How do I say it?

[Cammarak]

Hey, everyone! So much has changed for me in the last year--had to "retire" from my job of 27 years (I'm on disability--ugh!!!) and I've been trying to channel my energy into caring for my family. My kids are 21, 19, and 17 and don't NEED me like they did when they were children, but they appreciate having me around whenever they need something, or a mother's support or advice. I try to take care of the house, our pets, feeding the family, paying the bills, etc, but I'm getting to the point where I can't do things anymore. I lost the use of my shoulder muscles, and although I'm still "strong like bull" I'm struggling with everyday tasks. We want to keep this house until my 17 yr old graduates next year, but I'm increasingly unable to care for things.my plan is to buy my mom's house outright so we have no mortgage. But my husband doesn't want to do this. I feel we have no other choice. My kids all work and go to school full time and I don't want to put more on their plates. How do I convince my husband that I need this, and also that I'm moving into a phase where I'm becoming more "disabled" and need help. He is the greatest guy in the world and works hard to keep me included in the world, but I just don't feel like doing anything.

 

[billbell52]

I understand how you feel. I felt that way about 8 years ago. I've had Bulbar PLS since 2003. My balance started to go out in 2008 and by 2009 I was using a walker. I went on medical leave in 2009 and shortly after started using a PWC. My wife really picked up the slack and was doing stuff I normally did. I wanted to move to a small condo but she wanted to wait for a few years. I think she is almost ready to move.

 

[Cammarak]

Yeah, I want to move to afford things now that I'm not working--like a house cleaning service, for one. Plus, oddly enough, my legs are still working well. I fall occasionally but can't use a cane or walker because my neck, shoulders and arms are deteriorating. To look at me you'd think I was the picture of health, so I feel guilty and useless admitting I can't do things I've always done around the house. Short of taking to my bed and never getting up again, I don't know how to convince them all that I need their help.

 

[Vincent]

Have you tried "I need some help?" In previous generations we helped family. My father quit high school with months to go because his father was sick and they needed money (he finished with night school), but this was not considered burdensome. It is just what you did. For some reason asking kids to contribute in any way is unreasonable today. Growing up in a strong union house, I learned that nothing changes if everything gets done. So my advise is to start letting things slide. Once they discover some of the things you've done aren't happening, I'm guessing the conversation becomes easier.
Vincent

 

[ShiftKicker]

I'm in the early stages of this myself and dread having this same conversation with my family. It's particularly hard if you are the "care" giver in the family. People are used to receiving care and help from you, and are not in the habit of paying attention to your needs because you're the mother, and that's your role. Your role is now changing to one where you need someone, or several someones, to take care of you. If you still look healthy and able it would be hard for people to change gears and start thinking about things seriously. It must be very frustrating (actually, I know it is!) to feel like you have to assert yourself- especially if you were a do-er and chief emotional support over the years. I empathize with you and hope you are able to get your needs met.

Are you able to explain what your concerns are, and ask your partner what he feels a solution would be? If that conversation has happened with no solution, would it help to have an occupational therapist come over to your home and go through and explain what issues will arise as you progress? It might help to hammer things home if a "professional" outlines the arising issues and what will need to be done in the coming years. Likewise if you go to an ALS clinic- having a team of medical/ rehab people tell your partner that Things Will Get Hard(!) might give him a kick in the pants to listen when you say something.

I'm sorry this is adding to your stress.

 

[lgelb]

Here's a fear factor strategy:

Call them all in, direct them to the largest monitor, play one of the YouTube vids showing a PALS who's completely dependent. Say, "We don't know if I will end up like that but if it's in the cards, I'd like the opportunity to head into the sunset with our family under the least stress and most togetherness that we can have. And so..."

Best,
Laurie

 

[Cammarak]

This is all great advice--thank you, and of course I have told them all, but it's like they just can't process it!! In reality, I guess I was just having "a moment" there--haven't been on here in forever and then I came on just to vent (or whine like a toddler)!! All things considered my life is pretty good--my kids are doing well, and my husband is working hard to keep us afloat. Things will be good for awhile yet!

 

[NanJay]

I don't get on and post very often, but I think we can all relate. I was a triathlete, and actually pretty good at it, until the wheels started coming off about 4 or 5 years ago. So of course I was able to handle everything. Kids, house, gardening, schlepping bag after bag of groceries up from the garage.
It's been a slow progression (I was finally diagnosed with PLS in Nov. 14) and one of the hardest things is admitting when you need help. I would stump around carrying lighter and lighter bags; my balance is poor so I tend to lean and hold on to things. But when you do ask, be specific. I find that I have to say-would you bring X up from the basement? Or, please help me empty the dishwasher. As time goes by I need more help. My kids are freaked out sometimes (they are 20, 21, 25 and 26) but they'll help if they are around. It's about time for another family meeting though-I fell in the bathroom Saturday and was on the floor for 40 minutes before my husband came in and got me up. Compression fractures in my spine. They'll heal. I haven't really told all my friends what's up, but most of them know. And they are always willing to help when we are out. My issue now is that I should be using a walker but I just can't bring myself to. How will I get in and out of places? Doors have to be wrestled with. But I know I'll fall again.
So it's a work in progress, to know when to ask for help and how...good luck. Your family surely loves you and will help-the hard thing is wrapping your own mind around it. I wish I could help.

 

[affected]

Nan wrestling a walker has to beat an even more serious injury or death from falling. Imagine how that would affect your children and partner for the rest of their lives?

Please, for their sakes if not your own, see safety as a way of fighting the beast!

 

[lgelb]

Nan,
Please do consider a rollator with big wheels and a good seat. If you stand outside a door leaning on it, likely someone will open it for you.

 

[NanJay]

:|I know that most people are so good about offering to hold the door for me, and I now have a folding walker in the back of my car. I might actually go use it today...it is to the point where it is scary to be wavering around with just the cane.

These transitions are hard.