Struggling with the basics.

[CoachMeg]

Good morning friends - Today has been a day of reflection. Although in the grand scheme of things, we are early on in the disease, I am struggling with the best way to help my husband.

I worry constantly that he is overdoing it. Whether it is walking, climbing stairs, or even just standing in the kitchen too long trying to cook. I cannot imagine not having the ability to do the things you want or need to do. I believe that this weekend we saw a progression in that both legs are so weak. Of course, it is worse after being up and around all day.

So here is my question. How do you care for our PALS in a way that isn't nagging? I want him to take it easy. I want him to expend his energy with us, not at work. And I acknowledge that by agreeing to less work, etc. he feels like he is losing a little bit more.

Does any of this make sense? Is it just a process that all of us have to go through on our own time?

Apologies for the rambling.......just having one of those days where I long for our old normal.

Love and light
Meg

 

[Katie C]

It makes sense and I totally get where you're coming from and eventually what I learned with Glen was to just give up in some areas and in others, if I had to nag, I nagged. So... "I wish you wouldn't take such long walks you get way to tired" eventually stopped. When it came to safety issues like eating.. I would literally sit here and say "put down your spoon" after each and every bite if I had to to make him slow down.

 

[abbas child]

Good morning friends - Today has been a day of reflection. Although in the grand scheme of things, we are early on in the disease, I am struggling with the best way to help my husband.

I believe that this weekend we saw a progression in that both legs are so weak. Of course, it is worse after being up and around all day.

So here is my question. How do you care for our PALS in a way that isn't nagging? I want him to take it easy. I want him to expend his energy with us, not at work.
Meg

Dear Meg, we are all different as to why we overdo. In my case, I pushed myself well past my limits in order for it to be obvious I was working as hard as I could, and not acting like a slug. After falling numerous times, a couple of which were truly dangerous, I quit, and got the walker, soon followed by a power chair. I'm not at all sure I "needed to" push like I did, but I felt that I did.


So, the question, I suppose is... is your husband pushing himself because he needs to prove to himself he's still able (or simply because he enjoys the tasks), or in order to not "look bad" to others? If it's the first, please just encourage him that he'll likely remain in the action longer if he rests when he needs to. And should he have a bad tumble, breaking something, it will likely do harm of a lasting nature. But if you suspect he's trying to do his part in the family in an effort to show his perseverance to you or to others, you'll need to be straight with him and tell him nicely to please sit down, as you want him around with you to spend time with you.


Best wishes,
Ann

 

[smwelder]

Hi, coming from a pals view point, I realized that there really is not any over doing things. Either my body allows me do do things or it does not. there's no switch. so to speak that stops and starts things, its a gradual loss so the slowing down comes that way to. the thing that gets scary is the walking. because thats the one thing that gets dangereous. well that and cooking. if possible be near him when he does these things. like i stated earlier things come gradualy. as for me it got to where i was no longer able to do things so it was easier to accept it. your husband like others here know when we can and cant do stuff just because we cant. hope any of this helps.

Wife's point of view, as a caregiver- I understand where you are coming from, but know too it is hard not to worry about our husband. I too try not to tell my husband to take it easy. Sometimes I just look at him and can tell he is just not able to do something and other times I ask if I can help in any way. It is very hard watching him go through this. My advice, hang in there and let your husband try to do things best he can. If you notice he is struggling, ask if you can help him at all. I tell mine it is up to you to at least try and see what you are able to do. I want him to make the best out of what time he has with us. Enjoy every moment you have together and make the most of it.

 

[KC2U2]

At my first clinic visit, the PT said something that resonated with me:

"It is about completing the task, and if a tool will help you do it better, faster and with less effort, why not use the tool?"

I has spent many years in my management career urging employees to work smarter, not harder and that's basically what she was saying to me. If he likes to cook, buy a bar stool for the kitchen where he can still stand but take some of the weight off of his legs. I had to give up using my chef's knife to chop seasoning and use the food processor.

For walking, my wife's boss bought me my cane, it's a really cool looking hard carved model with a brass nob at the top(doesn't look like an old lady cane). I think the fact that it was a gift from a friend and was cool, made it easier to accept and I kinda felt like I at least had to try it. I was still working and just brought it with me, if it was a busy day I might use it once or twice a day, now the cane and AFOs keep me mobile for short trips and familiar places.

Everybody is different, but hope some of this helps!

 

[LornaDoone]

I would most certainly nag a little. It's your right as wife. If he did not have the disease, you'd most likely be nagging him about something else anyways. he he. Sounds silly I know. I would not nag too much though. If he wants to overdo it, let him overdo it. Maybe having a talk with him about it and how you feel. And then let it go. I think it's a process they have to go through. It could also be a means of adjusting. He knows he will not be able to do certain things much longer and he's trying to do all he can while he is able.

One of my relatives would totally overdo it where it wasn't safe anymore. And that is another whole thing. Clearly if there is danger of injury, then you gotta put your foot down. If not, then pick your battles.

