside the home because of a health condition, so it's mom and I from morning til night, I can't run from her.
Now my month is over, yet this morning I forgot that mom was gone and jolted up thinking I had forgotten to remove her support stockings for the night. LOL think it will take a few days to sink in that she has left.
I wish all a Happy New Year filled with lots of extra strength, lots of patience, love, understanding, and wisdom. I found in my last month I needed all of the above and then some.
Thanks again, I relate to all the replies and I'm grateful for the support and comfort.
A simple word... let the sister that thinks you should all keep trying do it. I knew Mom and Dad needed placement long before they were placed but listened to that lone dissenting voice in the family. I eventually realized that she thought it would work... as long as somebody else did most of the work. That someone was me. She still doesn't know all that I did. We finally evolved into a situation where it was impossible to keep Mom and Dad at home. I backed up and let her handle it. That's when the move evolved. It is easy to say that something can be done when you are not the one doing it. The hardest thing to do is to stand up and admit that you can not handle a situation as it is and have the courage to make the necessary changes. Arm yourself with facts not emotions. Emotions seem to be dismissed but logical facts are hard to negate. It's simple. "I can't do this any more and we need to make other arrangements!" The rest will come out after you start. Be prepared for disagreement and dissention but be firm in your conviction. The most determined voice is the one that is usually followed... be that voice. If one wants to do something different, then let them do it. They will come to your side soon enough
As for jumping out of bed this morning. I hope you used that energy to do something for yourself. Yes, it will take a while to readjust your life but it will happen. My best advice is to pamper yourself for a while and enjoy having your life back.
oh dorri i know just how you feel. you are not a horrible person and dont think that way. i think we all feel some guilt, but you have to do what is best for you and your mom. our lives are short and you have to be strong and take care of yourself. i know how hard it is, but it really is the truth.
The hardest thing for me was finally realizing that Mom had no recollection of the 5 years I moved from Germany and lived with her in her apartment, took care of her, did everything in my power to help her, knocked myself out for her and screamed into the pillow when I couldn't stand it another moment ....
When I called her at the NH she asked me how the weather was in Germany, how my husband was doing - she had lost all memory of our separation and how I left Germany to go and live with her. Sometimes I thought, what did I do it all for? She doesn't even know I did.
But somewhere inside she did know. And I feel her love even now, from 'the other side' where I believe she is still alive and happy.
It is just human to want some praise or recognition for what we do ...
Thank you I know it is hard for you all too.
Mom is very confused too, and asks why sister no 2 didn't come to see her..she's the one that lives hundreds of miles away. My mom's mind is between 3 geographical areas, one day she thinks she's there, and another day there..Martha, I understand the frustration you must of felt at times when your mom was having memory blanks.
One of my sister's wrote me today and told me she can't put mom in a Nursing Home and wants to take care of her indefinitely? It's her home that mom left here to go to and where mom will be staying for how long remains to be seen. I can't interfere in her decision, if she wants to look after mom I have to respect that.
My other sister feels we need to relieve her after a while because she will need the break, so we are back to square one. I tried to tell her that I pretty near had it but don't know if she took me seriously. I'm so tired, I want to help out but don't think I can do it again and if everything goes as planned mom will be coming back next month. Now I'm feeling guilty that I'm letting my sisters down.
Deb, mom has gone but all I have been doing is thinking about her all day and getting more and more frustrated.
Dorri, you're not letting your sisters down. Nor are they letting you down. This is a tough situation and all of you are trying to do what's good for your mom. But they simply haven't come around yet to seeing that it would be better all around if she were in a good facility. Stick to your guns! If sister needs a break, have a caregiver go to her house and grannysit for a day a few times a week, or see if there are any adult day centers nearby. Having my MIL go to a day center two days a week has been my sanity-saver! Don't give in and have your mom come back to your house. Once you do that, you'll be stuck again and they be saying what's the big deal?
I have a motion detector that I place across MIL's bedroom door when she takes her nap during the afternoon. I'm disabled myself and need to lay down, so as soon as she lays down, I do too. But I was ruining my own rest by constantly getting up to see if a noise I heard was her getting up. The motion detector now alerts me when she gets up and I am able to get off my spine for a better length of time. Maybe that would help your sister.
I hope your sisters come to understand your reasoning soon.
You are frustrated because a permenant solution has not been found. The one sister that does not want to place Mom in the nursing home, and the other sister that insist that you take your share of caring for her is what is creating the conflict in your mind because you know that is not what you want. As long as you jump in and take up the slack so they can have what they think they want this is not going to be different. Mom is either in a facility or shuffled between houses because even the sisters that want her at home realize that one person can not handle it. I still say if they want her at home then let them do it. They have not hit the same wall you have. You have to stand up for yourself and say the word... NO.
