at my wit's end

[jennylynn]

Hi all,

I just joined this forum. I am truly at my wit's end and everything I have read here makes me feel like you guys (and girls) have all the answers.

First, let me say that my problems pale in comparison to most of yours. I am not the caregiver of my father, 77, who was diagnosed in June 2009. My mother, 76, is his only caregiver. I write because I am concerned about his treatment of her, and my own methods of handling this horrible illness and the stress it produces.

My father has always been very controlling and demanding. He has always wanted everything done his way, no exceptions. He provided a very comfortable life for us (I am an only child) and has made it clear that my mother is to be his only caregiver until the end of his life so she can pay him back.

As soon as he was diagnosed, he stopped going to the doctor. He has a feeding tube which he inserted himself (he's a retired physician) and a wheelchair and that is it. He has told my mother he refuses to use a hospital bed and that if she gets one, he won't use it. He expects her to lift him in and out of bed. He told her she has to put him in his chair, get him out of it, hold him up when he wants to stand at the sink, get to the bathroom, etc. In the years she has been caring for him, he has never said "thank you." When she mentioned that to him, he informed her (before he lost speech) that she's right, and she'll never hear him say it, either. She hasn't been to the doctor in years, she can only leave the house to go to the grocery store to get herself a few things, then she's expected back. He will permit no visitors except for me, has insisted that the windows be covered with newspaper because it upsets him to look at the yard he used to love to work in. If she doesn't move fast enough for him, he tries to hit and kick her. They are affluent and would have no problem paying for any type of in-home care or help.

Living this way is obviously their choice and there is nothing I can do about it. However, seeing them this way is ruining my life. I am not in a position to help with caregiving myself, as uncaring as that sounds. I maintain my own home and life with my husband about 20 minutes away and visit whenever I can, which amounts to about once per week. I work full time, which includes a small law practice, teaching four classes at the law school in my city, traveling for work 1-2 weekends per month, and campaigning for judge in my district. But this horrible living situation is interfering with my ability to work. I can't sleep or focus, I cry all day, I'm not engaging and professional at campaign events. My blood pressure is up, my cortisol hormone is elevated. My husband and I had in vitro fertilization and I am 7 months pregnant. However, every time I go over there I become so upset that I can't do anything for the rest of the day, can't eat, occasionally have to postpone client meetings. As a result, I have only gained four pounds during this pregnancy and my doctor is panicked. I reviewed the last month of my phone bill and discovered that the FEWEST number of times my mother called me in one day was 18, always to cry and complain about the misery over there. And who can blame her- I feel awful for her! Yesterday he insisted that I cancel another blood test at the ob/gyn and come to their house to tweeze his eyebrows. He can't lift his head and I am not supposed to bend down because of back pain and reflux brought on by all of this. When I explained that, he cursed at me and said if I don't do what he wants, he's changing his will. Then driving home crying over their situation, I wrecked my car. I know they'll never change this situation and it is the fault of this terrible disease. But can anyone give me some insights into what I can do to try to change my own way of thinking about this or handling it? I am obviously not doing a good job of "dealing" with the illness and the way it has affected our family. I'm sorry for the length of this post. It has taken me this long to realize that their reactions can't be changed, it's my fault for not doing something about my own.

 

[Miss]

As wicked as this sounds, your father can do nothing without help. If you tell him no (and hopefully get your mother to do the same), he will be forced to take help from others. How does he communicate?

 

[jennylynn]

He doesn't really communicate. He refused any help with that in the beginning (computers, pictures, etc) and now it's too late. He screams at us with his mask on and we can't understand what he's saying. Or he tries to clap his hands or ring a bell to get our attention, then when we can't figure out what he wants, he hits. Or pushes something on the floor to make her bend down to get it. If it's something easy like "add water to my feeding tube" he will point. Honestly at this point I don't think either one of them will change; my mother is completely dominated by him and appears to refuse all attempts to force him to let us help him. She hit the nail on the head the other day when she said, "From the beginning, he has done everything he can to make this as hard as possible for everyone involved, himself included." Thank you for replying, it feels good to know there is someone out there. I'm just wondering what she will say "no" to that forces him to get other help?

 

[Miss]

If he cannot communicate, how is he to stop her from getting someone to come in and help. Maybe at first, the helper could help with everything BUT him, and he could get used to the idea. It seems like it is worth a shot. It took my husband over a year to get used to the idea of someone else helping with anything. He didn't really let anyone else do too much, but enough that I had started to feel somewhat more relaxed. You should have some good resources in Philadelphia.

 

[jennylynn]

There are loads and loads of resources- they just won't use any. I discuss getting help at least once a day with my mother. She has flat-out said, "Even though he's terrible to me, I won't make the last few months of his life miserable. He has made it clear he doesn't want anyone else in the house." So she refuses to get any help at all. Truly, nothing about either of them is going to change. I have resigned myself to that fact and am just trying to find a way to help myself get through this. I can't imagine how you did this- caregivers are truly saints. I am also concerned with the breathing machine and feeding tube, this may go on a lot longer than my mother expects. What I mean is, she is preparing herself to struggle through for another couple months and that might not be the case.

 

[vlcare]

In your first post, you said about your parents that "living this way" is their choice and there is nothing you can do about it.

But the thrust of your message is that your life is in upheaval because you are affected by their life choices, brought into sharp relief by ALS.

