Dad has given up and I am so sad and frustrated

[dadsdaughter]

Hi everyone,
I desperately hope someone can help me understand my father's behavior. Some quick background. He was officially diagnosed last Feb, 2009 with ALS bulbar onset and his decline has been very rapid. He is now wheelchair bound. No use of legs. Arms and shoulders tired. Some pain, dull and constant. Since he started declining, particularly when he could no longer speak and be understood, he has shut out everyone except my mother. My father was larger than life until this cut him down. He is 71 years old but was in perfect health and physical condition. He worked out 3X a week and lifted weights. I sometimes thought he would outlive me. He is a retired professor and a great writer and was a great speaker. But he doesn't talk to anyone except to give orders regarding his basic needs. He has a dynowrite machine and excellent typing skills and we all would love the opportunity to speak to him but he won't engage with any of his children.
I help out every day because it is too much for my mother. I am the oldest and had the most in common with Dad. Reading literature, politics, philosophy. But he won't discuss anything.
He has refused a feeding tube. He has lost most of his body and looks skeletal. He consumes less than 800 calories a day. He is saying he won't live until Christmas. But it isn't like he looks forward to Christmas--he has asked that we not celebrate it but my mother insists that we do. He won't write in his journals or write a farewell to anyone. I am so frustrated and hurt. He is angry a lot. I read in Elizabeth Kubler Ross' great book "On Death and Dying" that men who were most controlling and who had the most control over their lives are the people who have the hardest time with accepting death. My Dad is that person. I hate to see him die without coming to some kind of peace with what has happened. I hate to see him possibly feel some kind of regret over wasted time. Has anyone had this experience? Any advice at all? I don't care about me, or anyone who is living and caring for Dad, I just need advice on how I can help my Dad in some way...no matter how small. Please post your thoughts, ideas, things that you have done to help your PAL feel the tiniest bit better emotionally? All Dad cares about each day is taking care of his basic human needs like food, meds, bathroom. He expresses no interest in anything and won't even talk about death. I am so lost. Thank you all.
Val

 

[joelc]

Hi Val, welcome to the forum! Sorry you have to be here.

You ask a very hard question. I am sorry you and your family are going through this. He has to decide for himself, there is really nothing you can do except keep loving him. ALS is an extremely tough disease for everyone. Sounds like he has given up and sees no reason to continue. It is too bad he cannot see that he still has a lot to contribute. He can still write (type) so he has the ability to communicate. As one who is totally incapacitated I understand what he is going through, but life is not over! It is a choice each of us has to make.

My heart goes out to you.

If you can get him to look at our website he might change his outlook, others have.
Living and Surving with ALS

 

[brooksea]

Is he on an antidepressant? Sounds like he needs to be! He is lucky to still have use of his hands. I hope he will realize that he should savor what abilities he has left and cherish the moments he's being given to live, even with ALS. Good luck to you and your family. I hope you can find support on this forum, as there are a lot of great people here.

 

[tdamess]

so sorry you are having a rough time i have no answers for you but, ...maybe i know what he might be feeling as he is a proud man-- helpless - he may not want anyone to see him the way he is that he can not be who he was and able to do for him self..if i were you i would tell him everyday but , no more than once a day go to him and ....say i love you i do not want you this way either and i dont want to lose any time i have with you left feeling you dont want me to sit beside you and talk ....give him a minute if he say nothing , grabe a chair and book to read and sit by his bedside...and leave it at that....it may not work but, that is what i would do...best of luck

 

[trfogey]

Hi, Val. Sorry you have to peek and poke around our little corner of the ’Net, but I hope we can give you a little helpful advice.

Joel and CJ have given you some good advice about how to help your father change his outlook on things, but I don't think that's all the problem here. Maybe it's just me, but I detected a distinct whiff of "He's not doing things the way I think he should be doing them." I can assure you that I'd be rather grumpy and hard to live with if I had someone with that attitude around me. Let me pick out a couple of examples and give you one PALS' reaction to what you describe.

Apparently, you have read some of Dr. Kubler-Ross' work on death and dying. Now, you're watching your father to make sure he gets through all the stages and dies a "good death". My advice: Take Kubler-Ross to the nearest secondhand bookstore and trade it in on a good book of poetry (preferably cheerful or inspirational) to read to your father. If I had a member of my inner circle coming around me trying to find out whether I was in the denial stage or the bargaining stage, I'd quickly find an excuse to go take a nap when he showed up. And heaven help you if you were to suggest to me that now might be an appropriate time for me to "write some farewells", "while I still can", of course. My only concern at that moment would be to assure that the DynaWrite had sufficient velocity to bounce back to me if it missed you in its trajectory.

