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Reading through this just breaks my heart. My Mom suffers from a form of Parkinson's, called Lewey Body Disease. I live 1200 miles away, and our sister (3rd in the family) takes care of Mom. I am just starting to venture in this forum, because I have so much guilt on being so far away that I can't physically help Mom or my sister, H. But I can see how caring and supportive and compassionate all of you are, so I will be back here again.
I just want to let you guys know that my thoughts will be with you tonight, and say thank you all for your honesty. It's really good for me to know what you're going through. I want to have more empathy for my sister, H. I want to know what I can do from so far away. And reading what you guys have written here is so very helpful...I'm a bit overwhelmed. So I wanted to say thank you.
I am glad that you found this thread....I am sure you will find it helpful and that you will find your own way to be supportive here and in your own family.
Good morning dear friends, caregivers and supporters!
Good to have you stop by Starr and hope you continue to visit. Everyone here is full of wonderful ideas and encouragement. And as elston said you will find you own way to be that help for your mother and sister. Support is one of the biggest things we caregivers need and positive input.
The people who come to this thread are my rock! They hold me up in hard times--encourage me and just make me feel like I am cared for and a worthwhile person---I think it helps many who are in my situation who come here and read to know others care. Sometimes that is easy to forget!
I think all the driving is my job now...DH said his neck hurts to bad and holding his head up is just getting to hard. I had decided to let him continue to drive as long as he had good use of his legs and at least his right hand was doing pretty good---he has bulbar ALS so it's his throat, lungs and neck that are in the worst condition. But the ALS appears to be doing a more rapid progression now and there are signs of it in his legs and arms and hands now.....sigh.....and because he is a very responsible person I knew he would let me know when he felt he was not totally safe driving. I think that time has come because he has not driven the last 2 times we went to town. That was the one freedom I didn't want him to lose but I suppose it was going to happen eventually. At least he can still ride and get out---I fear when he loses that ability things will really nose dive. I am considering seeing what kind of money I can get for my truck---everyone loves it and it is pretty with low mileage and maybe get a used wheelchair access van. I can't afford any kind of payments so I'm going to be doing some praying on this one! At least with a van I know DH will still be able to get out of the house and I feel that is a very important part of living. My DH's best friend from his childhood, the man and his wife that always stop by 2 times a year when they go from Florida to Michigan are going to be coming by in May---I am really looking forward to that visit! They are our angels!
cyn glad DH knows when it is unsafe and stopped instead of putting both of you in danger. Have you heard anything from the NASCAR folks? Any grants available to put a w/c lift on the back of the truck?
Starr.R welcome I hope you can find some comfort & peace here as you walk your path.
Reading through this just breaks my heart. My Mom suffers from a form of Parkinson's, called Lewey Body Disease. I live 1200 miles away, and our sister (3rd in the family) takes care of Mom. I am just starting to venture in this forum, because I have so much guilt on being so far away that I can't physically help Mom or my sister, H. But I can see how caring and supportive and compassionate all of you are, so I will be back here again.
Ahh Starr,i am sorry honey ........ Try not to feel Guilty,its not really your fault you live so far away.... Its the thought that matters and we can see how much you care!!!!
cyn glad DH knows when it is unsafe and stopped instead of putting both of you in danger. Have you heard anything from the NASCAR folks? Any grants available to put a w/c lift on the back of the truck?
Starr.R welcome I hope you can find some comfort & peace here as you walk your path.
We did get a lift for the truck but it was the kind you can't use the back of the truck anymore because you can't open the back plus DH's wheelchair didn't fit very well on it and we would have had to do all kinds of alterations to it. With the rain here in NC it is also hard to have your wheelchair on the outside without protection---just more problems then it was worth. I did get a loan for a smaller kind of wheelchair I can just put in the back of the truck without any power but he said it's uncomfortable so we haven't even tried it. No, haven't heard anything from NASCAR and probably won't. My DH is to proud to let me contact the right people in NASCAR about help and since his son is still involved with them he is really careful about who or what I say to anyone in that organization.
Yeah TL...that would be nice if DH's son would visit--but he said we should have moved closer to him after all he does live 48 miles away. It's just the way he is--always has been really so I can't expect him to change now. Sadly his son could help a lot with the sales of a lot of the transmission parts we have in our garage...he knows what they are and the people who might be interested. He doesn't want to help so we will make it without his help. I think once we get the building empty for the most part (there is a lot of money in parts in there but we'll probably end up selling them for very little) anyhow the building itself offers a type of income for me---it is even insulated. It's a huge building that we had built for storing out things from our shop in CA. It has no leaks and as I said it has a 10ft chain link fence all the way around it so it is secure. It's just one idea. I have been listing items up here on city data and also looking at other ways to list large items that need to be picked up. Been busy.....
Sure sounds like you have been busy! So sorry about your DH's son apparent attitude towards you guys, seems incredibly selfish, but I know we have family members who would be the same way, and I guess it's fairly common.... guess it's a waste of time to think you could depend on any support ( even moral support) from them... so you move on and count on the folks who ARE there for you...
