Somebody please help

[Miss]

We are moving to a different level, and I don't know what I'm doing. Is there no place to get some training? How do I get a toileting sling under my 250 lb. husband by myself? He can't be rolled over, and he can't keep it on all of the time because it causes pressure sores. How do I get any housework done when he needs something every five minutes. He can't move his arms, and it hurts when his hands curl. He won't wear the brace because it hurts. He can still eat without totally choking, so he won't use the peg. It takes over an hour to feed him 1/4 of what he used to eat.

I feel like I am drowning. I have no time for my 16 year old son, and I know that is a dangerous thing. How do all of you handle this? I've been a 24/7 caregiver for over 10 months now. This is physically and mentally killing me. Why do the doctor's act like this doesn't affect the PALS mentally. I barely recognize the man living in my husband's body.

 

[betsy219]

Hi - I can tell you that what you are feeling is normal, overwhelming and terrifying. This disease takes away control from all involved - patients and caretakers. I was a caretaker for my mom last year - She was diagnosed in December 09 and passed away on Aug. 2, 2010. It was the most difficult thing I have ever done. I found that my mom was scared to be left alone and really wanted someone in the room she was in at all times. It certainly starts to feel like the rest of your life is on hold when you are in your situation. But - you have to make some time for yourself and certainly for your son. Has your husband's doctors ever talked to you about hospice - we had a tremendous experience with hospice care both at home and in their hospice facility during my mom's last days. The conditions for starting hospice were not as extreme as I thought they would be. Also - we had home health attendants come to the house a couple days a week which was very helpful. Call in family and friends and if and when they ask what can they do - tell them. I had a a hard time with that. I wish I had just said could you sit here with Mom for a few hours while I run errands, for example. There were many people ready and willing to help but we never reached out to them.

As for your husbands hands hurting and the braces bothering him. The same thing happened to my mom and we ended up rolling thick wash cloths in to "logs" and putting one in each hand which enabled the hands to be straightened out a bit and the fingers could curl around the cloths. This worked well for my mom. Has he had any pt or ot? The therapy really helps with pain in the arms and legs - keeps contractures at bay, too.

As for the sling - you can only do what you are physically capable of doing. Are your door frames to the bathrooms wide enough to get the lift through? There are certainly other things that can be done - bedside commodes/ portable urinals. Use a draw sheet under your husband so it will be easier to move him on the bed or even in a chair . You can buy pivot discs to help get a patient to a standing position and then turned in to a chair. When showers are no longer manageable for you then bed baths work very well. If you were to call your local ALS chapter or your husbands doctors office they may be able to refer you to the right people to help train you to do some things that are new to you.

In our case - I think we went from disbelief to shock to despair to depression in the first weeks and months after my mom was diagnosed. We were all deeply grieving before mama even passed away. But we were there for her as she would have been there for any of us and the lessons in courage and grace that she taught us during her illness were amazing gifts.

Please reach out for help when you need it or you will begin to feel very isolated. I often said the Serenity Prayer to myself while my mom was sick. That and I simply looked to God for the strength to get up every morning and take the best possible care of this remarkable woman and I would ask God to wrap his arms around her so that in her darkest moments of fear she would know that she would be okay.

My heart breaks for you and your family. Know that you are in my thoughts and prayers.


Betsy

 

[Danijela]

We are not at that stage and I can not offer practical advice about using a sling and so on. But I understand about not having any time for anything else but caregiving. You need to communicate to your husband about his needs as well as your needs. Some kind of routine usually works (knowing your daily routine in advance). As for curling hands and not wearing the brace...well, they will hurt for while until they are stretched, then the pain will go away. My partner wears splints on his hands to stretch fingers during the night. After several nights of consistenly wearing them the pain goes away. But you need to build the time gradually, 1 hr, 2 hrs, 3 hours...5 hours, entire night.

I can endure anything physically (lack of sleep, long days filled with chores) but mental pain is hard, the hardest.

Dani

 

[abbas child]

Missy, I don't have a sling I can stay in, but Joel did. Do you have his website address? He never sat or lay on it, but it was around his body. As you probably know, getting the sling on is the hardest part of a transfer.

 

[abbas child]

Missy, I have a couple of sling sites to show products which perhaps can be kept on your husband round the clock. Rather than chance the links not showing, I will PM you.

 

[LauraA]

Missy,
I am almost in the identical situation as you. I am single mom w/ two teenagers caring for my father w/ALS who is completely bedbound. My suggestion would be to get Hospice involved now. They are such a great "team" of people and they will help you so much. they will come in w/different beds, equipment and meds which you never even thought of. With my father, I also have entered into a new "phase" of complete dimentia and yelling/screaming at all hours of the day and night. They now have him on anti-psych meds which have helped a great deal. This disease is such a monster and takes you to places mentally and physically you thought you would go.
Take care of yourself---caregiver burnout is a very real and scary thing. Get a friend or relative in there to give you a break even if its an hour or two. See if you can take your son somewhere he likes to go. Good luck and hang in there---you are not alone!
Laura

 

[Phil's wife]

Missy,

I can't offer advice about slings yet but I am concerned about you not having any relief time. Are there any friends, co-workers, family or church members that you can ask for help? Does Beth have any ideas or perhaps she can come sit with Terry for a few hours a week. It is so important for you to stay healthy and your son to have some time with you too. This disease takes so much from everyone involved. We have found that ativan seems to help the personality changes - well, it keeps the agitation at bay and helps him to rest better. I will pray you can get some help and relief time.

