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TOUGHTIMES

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We moved in with my Mom over a year ago to care for her. She has gone from living upstairs and on a walker when we moved in to being in a wheelchair fulltime downstairs. Our relationship over this past year has deteriorated almost as fast as her body has. I have tried to let her be in control as much as possible on decision making and cater to her. In a way, this has backfired on me and she has slowly cut me out of most important things. I have 2 young children (8 and 5) to care for as well, so she hired some private aides part time to assist a few hours a day which has increased over the year. I pull mainly the late afternoon ,evening and night shift and most of Sunday. She continues to take care of her finances through the help of others (she cannot write checks so uses online services or has others write the check and sign it in her name) and go to doctor's visits with her caregivers. She complains I don't ask enough questions. (I don't think she likes me sharing with them when she doesn't do something at home like ROM exercises) She will deliberately reschedule appointments if I offer to take her. We really do not do anything "fun" together anymore except for an occassional rent a movie around the house. She does not want to go to the kids' activities to watch (soccer game, etc) or go to any activities at their schools (they are 8 and 5 and both are handicap accessible and they have asked her to go). She is quick to blame things on me when they are not done or do not go right and has even accused me of beating her, yelling at her, and being abusive (she tells my brother this and not sure who else). All of it is completely false and couldn't be farther from the truth. I have become the glorified servant who is incapable of any decision making duties but can take her to the bathroom, feed her as needed (she can no longer feed herself), get her out of bed and into bed, etc. She beeps I come running. She can no longer stand and is fulltime in a wheelchair. She has loss all use of her left arm and her right arm is very weak. She can no longer use utensils to feed herself but still attempts finger foods by herself. She needs assistance most of the time with lifting a drink. We use a hoyer lift to transfer her between wheelchair, bed, and shower/toilet chair. On top of it all, her speech is becoming very slurred. She got a Dynavox speech machine last summer, but as refused to play with it to learn how to use it. Recently I asked her what will happen when no one can understand her, and she basically said oh well. As it is, I often have to translate for her and even then I am asking her to repeat several times which she gets angry and exhausted with. The same thing happened with the hoyer lift. It sat in the corner for about 2 months until one evening she could no longer stand up to transfer to the toilet. So there I was at 1130 at night with no nursing experience and no training, reading the book on the hoyer lift to try and figure out how to use it. They had showed her at ALS clinic but she again took a health aide with her instead of me. My brother and I juggled our schedules to try and go to the March ALS clinic that she had scheduled and she ended up rescheduling it to June (first availability) because she did not want us to take her.

My question is this. She has several times asked me to move out including last Sunday. Then within the same week she tells me she cannot afford 24 hour care. I could not tell you if this is true because she does not share her financial info with me, but feel that it is partly untrue as I know she has a lot of equity in her home that she could tap. Tonight I gave her an ultimatum because I am sick of it. I told her that our relationsip has deteriorated and the only reason she wants me around is because she cannot afford 24 hour care and she does not show that she wants her grandchildren around. I told her I would only stay if she would go see a counselor with me. (One was referred about 6 months ago, but she refused to call them back). When a nursing agency came to the house to show us how to use the hoyer she refused to sign the paperwork, so they left. She refuses to give up Power of Attorney and wants total control still of the situation. She flat out refuses to see someone and told me if I want to move out then move out. (She has said this before.) I am seeing a psychologist personally because of this constant turmoil. I want to do what is right by my mom, but within reason. I told her when I moved in that I needed to care for my children and that during the day I would not be available consistently. She has manipulated me into helping most days because I feel guilty. I no longer have a life and alot of times my kids ending up fending for themselves which I feel is unfair. The level of care she requires at this point is beyond me when I am also caring for my 2 kids. I tell her this and it seems to fall on deaf ears. We keep visiting the same issues and it takes forever to get resolved.

Ok so where is the question, right? Do I just make plans to move out and go forward with it and give her a date? Do I continue to try and work with her because in her words "I won't live long" but it is draining me physically, emotionally and I'm just plain TIRED. Nothing is left for my kids and their dad/my husband is currently overseas. Luckily my brother came over today and played with them, otherwise it would have been another TV watching day. I am sorry this is so long, just trying to give a little of the history behind the moving out issue. We have looked at facilities but she is beyond an assisted living facility and would need a nursing home. Most of the nursing homes in the area say she would be very young for their population. All along, she has asked to stay in the house which I have tried to help her do. But at what cost? When do I say enough is enough? And if I do decide to move out, how to I get by the guilty feelings?

