So discouraged I can't stop crying

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HeatherFeather

Distinguished member
Joined
Nov 30, 2014
Messages
284
Reason
CALS
Diagnosis
10/2014
Country
CA
State
Quebec
City
Tiny town w/no stoplight!
:cry: It took 2 hours this morning to get hubby into wheelchair, he's getting weak and so am I. We have had our respite service Mon Wed and Fri and help the rest of the week. I injured my hip and couldn't walk. Got an injection of cortisone after doctor told me I had bursitis of the hip. Better now. But friends are going today and I tried to help Ron this morning and couldn't do it without their help. No one to help tomorrow. I don't know what I'm going to do. I can't stop crying. Friends are still here and trying to console me - I had to take off to get on computer downstairs just to be away. Ron keeps asking me to talk - I can't - he can't understand why... OMG OMG OMG I just want to DIE...go away...whatever...
 
Heather, Is there a psychologist or clinic resource person you could call? The one thing I am learning is I have to take care of myself first so I am able to help Steve. I am so sorry you are having such a tough day. Can your friends stay for a bit so you can get out by yourself for a couple hours? We are all here holding your hand and sending big hugs to you. Steph
 
Heather your concerns are serious indeed.

I hope you have had a good cry and are ready to put on your thinking cap. Do you have any friends that can come and help you tomorrow? How did you go with getting an electric hoist?

What would happen if your hubby stayed in bed for the day? Could you manage him that way?

One of the things you have to really watch is damaging your hip further because the cortisone has removed the current pain. As you know a fall would also be something to avoid.

It seems to me that you need to have help every day now no matter what, and this is not a failing on your part, it is not anyone's 'fault', this disease causes high care needs.

There is no way I could have looked after Chris without equipment, no one should be physically lifting any PALS.

Feel free to PM me xx
 
Heather,
I am so sorry you are going through all of this. I wish I could chime in with some suggestions that would help. I'm not dad's caretaker so I unfortunately don't know as much as the others on equipment and stuff. But, you definitely can't risk hurting your hip worse or injurying something else. Have hubby stay in bed as much as possible tomorrow until you can get more assistance. You got a tv or a radio he can listen to in his room so it can help him pass the time?
Also, don't feel any guilt at anytime for needing assistance. None of this is your fault. The love you have for your husband comes through loud and clear to all of us in your posts.
You are on antidepressant aren't you Heather? Check with your doctor if you don't feel the one you are on is working well. It sometimes takes alot of trial and error to get the right prescription and dosage.
We all care on here so please vent all you want. You can message me on here or f.b. anytime sweetheart. Tillie might be able to give you more suggestions though then me. A big hug to you, Kim
 
Heather, sorry you are having a hard time. But you can and will do this. Try to think as "we"-- Ron will always be part of the equation.
I thought you were dialed into orgs that were going to get you guys a Hoyer-style lift? If no one has one available as a loaner, I would get the process in motion to buy one, however the reimbursement or lack thereof works there. Certainly you could order one on line and get it in days.
It's not going to get any easier. As Tillie says, there's no substitute for that piece of equipment when you really need it, which it sounds like you now do. Don't try any more death-defying feats until you've gotten that going!
Not sure how you are handling things now in bed, but our slip sheet was indispensible as well. We used the SlidEase, 28x72" size, under the fitted sheet, then popped the corners of the fitted sheet when ready to pivot and used the slip sheet handles to do so (a two-person job in our case, to be sure). Even if Ron can be rolled (Larry couldn't), it's good to have just in case for positioning tweaks.
Sounds like you need some sleep, too. If you don't get enough tonight, sort the lift tomorrow -- today -- whatever your time zone is -- and then tell Ron you need a nap--and put some heat on your hip while you're at it. We had several Comfortbags (microwavable heating pads) for Larry, but they work for CALS too, last a long time and are a good investment.
 
Great point on the slip sheets for moving your PALS in bed. The difference they make has to be used to be believed, but don't leave him on it.

We have a company in Australia that sells them called slippery sally, I always referred to our slide sheet as sally as a result and we could giggle about getting sally to help out.

How are you Heather?
 
dang it mod!

I'm going to comb that post carefully for what the trigger was!

Actually I think Max was trying to compose a trigger list at one point ...
 