Stephanie

 

[Jellycat]

Missy, I am just feeling for you. The sling and hoist almost undid me totally when I was trying to figure it out. The person who came to demonstrate it couldn't do it herself. That was a very low time. Joel encouraged me to just keep trying and sent me photos of how he did it. That encouraged me to ask for more help. The OT organised for a medical rep to come & demonstrate with slings. That helped us get the most suitable sling. Then a Physio helped me figure a way of moving my mum on my own. I couldn't have done it without these helps and even with them it took me a month before I didnt fall apart every time I tried to use the thing. Missy, is there anyone you could reach out to for that practical help-is there a local hospice who could give you a hand and maybe also talk to your husband. Or maybe come in to do a feed with him? You are doing so much. And it is heartbreaking stuff

 

[Katie C]

Missy, I'm going to echo the suggestion that it is time to get Hospice involved. Among other things, they will provide respite care so you can get a break. Maybe you and your son can go have lunch once a week, have some time together away from the caregiver issues. You really MUST make time for you ... if you burn out, who will be the caregiver?

 

[sadiemae]

The hard thing with our PALS is they want everything done the way they would do it, not the way we do it.

 

[Gentleman Jim]

Missy,

If your husband is a Veteran, start there. Also, get a VA advocate. That does not effect medicare. My ALS friend is 58 last week.
Equiptment and medicine and finally, money. Aid and assistence. You have to jump through some hoops, but I have 24/7 people
coming in right now. We have to pay them, but am waiting on the check from the VA.

We do use the bed pan. Transfers are done with the sheet like a hammock. One picks up his feet and I do the head. We swing
him into a chair for several hours a day and onto a fresh sheet. Back into bed and remove yesterday's sheet. Yes, it is me and
a female. We have skilled home health care paid for by medicare. But, there are evaluations that must show progress. Sooner
or later we will loose them. A terminal diagnosis is needed for some of this care. But, you will learn to be patient.

You are doing all you can do, and then some. One day at a time. Inch by inch is a sinch. Yard by yard is hard.

There are no, I repeat no easy answers. These people here are wonderful, experienced and loving. God Bless you All.

Jim

 

[brooksea]

Missy, can you talk with the clinic and ALSA about all of this? The nurse from our local ALSA tried to explain to my husband that the things she was suggesting when she came to our home, were not just for his benefit (he objected to some equipment), but really for mine. She went into caregiver burnout and he drifted out of the room, saying he understood. Maybe if he heard it from a 3rd party, he would listen just a little (a little is better than nothing, as is our case). I know this doesn't address the sling issue and I don't have to deal with that yet, although it is fast approaching. But, the ALSA should have a nurse that can show you what to do.

My husband can barely use his hands and arms, let alone chew food. It took him 2 hours to feed himself last night and he started eating a pasta salad at 9:30PM. I can't imagine having to sit there and feed him for an hour as you have to do with your husband! I've tried to persuade mine to use the formula and just eat the fun stuff, like pies and ice cream. Sigh...

 

[Claire]

Missy, I was in your shoes several months ago insofar as trying to manage transferring my husband who was approximately 230 pounds at the time. It's not easy,but it can be done. First thing - get a back brace and put it on before you move anything. Call up your county and ask them to send someone to teach you how to transfer. Once I was shown the how, it wasn't so bad (bend hubby's knee, bring same side elbow across chest, and pull toward or push away - and it actually works) Then have the sling folded in half, and stuff one half under him, then go to the next side. I use the hoyer lift by myself and was thoroughly intimidated by it when it was demonstrated at the VA - and I was told that two people were needed to use it. Well, guess what? I'm only one person - and after some practice, (and my hubby's rear end hanging precariously low on occasion) it is no big deal now. I use it to transfer him from bed, onto the toilet, etc. We got the U sling so that I could pull his pants down while he's suspended in the air. Trust me, you will get the hang of it. I am so sorry that you have to go through this with a young son. Our girls are grown and on their own. God must have a special place in heaven for women like you who are balancing so much. You do need time away - and bury the guilt.
Bless you - and God bless us all.
Claire

 

[Miss]

Thank you everyone. In my darkest moments, I know I can always count on you to help. I do think we need a U sling for toileting. That is one of the problems. I've had 3rd parties talk to my husband, but he just doesn't or won't hear it. In his mind, I have 40 more years to live. I'll get over any damage (mental or physical) that is done to me. We had an ALSA caregiver's support group meeting. As always, it helps hearing that the other women are dealing with varying degrees of the same thing. One family had to send the 15 year old daughter back to the ortho for back injuries. I'm reminded how blessed I am that my husband doesn't involve the children negatively. The meetings remind of the blessings, make me stronger and ready to deal with it again - as do all of you.

Thank you all.

 

[smwelder]

from a pals point i feel for you. i know there are times i drive my wife and children nuts. granted having als cucks. but there must be a line drawn between cargive and wife. and a pals need to realize this fact. not to come across mean but cals need to come out and tell there pals hey my best is not your best . deal with it i beleive if your husband was not a pals you may have put your foot down my wife does when im over demanding. and its ok to say it. just because were sick does not give us the right to be a pain their has to be a you time.