Flipping Mom from house to house is not good for her. It only leads to more confusion in her head. You have said in this post that Mom's mind is in three geographical areas. Part of that is because you have split her body between three geographical areas when she doesn't have the cognitive ability to adjust to wherever she is... so she is everywhere depending on the moment. This is unfair to her when she could be in one stable location and adjust to a routine (which is the best thing for a dementia patient since they do NOT adjust to change). She could have activities targeted at her abilities, socialization that is geared to her level, and fresh faces around the clock to care for her.
Emily is right. Stick to your guns and let them take care of their own choices. With choices comes responsibilities for the person that makes those choices. It's easy to make choices and the shovel some or all of the responsibility off on somebody else. If your sister have to shoulder all of the responsibility for this choice they will be more like to change their mind
You are not letting your sisters down, you are holding firm to your own choices and letting them take reponsibility for their choices. You are not letting your Mom down, you are trying to give her a stable life with a routine which is what she needs. Holding fast to your choices is what will turn this situation around....
Love, deb
PS... Emily, I am so glad you have found a solution to your bouncing up and down out of bed problems. Great creativity in solving a problem!
I jumped two messages from others to put this here after reading your post.
Listen to me:
Around the time Mom started to deteriorate, Sister was downsized at her company in 2000. She went back as a consultant a few weeks later but was eliminated once again September 11, 2001. By the time she decided to look for a job, mother was so comfortable having Sister around that she started suffering major panic attacks making employment difficult for her, and due to other issues as well, they made her leave.
Sister decided then and there to not work anymore and just stay around to be with BUT she was also travelling the road of de-nile and wouldn't see the true picture even when Mom had the hit-and-run and Sister pulled me into the mess, and I made the decision then and there to take her keyes and took over driving her vehicle so she didn't have it anymore. I also played the heavy and demanded that Mother go to the town Senior Center each morning and forced Sister to make it happen. This was because they were always at each other's throat. At that time mother was still cleaning house and sister was sitting around all day doing nothing.
I edited this message because there was too much to write here about what was going wrong between Sister and I at this time over her not working, over her denial of what was happening with Mother, etc. I told her I wanted nothing more to do with her or my mother's care. I was so done! I wanted nothering more to do about it, and it was all on her for Mother's Care, medicines, doctor appointments, etc.
Here I was working full-time (still am) have two kids in school, a husband in dire heath taking 9 prescriptions himself and trying to hold it all together and she does nothing but sit around the house 24/7. This was before Mother started getting really bad, she was still walking, cleaning, and doing things. But she wasn't able to drive or cook without supervision.
About a year after husband died, Senior Center wouldn't allow Mother there anymore saying she was more difficult to have there. I told Sister about a medically run Day Care Center and told her tha I wanted Mother to go there. (I thought this would be respite care for Sister that would allow her to do all she needed to do). But after dropping Mother off, Sister would just come home and do nothing. I started to have more fights with her about how bad Mother really was and she kept saying she isn't going to put Mother in a home. BUT then she'd come over and say "Kirk, watch grandma, I have to go out" and she'd take off. with no idea if Kirk has to leave for school or how long she's going to be and whether Mother ate or didn't, needed a drink or not, went to the bathroom or not. Nothing, no info, Nada, nothing.
It was like that for about 1 and 1/2 years When she decided not to take her to day care anymore saying she only did it because i forced her too, I said that it was more than it now and I told her I didn't buy into a contract to care for mother and I didn't give birth to my children to watch her dump on them to watch my mother during the times she decided to dump her on them. It was all on her.
I felt guilt and God knows, I cried many nights over the tension next door. She finally started to realize that Mother is getting worse and that she can't do it alone and only recently started talking about finding a NH for her.
So Dorri, please don't feel guilt over not helping Sister. If Sister is home or able to set up care for Mother and wants to do it, let her do it. Maybe one sister take mother one weekend and you take her for another weekend once per month. Do not feel that you failed Sister if she choses this life. Its what she wants to do maybe so that she doesn't feel guilty that she'd failed as a daughter to your mother OR guilt that your mother may have monetarily or emotionally helped her in the past and its her way to even the tab.
Let her do it. You having nothing to do with this decision. She may find out how difficult it is. Live your life, find things you put off doing and do it. Find nice and funny things to do, join the Red Hat Ladies Chapter nearest you and live, laugh and love.
Do it Dorri with no guilt or look backs.
Love always
CaringSister54
Last edited by caringsister54; 01-02-2009 at 09:23 AM.
Reason: too long and stuff written that wasn't really needed
Oh dorri, my heart goes out to you. I'm going through the same dilemna. There is conflict because of all our different opinions. I have asked myself the same questions, argued constantly with myself. I even went into a panic last night and decided that on my way up to edinburgh on monday, i could just disappear. Get off the train and leave it to my brother to phone my husband to find out why I wasn't on the train. I was begining to convince myself that "doing one" was easier. I am not happy with my thoughts. I pray to God for her to die. Then I beat myself up and reason, why should God end another human's life just so i don't have to help look after our mother. And, certainly not deal with my horrible brother too soon. It's like Debs says - this isn't normal. It brings out the best in us and the worst.