Thanks for any advice!
Stephanie
 

CindyM

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Hi Stephanie. First of all I want to welcome you to the forum and thank you for being such a good mother and daughter. You Mom's behavior sounds just a little paranoid, and unfortunately it sometimes does happen that an ALS patient will also have dementia. Maybe the social worker at your Mom's ALS clinic can help. I hope so! Regards, Cindy
 

brooksea

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Stephanie,

I agree with Cindy. It sounds as if she may have a touch of dementia.

This is just a thought: Spring break is coming up soon for school. Would it be feasible for you and your children to take a "vacation" from your mother? (Even if you just went and stayed with a friend for a week or two.) If you could, this might give her time to think about what it would be like without your care and she might learn how to show her appreciation for all you do for her.

I think getting in touch with Social Worker from the ALS Clinic or the ALSA is a good idea also. They may be able to intervene. But it sounds like your mother is very good at manipulating people.

It must really hurt your children to be rebuffed by their own grandmother, but that is a whole different issue. In the interest of your children, I think you would be better off with different living arrangements if your mother cannot bring herself to dignify your efforts on her behalf or to show her grandchildren that she would like to be involved in there lives.

I'm sure your mother is hurting inside, but you have an obligation to your children and their future. Perhaps getting your own place and scheduling a visit with her once a day would be better for all involved. She already has home health care coming in, so she would just have to up the level of care she receives from them.

Don't know if I've helped or not. Keep us posted. I hope you are able to come to an understanding with your mother.
 

givenin

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Hi Stephanie

As your Mothers caretaker you should be able to talk with the councilor at the ALS clinic they can be discreet and have I'm sure been though cases like this before. They should also be able to judge her behavior. I would also be concerned about others signing cheques for her with out Power of Atorney that dosn't seem right.
Jimercat is right you and your kids come first over that kind of emotional abuse and that is what it sounds like.
 

TOUGHTIMES

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Thank you!

Thank you for taking the time to read through my lengthy post. First of all, yes we are going away for 5 days over spring break. I have tried to plan the trip with her since January and we are 3 weeks out with no firm plans on who is staying and what it will cost. I ended up buying the airline tickets (actually redeeming credit card points) in February while I could still afford them and to make sure we went and were not talked out of it. We are headed south to Florida to see my mother in law (turning 80). I am hoping it will be a good trip for the boys as she loves to see them. It wouldn't call it a completely relaxing trip as she and I have our issues as well, but they now pale in comparison through what I have been through in the last year. It is ironic how certain life events give you a whole different attitude (and acceptance) for certain things that use to bother me in the past.

Secondly, I did try talking to the social worker and I was hopeful to discuss some of this with them at the clinic visit but my Mom rescheduled her March visit to June! I called the social worker ahead of time because my Mom told me she wanted to reschedule. She has not been since the fall (almost 5 months I believe) and they are overbooked so they gave her the next available. Both my brother and I talked until we were blue in the face trying to convince her to go.

I tried to have a discussion with her tonight about caregivers and scheduling (it is a nightmare right now because we have people coming in various time shifts.) We are trying to convince her to hire them in shifts to cover most of the day instead of hours here and there. She states I do not want to argue. I wasn't arguing just trying to have a discussion about this new caregiver she hired (can work full time and overnights) and what is a fair amount to pay her. Since I don't fully know Mom's financial decision, I really cannot be the one telling the caregiver what she is getting paid . Yet, most of them look to me to answer the questions and often I cannot because I really don't have the power to make decisions.

I think I am just going to have to find other living arrangements and maybe set a date 2-3 months from now. I have told her I would stay if she would agree to talk to someone. It's so hard, because in a way I feel like we are playing a game of chicken. She has told me to move out (i.e. driving the car straight at me), I have acknowledged I will move out (i.e. driving the car straight at her), and I have given her the option of counseling in order to stay and work it out (i.e. telling her if she swerves I'll swerve). In the end, I am afraid we are headed for a collision with me having started to move out and then there are no alternate arrangements made forcing me to stay. It is hard for me to coordinate a replacement if I don't have the power to pay them.