Your building sounds like it offers a lot in the way of great storage- could be very much in demand when the time comes....
Best of luck with that listing, hope things move well, and at the risk of sounding like a broken record-broken record-broken record, take care of yourself, and be good to you!
Now that you have the peg scheduled you can breathe a little easier yourself. You know your neighbors are going to be looking out for your fur babies and getting your yard work done. Just try (and I know it is not as easy to actually do it - rather than someone telling you to) to day one step at a time, one day at a time.
I have a doctor's apt today for a dermatologist to look at my arm where I hurt it in the ice storm. I do not feel like it is healing properly, so I want them to look at it and tell me yay or nay! Anyway, we're having another pretty day here then rain tomorrow.
Hope everyone who stops by will have a good day and reflect on something they are thankful for. Other than having caring people who I've never met send so much love and caring for people they only know online, mine is waking up, having breakfast made for me, reading the newspaper and being able to get out and about.
A couple days late in the response ( been busy muhself, LOL). But just hope your derm appointment went well and they can come up with something to help your arm heal- is it a skin thing, or possibly a soft-tissue injury or tendon or ligament tear? I know those things require rest to heal, and it's hard to get that rest.
Thanks for your message, it's well taken. I figure we have lots to be thankful for, and I wake up grateful every day for the blessings I have been given.....
Good morning dear friends, caregivers and supporters!
Good to have you stop by Starr and hope you continue to visit. Everyone here is full of wonderful ideas and encouragement. And as elston said you will find you own way to be that help for your mother and sister. Support is one of the biggest things we caregivers need and positive input.
The people who come to this thread are my rock! They hold me up in hard times--encourage me and just make me feel like I am cared for and a worthwhile person---I think it helps many who are in my situation who come here and read to know others care. Sometimes that is easy to forget!
I think all the driving is my job now...DH said his neck hurts to bad and holding his head up is just getting to hard. I had decided to let him continue to drive as long as he had good use of his legs and at least his right hand was doing pretty good---he has bulbar ALS so it's his throat, lungs and neck that are in the worst condition. But the ALS appears to be doing a more rapid progression now and there are signs of it in his legs and arms and hands now.....sigh.....and because he is a very responsible person I knew he would let me know when he felt he was not totally safe driving. I think that time has come because he has not driven the last 2 times we went to town. That was the one freedom I didn't want him to lose but I suppose it was going to happen eventually. At least he can still ride and get out---I fear when he loses that ability things will really nose dive. I am considering seeing what kind of money I can get for my truck---everyone loves it and it is pretty with low mileage and maybe get a used wheelchair access van. I can't afford any kind of payments so I'm going to be doing some praying on this one! At least with a van I know DH will still be able to get out of the house and I feel that is a very important part of living. My DH's best friend from his childhood, the man and his wife that always stop by 2 times a year when they go from Florida to Michigan are going to be coming by in May---I am really looking forward to that visit! They are our angels!
I remember that you mentioned your DH did the driving, and you did the looking behind you as he did, and I have to admit to cringing a little bit at the thought, but figured maybe the traffic wasn't all that heavy where you are and it was ok. You'll both be safer now that you're doing the driving, if the traffic up there is as crazy up there at times as it is in this neck of the woods ( unpredictable drivers who don't think traffic laws apply to them), it's hard enough to drive when you have full use of your faculties! I can only imagine how hard it can be to drive if you don't.
As hard as it is, Cyn, you're doing a great job of thinking ahead, I know you have to, and it puts you in a good position to take care of things as they come up instead of being blindsided by something you didn't anticipate. Being able to do so is another demonstration of the strength and courage you show every day... and once again, it's inspiring. ( even if it is just ordinary every day for you!).
Had to laugh TL...nothing is an ordinary every day thing in my home anymore. Nothing. I am faced with new things to face everyday it seems. I really appreciate and thank you for making me feel like I am strong and doing a good job but believe me if I had a choice--well you know. Courage has not been one of my better assets in these last few years but I am working so hard on it.
Thank you, everyone,, for your kind welcome. Makes me feel wanted.
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I had decided to let him continue to drive as long as he had good use of his legs and at least his right hand was doing pretty good---he has bulbar ALS so it's his throat, lungs and neck that are in the worst condition. But the ALS appears to be doing a more rapid progression now and there are signs of it in his legs and arms and hands now.....sigh.....and because he is a very responsible person I knew he would let me know when he felt he was not totally safe driving. I think that time has come because he has not driven the last 2 times we went to town. That was the one freedom I didn't want him to lose but I suppose it was going to happen eventually. At least he can still ride and get out---I fear when he loses that ability things will really nose dive.
At least with a van I know DH will still be able to get out of the house and I feel that is a very important part of living. My DH's best friend from his childhood, the man and his wife that always stop by 2 times a year when they go from Florida to Michigan are going to be coming by in May---I am really looking forward to that visit! They are our angels!