Thanks so much, you guys, for your sweet words of encouragement and ideas. Well, I DO have a bloody lift. The thing is, we changed from the sit to stand type lift to the hoyer lift with the two slings - one for toileting and one full body. I wanted to try the full body one with Ron still in bed but I guess I didn't position it right or couldn't get Ron up properly even tho it was hooked on correctly (the therapist showed me how to do this when they delivered the lift last week). So much positioning, Ron got weaker and weaker, I was getting more and more discouraged. We took the full body one off and put the smaller sling on and it worked much better but still trouble putting him on the wheelchair, then the popup couch, he was so weak at that point and I needed to do this on my own since I knew I'd be alone the next day but our friends kept trying to help and we were getting frustrated - Ron was barking to move him this way and that way but he meant another way (he's like that) so I just totally broke down and I think I couldn't stop crying for about an hour off and on. Our friends left around 11-ish a.m. and Ron and I fell asleep - he in his popup chair and me on the couch. I slept for about 2 hrs and Ron, about 3 hours then we had lunch, watched TV and vegged, had a small supper, Ron fell asleep on his popup chair around 7 and I fell asleep on the couch around 9 - woke up around 10:30 and I managed (quite easily since both of us were not tired at this point) to get him on the commode and then to bed, both times using the smaller sling. I feel more rested this morning but all night sleeping, I kept getting these Charlie horses in my calves OWWWW.... We WILL be getting home care help for 5 days now instead of the three we were getting (4 hours a day) and after two girls come back from sick leave, we will be getting care 7 days a week (again for 4 hours per day from 9 a.m. to 1 p.m. as mornings are the busiest). phew...

Max, Steph, Tillie, Kim and Laurie - you are all such sweethearts and I am so very happy to have 'met' you here - much love and huggs

~ Heather ~
xoxoxoxoxo
 
Grrrrrr - moderated again - WAAAAAAAAAAA!:confused:
 
Oh Heather,
I wish I had words to actually help... but know that you CAN do this. You are doing it. Keep sleeping when you can. I am so glad that you are getting more help everyday. I know the feeling of 'I can't do this.' But change those thoughts to. I can do this. Get all the help you can, get all the sleep you can. Come here and get all the love you can.
Hugs to you.
Cheryl
 
Oh Heather,
I wish I had words to actually help... but know that you CAN do this. You are doing it. Keep sleeping when you can. I am so glad that you are getting more help everyday. I know the feeling of 'I can't do this.' But change those thoughts to. I can do this. Get all the help you can, get all the sleep you can. Come here and get all the love you can.
Hugs to you.
Cheryl

AW, thanks so much, Cheryl xxoo
 
Great point on the slip sheets for moving your PALS in bed. The difference they make has to be used to be believed, but don't leave him on it.

We have a company in Australia that sells them called slippery sally, I always referred to our slide sheet as sally as a result and we could giggle about getting sally to help out.

How are you Heather?

Tillie

Yes, have one - they're called transfer sheets here and really great. Giggles about getting "Sally" to help out :D

Better today, Tillie - thanks for asking sweetheart xoxo
 
Hi Heather,

As you probably realized by now, I don't come on the forum very often. However, when I do I only read a few post as it's very difficult for me and as I mentioned in a previous post, I read yours and feel like I'm reading my life at the exact time it's happening. This past week has been a week of crisis and daily crying. As I reach out to God for help I wholeheartedly believe the timing of all that's transpired and when I happen to read your post is God's hand at work.

I am so thankful to have this forum. However, I often tend to leave this forum more discouraged than inspired because of all the pain, stress and anguish this disease causes, albeit this is the BEST medium I have found and for that I'm most grateful. I'm grateful to have a bond with folks that sincerely understand a life that no one outside of this disease can even begin to fathom. I am grateful for all the support/guidance/love shared and expressed. That said, I want to thank YOU for sharing your very frustrating, stressful, and heartfelt experience. In reading it I am reassured I'm not alone. And whilst I thank all whom have replied/quoted to you by providing guidance, encouragement, and support (and which I am able to accept on a personal level as well) I appreciate your sincere and candid experience.

And I'm happy to know that after some rest all went well...it usually does.

Thank you...
 
Oh Heather, I'm so glad that you were able to get down to the computer when you needed this group. Such wonderful advice--such loving people--and a book! Max, that was very thoughtful!

The book download leads me to wonder if any of our PALS listen to audio books. I enjoyed them very much when I was driving long distances alone (they really are a solitary pursuit since stopping the playback when someone speaks to you is much harder than just looking away from a book).

Hugs and much love.
 
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