Finding a counselor to help you through this difficult time should be your first priority. You have a duty to maintain your emotional well-being on behalf of your unborn child and your husband. I wish you well.

 

[brooksea]

OMG! Here I was just complaining that my husband would not let the CNA at the hospice give him a shower, because he would rather I be the one. That is pale in comparison to what you have just told us!

I've heard some horrifying stories from caregivers, but jennylynn, that is just heart wrenching!

As it seems you will be unable to change the way your father has taken control over your mother (and to an extent - over you), you must seek outside help as vlcare mentioned. You may not have time in your busy schedule, but you might also want to look into a caregiver support group that is sponsored by your local ALSA or MDA.

I am so sorry for the situation that you and your mother are in. Good luck to you. Please take care of yourself!

 

[Katie C]

ok... Missy was absolutely right. Your father is being abusive. Your mother is allowing it. Having ALS does not give the go ahead to abuse others, especially over a lengthy period of time. On the other hand if your mother is allowing it there's probably not much you can do. It sounds like there is cognitive involvement but if he won't go to a doctor there's not much you can do there either. But you can learn to take care of yourself. Learn to say no when you need to do things to care for yourself. I personally would say cancelling your own care to tweeze the eyebrows of someone who won't leave the house is simply not an option. Again.. back to what Missy says... you and your mom sound afraid of this man. Perhaps he was abusive before he was sick, no way of telling that, but quite honestly.. he can't do anything to either of you and it's probably time to learn to say no.

 

[Miss]

I asked about his ability to communicate because some PALS will threaten legal action if their demands aren't met. Clearly, your father has no way of doing this, so at least that is not another humiliation your mother will have to endure. Your mother has it backwards. Your father's behavior is what will make the last months/years of his life miserable.

Your number one concern is this baby. Take care of yourself and this child and you both will be happy and healthy and ready to brighten your mother's life when her chosen hell is over. Be clear...she is choosing this, too. You need to make a different choice for the sake of your health, your child and your marriage.

 

[jennylynn]

Everyone here is so encouraging. After reading these posts, I called my friend who is a psychiatrist and asked him to recommend a counselor to me. He did me one better- called the woman he had in mind and asked if I could come in to see her Monday! Since it's MLK day there is no court I am going and I know I will be able to work this into my schedule with regularity. After all, when I am at my wit's end I don't get any work done anyway, so I need to do what I can to regain control. Not to mention, vicare is right that I have a duty to care for this baby and, by extension, myself. I am already feeling more hopeful, and my headache from the car accident is all but gone.

Please accept my apologies. It seems like many of you are caregivers or people who have ALS. My struggles are nothing compared to yours- I am well aware of that and was hesitant to even ask for your input knowing that I don't go through what many of you do. Brooksea, I read your thread about the hospice and I am thinking about both of you. It is so hard, especially when a big step has to be taken.

Missy and Katie C are right- I plan to discuss this Monday with the counselor. I'm not sure what we're so afraid of. He has said from the beginning that nothing can be said which may upset him. I think we have really taken that to heart and are walking on eggshells, for what reason I don't know. I don't want him to try to throw my mother out of the house or take some kind of retaliatory measure against either of us. I just think it's not unreasonable for me to want my mother to be able to look out of her windows. But Missy is right again- he is choosing to make his life miserable and she is choosing to go along with it. I hope to feel even better after talking to the counselor. I'd like for all of us to be excited about the baby instead of trapped in the misery. If he would let himself, I think even my dad could feel happier- who doesn't love thinking about a new baby arriving?

 

[Miss]

My thoughts and prayers are with you. Stay in touch. There are so many people here that are willing to "listen". Enjoy Monday! Getting it out on the table can feel so good!

 

[caldona]

First thing your mother should do is to hire someone for two or three hours a day a couple times a week then she should sit down and tell him that from now own if he didn't like the way she takes care of him maybe a nursing home could do it better and if he hit her again that's were he was going. You can put someone in there for a week or so when you need a rest. Also she needs to have electric hoist installed without telling him, mine or not medical hoist but they are wonderful.
You should let your mother read these post .
I have ALS I can not use my arms or walk but ever morning I insist on my husband going to have coffee with the guys he gone a little over an hour. But tell her that she is in control now not him unless she lets him.

 

[momap53]

Good luck on Monday! Counseling can be such a relief when you're trying to deal with "madness" in those around you. Once you're comfortable you may even be able to get your Mom to give it a try especially since she'll be seeing such a positive change in you.

Your father's behavior is abusive to both you and your mother.

You're working in the legal system? I'm sure there are laws concerning Elder Abuse in your state. Adult Protective Services? He is basically holding your mother hostage in her own home. Your father may be suffering from FTD as well as ALS.

 

[Katie C]

I like to tell people who have PALS with unreasonable demands that could in fact be detrimental to everyone that at some point, they need to start thinking in terms of a toddler.. you wouldn't let them make decisions for themself because they could cause themselves harm. Especially if there is cognitive involvement things like cause and effect aren't working right so you need to make up for that. And as Missy said.. what's he going to do? OK, so he threatens legal action... are you going to pick up the phone and call the lawyer for him? I think not! It would be nice if he could/would take some anti anxiety medication.. I think it would help everyone!

So glad you're getting some counselling! Keep reminding yourself that baby is number one! And number 2, 3 and even 4!

 

[brooksea]

I am glad to hear you already have the counseling lined up! I so hope the counselor may give you some release and help you deal with this issue.