6 mos ago

[teawoman]

Hi Everyone:

I am not caregiving presently, but will probably be involved with the team of carers who are helping out my DIL.

6 mos ago, she could dig in her garden. Hug her kids. Make love with her husband. Talk and smile and laugh and go to work. Drive. Swallow a twinkie. Breathe in a flower's fragrance.

I cannot fathom the degree of acceleration of her symptoms, it seems beyond comprehension. 6 mos later....she is in a wheelchair, her voice is slurred, her left side is disabled, her breathing is now gasping and eating is a desparate act to taste & enjoy food before she can do it no longer.

((((( I hate it for her, I hate it for everyone here))))

I am not wanting to hate God, but I am getting close to doing that. They had a nice life, both of them with great jobs, lovely kids.

Now that life is about none of those things. Her husband is coming through like a champ, but even champs get tired and unhappy and he is stellar person in many ways, but I know the crash will come.

I was caregiver to both my mom & grandma when they had vascular dementia, but this seems worse. At least both of those ladies could eat & breath & move. Comparisons are odious, but ALS seems a living torture...

It has altered my ideas, that is for sure. I almost want to pound those folks who have a few aches & pains & complain or just complain. A 75 yr old friend is a great whiner, but I want to tell her "at least you can walk, eat, talk, breathe....be glad."

I know I am sound unkindly, but I know I am mad at ALS, not anyone or even God (though HE does knows I am not happy, LOL).

Now I need to do something, not just feel hate or anger. Help me to do that. Thanks for listening.... teawoman

 

[joni51]

Welcome teawoman to the forum. So sorry about your DIL. We all know how you feel. Believe me I am still trying to come to grips with my husband having it. It definately can sneek up on you, and yes it is an awful disease! Does make you want to kick some hiney on complainers of trivial things. That said read the posts, make friends, get advice, and help here. Very close family on here, and all are welcome.

 

[teawoman]

Thanks for the words of encouragement.

I feel bad for my DIL; I feel that, with any other illness you could name, she would at least have a fighting chance. At the very least. Maybe some very advanced cancer, that is not so, but I cannot think of one illness that is as devastating as ALS.

I do not know how she can have fallen so fast. A year ago, was she having symptoms?

And did she just ignore them or think it was stress? I wish she had rec'd her Dx earlier....then there would be more time.

I know what probably happened: she was living a happy life & they were finally in good shape with money & her kids were progressing nicely & she had even lost a little weight & looked good....& she still looks healthy, to be honest. Her skin glows, her hair, the same...just hard to take that she is not healthy, just looks it. Who would have thought to say anything to her a year ago or sooner, if they had noticed she walked oddly or did not have strength to pick up something?

Then this makes me think, bc I have dropped a couple of things in the past week. And I think "don't go there, you are just having sympathy pains not ALS" But I think about her alot & my body is telling me I need to do more than just think about her. So I will get a grip & get with it.

With my own family members it was different, I could make the decisions and I knew them very well, all my life....I had an ease of attitude with them. I am not so close to her & do not want to impose or presume, but I think that this stage, any help is good. I do have good health & strength but not sure I could lift her onto toilet, that kind of thing. Yet I recall doing it with my mom and Gran but they could somewhat help me.

I guess I have lots of thoughts that needed expressing & practical advice too. I will take a look around & read alot of what is written here. I already see some topics I need to look at....thanks for the welcome.... teawoman

 

[LizT]

youre going to be a HUGE help- even if you arent able to do some of the physical stuff.
Just look at what youve said. You have a great big heart and very clearly care very deeply for your DIL.
That alone will be a huge help.
Welcome.

 

[brooksea]

Hello, teawoman.

Sorry about your DIL. I'm sure you will be a great support to her. After all, you've already found this forum and it has just about all the info you need to deal with ALS.

 

[Pat Paine]

Dear Teawoman,
Just ask how you can help, I know they will love it. There are so many non physical
ways to help,visits that allow respite for your son, grocery shopping,picking up the meds,
bringing in the flowers she likes,making a meal, laundry etc . Supporting your son, sitting with your grandchildren.
You sound very caring,they will love any help you can offer and you will feel good too.
blessings, Pat

 

[joni51]

I can remember thinking just what you said, why can't it be cancer or Anthing else! I bet you will be a big help to her, she will need all that help.