Second, you seem very resentful that your father is less communicative now, even though he has a DynaWrite. Have you considered how unsatisfying your father may find the DynaWrite to use in a real-time conversation? Since my diagnosis, I've kind of specialized in studying and testing alternative communication devices for pALS who have lost their speech. In a word, they all suck. PALS use them only because they have no other choice, and nobody likes using them. The most common complaint is that communications are slow, tedious, and generally not worth the effort required to use the devices. Believe it or not, your father's reluctance to use the DynaWrite might be something as simple as not liking the sound of the voice the device uses.

My advice to you: educate yourself about these things. If your father can do without his DynaWrite for a day, slap a piece of duct tape over your mouth and use the DynaWrite as your sole method of communication. Be sure and schedule a lunch date with half-a-dozen or so of your closest family or friends so that you get to feel the sting when those close to you start finishing your sentences for you or simply start talking around you because they lack the patience to let you finish what you've started. By the end of that day, you'll have a whole new appreciation for how pitiful a replacement that the DynaWrite is for even distorted speech and for how patient your father has been about everyone bugging him to use it more.

I know I've sounded a bit harsh here, but it's really intended as a little bit of tough love. Being a PALS is a roller coaster, especially emotionally. Sometimes, we all just have to hang on as best we can. Dr. Kubler-Ross' work explains some things about death and dying that hadn't been effectively verbalized at the time, but her work is not the exclusive definition of a "good death", if there even is such a thing. If you really want to help your father feel better, get out of his way so he can tread the path he is most comfortable with. He needs support, not guidance; love, not lectures; a helping hand and not a steering wheel.

Good luck.

 

[rose]

Val,

I'm sorry your dad is experiencing such a rapid progression. Perhaps the speed that he and the rest of your family are having to face new changes, is making it harder to come to grips with any aspect of it. It takes time for anyone to make their way through the process, and none of you have had "time".

Your plea is so sincere and selfless, my heart really goes out to you.

The only thing I can come up with as a strategy, might be to ask him for his help with something. You say that the two of you are the most alike. Is there a project you can get him to give you his perspective on? Maybe not to put it to him that its a project, so much as to say you need HELP from him with "this", whatever this might be. For him to be able to turn his mental energy toward a daughter who he loves, should be satisfying to him.

I wish very best of hope and peace for you and your family!

 

[Twinsmom]

Sometimes the truth is a big pill to swallow...especially when it's placed right in front of you with no soft edges like trfogey just shared.
But...the truth is the truth, and that's what you were looking for. As the wife of a PALS, I pray constantly to be the kind of support my HUSBAND needs, not what I need, or want him to need. And that is often VERY VERY different. HE is the one living with this horrific disease.

A couple of ideas for you to ponder...
1. Begin to consider some of the language you are using and how it should reflect acceptance and compassion-not veiled judgement (ie "he has refused a feeding tube" as opposed to chooses to not to have artificial nutrition)

2. My husband tells me, one of his biggest burdens, is not HIM dying, but the pain his dying will cause me and my son. Wishing, there was some way to protect me from this. Maybe your father is distancing himself in an attempt to protect. If you can show him your strength and love, MAYBE he'll feel safe putting his gaurd down. If he can't...love him

I've come to believe, that there is no WRONG way to go down this road. Your dad must be devastated to have lost so much of his physical self so quickly, and crushed to have those he love see him so helpless. Not to mention confronting his own mortality.Just continue to love him...and tell him you love him.

And then- let him know you love him.

Peace during this incredibly painful time.

 

[BethU]

I'm with trfogey ... a) Having no way to communicate except by Dynavox, especially for someone who is used to communicating and writing fluently, is almost impossibly frustrating. It takes all ... I mean ALL ... your energy to just communicate your basic needs.

b) It sounds to me like he is coming to peace with his death on his own terms. It is a very private process, and must be done internally ... it's not really something you can discuss with others .... especially when you cannot speak any longer. It's called the life review process, and requires lots of reflection. If he doesn't want to write a farewell or continue his journal, that's entirely his decision.

c) Not having experienced ALS yourself, you probably can't grasp the degree of physical exhaustion that comes with rapid, spreading paralysis. It takes all his effort just to keep breathing in and out. If he doesn't want to chat with his children, it is because he needs to continue internalizing and processing his imminent death, and because he does not have the energy to try to communicate about other topics, no matter how deep his love is for you.

d) How can you help him? Respect him and his intelligence and (quite natural) anger, and don't expect him to die by the book. Back off. Don't press your preconceived ideas of how he "should" die on him, or let them color your sensitivity to his unique personality. It's a shame your mother is disregarding his wishes about Christmas, but I'm sure just the thought of a house full of people and merriment that he is expected to dredge up the energy to celebrate wears him out. I hope at least the celebration is low-key, and that he is not required to participate actively or interact too much with others.