I would recommend you hooking up with a social worker or counselor. Someone you can touch base with as these issues come up. They may be able to give you some guidance on how to approach certain challenges.

oxox

 

[LornaDoone]

I wanted to add to not be afraid to go behind his back where appropriate. For example: My pals was totally overdoing it with talking. She is having advanced breathing problems now. Talking too much causes her breathing to be way more laboured. And when this happens she swallows air when she's talking. When that happens, she gets gas pains in her stomach in the evening. And from there we have all sorts of problems.

So, she has these meetings with friends from a social group and the meetings are way too long for her. I mentioned something to one of the ladies about our issue with these meetings. They have made the time shorter and have adjusted their meetings to be less singing and poem recitals and other stuff.

So, if it's appropriate feel free to speak up behind his back. he he. DOH!

 

[tdamess]

i was same way with my son but , my hardest time was when to step in , when i seen him struggling to open something at first i acted like i did't see it for his pride sake but , in time its become normal and time he could use help but , i didnt catch on till someone near us reached over to do it for him then i felt stupid for not noticing he was opening chips but , stopped and i thought it was because he was talking trying to get to a point , thats when my daughter reached over and open them and i realized it was not because he was talking he was taking a break from trying but , we catch on in time l.. in my mind let him do what he can while he can he will know when to take a break . wishing you the best

 

[CoachMeg]

Thank you all for the comments. I am working to find a balance for all of us. I am trying to find a collabsible cane that we can take on an upcoming trip. I will also definitely get him a barstool or tall chair for the kitchen. That makes perfect sense!

I am so glad that I can ask these questions here.
Love and light
Meg

 

[stephie]

Meg,
As hard as it is to do, I have learned that it makes my life and my husband's life easier if I just let him do what he wants to do. When he fell, I got him up until he decided it was time for a wheelchair. He continued working (against my better judgement) until his company made him quit. The only thing that I have insisted on is ordering equipment before he needed it. All I can do is make sure that everything is in place when he is ready for it. There will come a time when it is no longer a question of "if" he should still do it, because eventually he will not be able to. We CALS are not in control, we are just along for the ride!

 

[Katie C]

We pretty much did the same as Stephie. As much as possible, I let Glen make the calls.

Meg, as far as the collapsible cane.... google "decorative canes" or "decorative walking sticks" and you'll find quite a few.

 

[Twinsmom]

Hi Meg,
I completely know where you are. My husband is still walking, but is using a cane for balance...every PALS is different, but one of the things that has crept up on my husband recently is needing to have some back support for sitting (so the kitchen stool...may want to consider one with a back) I also 'nag' some, but at the end of the day, I try to just remind him that HIS goal is to have quality each day, and sometimes that means choosing less so that he doesn't suffer later. I think Ann's perspective is really helpful. Encouraging your husband to at least understand what is motivating him may clarify his choices each day-and allows you to understand his state of mind.

One of our forum members gave me this wonderful analogy she used and I have since used with my husband.
PALS are given a fixed number of gold coins each day (say 20) that is the exertion of energy...and each activity costs a coin (Getting ready for the day 1 coin...going grocery shopping 3 coins etc...Once the coins are used each day, his body ends up hitting that wall and has to stop. SO...he needs to choose wisely. Sometimes when I see Bucky pushing too hard, I ask him if he "wants to spend so many coins at once". Honestly, it doesn't usually change his mind, but at least it gives him pause so he is consciously aware of the 'price' he is paying.

But, at the end of the day, I agree with Stephie, we are all as CALS just along for the ride and here to love him through his journey. Some days are easier than others. I try really hard to not let my own heartache show itself as anger or annoyance-but...don't succeed so well some days. Just keep loving him.

Trying to live with courage and grace,
Melody

 

[RachelErik]

Hi everyone. I am a caregiver to my long time boyfriend who was diagnosed for the 3rd time in early December 2010. He is still walking with a brace on his left foot/leg, still working full time. He sweats most all the time, the fasciculation's are constant and are worse from around noon to 2 pm. He has been given 2 hours for a lunch break and most of the time he is resting to build energy up for the remainder of his work day. My concern is that we live 6,000 miles from his grown children and grandchildren. He really needs to be living closer to them and we have been offered a place to stay by some dear friends. He does not want to quit working and move. He says he will be poor and won't be able to live a comfortable life. I keep reminding that family, friends and myself will not let him be poor. He is afraid to talk to a social security disability representative. I do have an MDA rep coming in a week, just to visit. His children are arguing that there dad will quit working when he is ready and the other just wants her dad to be close to him. He thinks I just want to move closer to family but it is for him, his family and yes for me. What do I do or say to him?

 

[brooksea]

Sorry about your boyfriend, RachelErik. It may be too soon to discuss giving up his job to move. But if family is willing to help, you will certainly welcome that help in the future.