 

[LauraA]

Dear Teawoman,
I understand everything you are saying---my father has also dramatically progressed with ALS--- he was able to get up and fix his roof 6 months ago and now he cannot sit up in bed! Its hard not to be angry but please try to pick out the small blesssings in life. Hang in there....

 

[abbas child]

Dear Teawoman,

You've been told such good things already. I just wanted to welcome you and say how much you really can do to help your daughter in law. I know I read a different post you wrote yesterday, but cannot remember: do you live nearby your son and daughter in law? If so, cooking, doing wash, changing sheets, etc. is such a blessing, as is shopping. People have done all these things for us. Draw as close as you can and just do whatever they would welcome regarding help, time with the children, whatever.

I'm so sorry this has struck your family, in a woman still young and losing ground quickly.

Best wishes,
Ann

 

[SueG]

welcome to the forum, teawoman, and I'm sorry for your family's situation. I too was recently diagnosed, and changes are happening faster than we were hoping (isn't that always the case!), but I can still get around. If you live nearby, is there a chunk of a few hours a week you could just schedule to be there to do whatever she needs? I know it is still hard for me to pick up the phone and ask for help, so my perceptive sister has arranged time off from her work on Friday mornings where she comes over and is at my disposal. There are so many things I just can't keep up with (still working p/t) and though my husb is great, the extra help is a load off my mind. And if I don't feel like directing a project, we can just have coffee together or just hang out (she knits; I read-- hands not so great with the needles anymore).
The dynamic is changing day-to-day, and it's hard, no getting around that. Good luck, keep us posted-- your DIL is lucky to have you.

Sue

 

[tdamess]

tealwoman i know your anger real well even thou we become acceping of what we can not fix my hurt and anger run deep , then there are times i feel stupid because i can not find a way to save my son i need to be a chemist , scientist , but , my mind wont work with what i want it to do , then helplessness then back to anger so , you have many emotions ahead of you but , know we are all here there are great people here welcome to the form you came to the right place but sorry it has to be

 

[NancyJ]

Tealwoman,
As I am also new to contributing to this forum, I will just tell you that anything that anyone wants to do for us is welcome, although, initially hard to accept. The biggest thing, really is time. When our family visits, its like a little weight has been lifted. I don't have to keep an eye on him quite so closely. I can take my time and head to the mall, or store. So, please offer your time to your family.
Nancy

 

[abbas child]

I thought I would add another tip for helping out. This disease is, for many (most...all) very fatiguing. When my helpers come, I've tried very hard to visit, to ask about their lives, and to be a friend. As time went on, I began to dread the visits for that reason. It feels so selfish not wanting to have a normal exchange of information, but there it is. Truthfully, I usually can't remember half of what I'm told because I zone out. My helpers who I see frequently (nearly daily or several times a day) usually are great, telling me to stay upstairs and rest, while they finish doing whatever needs to be done. They know which lights to turn off so I can nap, and they know which to leave on so I'm not left in total darkness. It is a blessing beyond belief knowing that they understand and aren't offended.

So, maybe not now, but at some point do expect your DIL to need a lot of down time with no conversation. It isn't you, it's the disease.
Ann

 

[pepsiman]

Teawoman, know that you just being available is a blessing beyond belief. I traveled this road, in the same role as your son. I had lots of well wishers, my in-laws were very supportive, emotionally, but nobody did anything to help. My family might as well have been on Mars for all the help they gave (and they were less than half an hour away). It appears that you really see what is going on. Act on that! Please! Whatever you think your DIL and son are going through, I promise you it's exponentially more difficult than they allow anyone to see. Don't offer to help "in any way", just show up and do it. They will be infinitely more grateful for the help they don't have to beg for. What you see, and think you understand, is but a fraction of what your son has to deal with every day. You obviously care a great deal, and are willing to help your DIL. Honor (pride?) might keep your son from asking for help but he will welcome it if it's given freely and without him asking for it. Us men are a stubborn lot, but we do appreciate it when people show compassion and love. We just aren't capable of asking for help, it makes us feel like we've failed in some way.

 

[Katie C]

Dick, you are so right! About once a month, Glen's cousins would call out of the blue and say they were coming. They would descend on my house, clean it, bring food, clean up the front garden.... never once did they say "what can we do?" or "call us if you need something"... who has time to call?! I started calling them my fairy god-cousins and will always always be grateful not only for the help but for the fact that they just DID.