He won't even talk about death? Why should he discuss it (via DynaVox, yet!) with anyone else? You don't need to help him emotionally. Just be there. Follow his lead and respect his needs. I know you are grieving horribly, but this is really about him, not you. You will have to process your grief your own way, just as he is doing it his way.

God bless.

 

[mare]

".....support not guidance; love not lectures; a helping hand and not a steering wheel."

Good advice for all caregivers!

 

[thelma313]

As a daughter to a wonderful dad with ALS I understand you all too well. I know how heartwrenching this is. It literally tears my heart apart to watch my dad deal with his continued progression and relentless series of losses. Soon after the diagnosis I thought that he had to do something big like write up a bucket list and check everything off one by one. I thought he should go on a big trip, revisit his homeland of Italy, go skydiving, swim with dolphins, something really grand... but it became evident to me that my dad wanted to keep his life as normal as possible. That is what he wanted. He and my mom went to Florida last January like they did every year and he got in a couple of golf games. I went to visit my parents in Florida and I realized that was the best thing for him. On the first day I was there he slid into the hot tub and sighed. He had a HUGE smile on his face, his head was tilted up to the sky and the sun was shining down on him. That's when it hit me. This is what makes my dad happiest. Just simple little things like sun and water.

As my father has lost more and more mobility, and as the disease has crept on and taken more and more away from him, I realize that the best way I know how to make my dad feel the tiniest bit better is to make him laugh. It's that simple. He is also very happy when I am just holding his hand, giving him kisses... or even just sitting in the room with him. Sure I want him to use his Dynavox more, but he doesn't want to. He prefers to say what he needs to say in other ways. Last week as I was leaving he squeezed my hand. I said to him, "I love you too" and his eyes welled up because he was so touched that I knew what that little squeeze meant.

I am so sorry that your dad is angry. Emotional lability may be at play there but I have to agree with what others have said, there should be no pressure on him at all to live or be a certain way. I'm not saying you are all knowingly putting any pressure on him but maybe he feels that more is expected of him and that makes him resentful. I hope that you are able to process what is happening. I sure do find that to be the biggest challenge. My heart literally aches when I stop to think about what is happening to my dear sweet dad but every moment I am with him I feel blessed and humbled to be in the presence of someone facing such adversity with such a brave heart.

Please feel free to lean on us here for support. Keep posting and sharing, it really does help.

Rosella

 

[Marjorie R. Wilcox]

I am touched by the words of trfogey as well. "Support, not guidance...love, not lecture... and be a helping hand, not a steering wheel."

This whole column of responses is super in my estimation. As a caregiver of my PALS and working with other people experiencing death, I often have been a steering wheel or lecturer, I think. I have been recommended highly, but know I can do even better in the future. I hope I am prepared to be what my husband will need... and only when he needs it.

I closed the eyes of my sister on December 5th. She had leukemia. I was working with my other sister and Hospice to ease her passing at home. I was giving meds and staying close throughout the nights, doing the caressing and comforting ministrations that you can. Her death was peaceful and she wasn't afraid. But it was still difficult for me even though I wouldn't have wanted to be anywhere else.

Before my sister was completely unresponsive, I was doing "things" for her and her husband and the other sister were nearby. Betty forced her eyes open and mustered up the strength to say "Boo!" and then laughed. We jumped a foot! It was her way to tell us that we were way too serious, I guess.

Death and dying are not subjects anyone can make comfortable, but I repeat, the above advice is SO SO good. I hope we all reread it when times get tough.

 

[brooksea]

Thanks for a pALS perspective.

 

[Zaphoon]

TRFOGEY,

I learn something from everyone of your posts. Your post on this thread was particularly educational.

Thank you for the wisdom you share.

Kim

 

[lgelb]

Val, my husband has ALS and sounds similar to your dad in terms of temperament -- all the more so since he has a rare genetic disorder that already has disabled him in many ways. He can't as yet believe that anything besides traditional keyboarding will allow him to write. So, while I am investigating options that might accommodate his pre-ALS limitations, I know that if they don't work, as he defines it, his life expectancy will diminish.

Your dad may believe that he no longer has a viable way to say everything that he might otherwise express and would therefore rather withdraw completely, or thinks that is what he should do (for a variety of possible reasons, including, as he might see it, saving his family pain).

If your dad knows that you accept and support his journey to death on whatever path he chooses (whether this is true or not), you are doing the most important thing that you can do. I would not worry about whether he dies angry, afraid and/or before he has to (his choice), so long as you have let him see that your admiration and love for him and what he has accomplished are undiminished (your choice).

Since we're in Wilmington also, if you're up for a walk or lunch, whatever, to blow off steam, let me know.

--Laurie

 

[tdamess]

so many good ideas now i am not sure what i would do