Mental, take a step back. Decide what you want (that is the most important thing to do for yourself, not what others want from you but what YOU want) and then hold fast to your decision. You only have to take responsibility for your choics. Brother made his choices and he owns responsibility for his decisions.
I too have been in sibling conflict. When it was obvious that there was more than depression wrong with Mom (she overdosed Dad on antianxiety medication with no memory of what she had done and then told her friends he had a heart attack) I was the one that made the appointment and had her tested. Sisters decided that Mom and Dad needed to stay at home so I found a caregiver to come in 5 days a week and I was told what weekend I was to show up each month. The only problem was that I was the only one without a "real" job so if there was a need for somebody to be there for any reason during the week I was the annointed one. On a Thursday afternoon Mom broke her right arm just below the shoulder and was in an immobilizer. One of my sisters came for her weekend and on Sunday after noon she drove off. Mom couldn't even comb her hair and neither she nor Dad could manage to get the immobilizer off and on properly. I ended up spending two weeks at home. This happened over and over and over. I would throw some clothes in a bag and drive the four hours to Mom and Dad's not knowing when I would be back home. I would get home and have to go right back.
I had just spent a week with Mom and Dad, taken Mom for her reevaluation at the Memory Assessment Center, and been the one present when Mom's driving priviledges were taken away. I had no more gotten back home when the major melt down came and Mom hit the sitter, and the sitter had no choice but to quit. Mom was laying in the yard screaming that she would rather be dead and refusing to talk to anybody. I finally called her best friend and had her slip a Xanax in a piece of Mom's favorite candy and give it to her. I had come to a decision prior to that day. I was exhausted, had major health problems, had given up my life for a year, and it was time to stop. I had been blasted for conspiring with the doctor to take Mom's driving priviledges and was told that Mom and Dad were fine at home.
So instead of jumping in my car again, I called sister and told her to go. That was the hardest thing I had ever done. I was so accustom to doing myself but knew if I kept doing it then nothing would change. Guess what... two weeks later Mom and Dad were moved into AL near two of my sisters. That has not been the end of the sister conflict but at least I know Mom and Dad are well cared for and I have most of my life back. I still make regular trips to see Mom and Dad, to do what I can for them, and keep up with what is going on. I still call Mom almost every day, mail care packages, and send them cards and letters. But trying to do the impossible is no longer on my agenda. I have even gone to see Mom and Dad without letting my sisters know I was there. You teach people how to treat you!!!! If I get yelled at on the phone, I hang up. If I don't like what is happening I will say so. Treat me with respect or I go away. The most important lesson I learned is that helping Mom and Dad doesn't not include making siblings happy. It is not about them, it is about our loved ones that cannot help themselves. Demand that people treat you as you should be treated. Stand up for what you believe, want, and think. They may resist at first but eventually, even if reluctently, they will either treat you as you want to be treated or leave you alone
That's my story and I am sticking to it I can tell you when I refused to be abused, even self abuse, I decided I liked my life a whole lot better!!!
I am so proud of you Deb! See I don't need to be on the soap box...you can do it all by yourself. I knew that if I beat you up enough your moral would improve! ...
Deb is right. It's the old play nice or I'll take my toys and go home attitude. You don't need to listen to people berating you. You have reached a point in your life where that isn't necessary anymore. Not that it ever was, it's just that it seems to take us longer to realise that.
I have four managers at work that I support, plus a Vice President and 62 staff that are mine to care for. One of my managers tells all of her new folks that come in...Jill will care for you. She will cover everything that you need done. She will teach you all that you need to know about the logistics and general office proceedures. She is our corporate knowledge here. If you are going to be out, copy her on any message. She can make your life wonderful or absolutely miserable. A word to the wise...don't **** her off. I don't appreciate people who are rude and irritating (and I have a few). What is gained? You catch more flies with honey than with vinegar as momma used to say. If you choose to be obnoxious, I will make sure that you don't get what you need in a timely manner or that you don't get that appointment in time...or that it isn't the best room you could have had. Courtesy from people goes along way in getting what you need. We have reached the point that we should be respected enough that we don't have to take rude behaviour. I am a good enough person that I deserve to be treated better than that. If accept that sort of behavior, then I am dropping down to that level of behavior myself and I don't like that. I raised my children better than that and I should live better than that also.
I had to do this to get what I needed for Mom and Dad. I had friends within the social workers and the nursing staff. The ones that weren't my friends were the ones that you wouldn't want to be helping you to start with! Mom always said "Treat others as you would like to be treated." It's the old what goes around comes around. But it is true. And Deb is right. It's really hard for someone to yell at you on the phone if you have hung up!