I am so sorry this turned long again. THANK YOU ALL FOR YOUR SUPPORT!
 

alsventer

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Your story is different from mine but I still feel your pain. I feel that I am neglecting my children and husband and myself I guess in order to stay with Mom. She's on a vent and requires 24/7 care.

It's hard not to feel guilty.
 

cukita99

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im 53yrs old n i go from bed 2 wheelchair n back 2 bed. i require help for everthing except i still hold my own spoon. even thou its hard to get the spoon to my mouth, i still do it. i wish i had a family member to care 4 me as it is expensive to pay but i dont want to be a burden so i pay a lady to help me m-f . she gets me up, bathes me makes my food sits me inmy wheelchair, in front of computer n tv, n i dont boother her but mayb twice for the bathroom. my 18yr old lives with me n sometimes in the middle of the night he goes n turn me. on friday he takes me to my parents n they care 4 me untill sunday. he pays my bills. mayb u should try hiring somebody for during the day. i hope i never get to the point that im rude or mis treat the help. i am just glade to have help. its hard 2 communicate cuz i cant speak so i write but my parents n my caretaker cant read english n my spanish is bad. u r a good daughter. wish u were mine.
 

CindyM

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Cukita, your post, and ALSventer's, gets at the heart of a couple of things for me. About the guilt, I'm sort of neglecting my job and my hubby and myself right now to take care of a couple of sick family members. I would feel worse if I had small children at home, but right now I tell myself this is only temporary. I agree you do have to make careful choices if the kids are feeling neglected, though.

About having to need care: this is the subject that i think about the most. Someone asked me the other day that if I get DX'd, do I know if I will want a vent or feeding tube but these questions are too far down the road for me. Needing help, however, seems right around the corner. I wouldn’t want my family to forget about me entirely and leave me up to the hands of strangers. But I certainly do not want to be a burden. I think I would like THEM to have help with me, so they can do what we all like best – hang out together.
 

Steve100

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Hi Cukita

I hope you get the support you need and deserve soon. Could your son spend a little more time with you? Even if it was just to keep you company.

Take Care

Steve
 

cukita99

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cindy i didnt mean to make u feel guilty. i dont want to b a burden either thats why i sacrafise n pay a stranger to care 4 me.
steve my son feels angry to see me like this n trys to stay away. onces iin a while he invites to his room to watch a movie n that makes my day
 

CindyM

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Oh you didn't make me feel guilty! LOL I am immune to that sort of thing, since I do it so well for myself! :-D

I know your son's anger is age-appropriate but I hope you or he finds osmeone "outside the ring" to help him work through it so her can get busy making happier memories with you. For the record, being invited into his room to watch a movie is HUGE, at least in my family! :-D regards, Cindy
 

cukita99

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my son has an appointment with a psych. this month, hope it helps him.
 

TOUGHTIMES

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cukita,
Thank you for taking the time to respond to my post. I know how very hard it must be and your words were very kind. I too feel so guilty to think these thoughts. I try to put myself in my mom's position. I actually see a psychologist to sort out my feelings and to help me come to the right decision. My mom is not a burden to me in the sense of having to take care of her with the ALS. My frustration is how our relationship has deteriorated and that everything I try to do or help with is met with anger, negativity, or flat out disrespect. Maybe this is her way of dealing with it. I just hope that we can somewhat mend our relationship before she passes. Your son may be able to find clarity in seeing a psychologist. I know it has helped me work through some issues and have a different perspective. Watching a movie in our family would be huge as well. We use to do Friday night movies downstairs (we live upstairs) and the kids miss it! Maybe I'll try to do that again this week.
 

Steve100

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Hi Cukita, it is difficult at that age but I think he will regret it if he doesn't spend more time with you, so it will be good for you both. I hope you spend many more times with him in the future:)

Take Care

Steve
 

cukita99

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thanks steve. i know he will regret it. i talk him into reading 4 me at night b4 bed. so the roll is reverse, now its his turn like i use to read to him. he actually enjoyed it. well se how long it last.
 
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