At A Crossroad And Broken

[SLAUGHTER1555]

Hello Cals and Pals that may be reading its been awhile since ive been here for a lack of a better word hope everyone has been well.

So much has happened since i was here last, i wish i could say for the best but its all the opposite. My Pals has had some slight physical changes but most things are the same. His hands has curled up a lil so he mostly uses his pointing finger and thumb. But my physical strain has become extremely taxing smh. My back is broke and i dont know how much longer i can do this myself.

There is no help where we live in Butler County they say the 2600 bucks he get a month is too much income to get help crom the state. Medicare only pays for 1hr of bathing and it takes longer and my Pals is a 2 person assit. They dont and wont send 2 ppl to the house. One thing i am learning is you can end up in this thing alone for sure. Some of his kids mainly one who i thought would have been more invested in this is so far away in What his dad is dealing with but i guess everyone deals in there own way.

So here is my crossroad im currently at, i feel like physically i cant keep caring for my Pals i need help it has gotten so hard. I reached out to our ALS person and she really helped and gave me a solution and that was to put my Pals in a care facility i which i swore never to do. Ive worked in these places before and they can be horrible. But what choice do i have?

I have been struggling with this for the last 2 weeks. My Pals is totally against it but he is not the one hurting. We went to our ALS clinc appointment on the 16th and we were there crying, he feels i will leave him or start out coming and then slowly slack off. I tried talking to him hoping he can understand a lil that its not possible for one person to handle him. I worry how will i be able to shower him or turn him. Lately my back has been hurting and giving out more.

Im 4ft11in he's 6ft4in 217lbs of desd weight its physically killing me. But at the same time i feel bad for even considering any if this but i have no choice i am at the breaking point of caring for him.

We are working on moving back to Hamilton County cuz they have more services that can probably help us. Specially with transportation like using the Access buses or public transportation. But if im struggling now with him how is moving going to be any different.

I cry every time i have to think of this im so tired physically sometimes i feel like idk i would say giving up but i dont feel like giving up but that I'm just tired and need a time out. Doing this 24/7 its exhausting.

Then i start to think who care for him like me and do this and do that smh ugh i hate this!! So Much!!!!!!

 

[vltsra]

Slaughter, I'm no expert on this, my PALS is still mobile and self-sufficient, but can you maybe try respite care? If you had a little time off would it help you to step back and prioritize and maybe be able to arrange help. I am worried about the same thing in the future because my PALS is 200 lbs and I am not.

V

 

[Atsugi]

Slaughter, I won't pretend to know the answer. I'll only venture a quick thought. And not a pretty thought. You already know you have to take care of yourself, because if you hurt your back, then how can you help him at all? And yes, I know how hard it is to take any time for yourself at all. My thought is about survivors. ALS will take one of you. Make sure it doesn't ruin you both. i hope someone smarter than I am can come along and talk about a good solid suggestion for you.

 

[lgelb]

At the risk of repeating myself:

Why are you lifting your husband using your own strength?

I cared for my 6'1" 250# husband using a Hoyer lift on carpet; I weigh half that.

You are obviously talking with the ALSA and they do have loaner lifts, or you've had three months to get one otherwise since you last posted. You do have a power chair, right?

The year after Larry became lift-dependent, our son came to live with us. He weighs less than I do. And in my experience, only one person can push a lift at one time. It is helpful to have another person around for positioning and helping, but many CALS here don't.

We had part-time students doing passive exercise and light massage a couple of hours most days, to lift Larry's spirits (he loved interacting with them), more than anything.

Larry could not be rolled. He was completely lift- and power-chair dependent for four years. He had 24/7 BiPAP for a year, following decades of nightly use. That is by no means the longest tenure with those devices here. Our shower in a rented apt. has a threshold. We bought a very expensive chair to get him over the threshold, that gave him another year of showers. After he couldn't tolerate the shower chair any more, it was bed baths.

I feel for your pain, but it appears that you haven't gotten the equipment you and your husband need to even try to both live at home, and I don't know why.

Best,
Laurie

 

[pittsburghgal]

I am sorry if I can't be totally supportive of you. Yes, it is very hard to be a full time CALS and I speak from experience because my husband is unable to walk, has no use of his arms or hands, can not eat or drink and has difficulty speaking. I am his sole caregiver.

Of course you can't lift your husband and you should not be trying to do so. This is unsafe for him and you. As Laurie said, you should be using a hoyer lift. The ALS Association can lend you one and instruct you on how to use it.

You say your PALS is totally against being put in a nursing facility but "he is not the one hurting". Do you honestly think he will not be emotionally hurt by being put in a home against his wishes when you have not even begun to utilize equipment that could make it possible for you to keep him at home?

I'm sorry if I sound callous but I think there are steps that you could take to permit your husband to stay in his home at this point if that is what you really wanted to do.

 

[SLAUGHTER1555]

Thanks for all your thoughts and comments and i do have a hoyer lift that i use it is extremely difficult pushing it across carpet in this aparrment. The task of getting him in and out our 2011 Buick Lacross is a site to see even with a transfer board. Oh and btw we wont even have a car in the next few months because we are so in debt so I wish we had ppl to come by and help and get some of the services i read most ppl on the forum get but we dont. And he is not a Vet most ppl ask that otherwise he would have no trouble getting any help.

Here in the part if ohio were in because of his age (60)and income there is limited help from agencies you have to be 62 or 65 for most of the help that is offered. His income pays the main bills and i cant work because i have to take care of him so there is no extra money. I dont qualify for respite care and if i want it i have to pay for it. He would have to be in hospice to get any of there services but he has no major issues with swallowing he does not have a feeding tube or on any life sustaining devices.

I stay in contact with our ALSA on a regular basis and she too explained that the situation im in is what happens to most ALS families. So what she offered was a list of nursing homes and how to shop for them, legal aids number to get a medicaid lawyer to fight for that because medicare would not pay for his care in a facility.

I dont have a problem caring for him i already had a bad back and day in and day out bending over trying to wash him up as he sits on the shower chair and drying him off and then having to lay him down and roll him to put his clothes on every day is sorta taking its toll on me. When it gets too much i do give him a bedbath but any form of bending hurts my back so it doesnt really matter.

He's getting to the point that showering is becoming difficult because he can barely sit up. If he leans over he keeps going. But he is so stubborn he wants a shower ugh sometimes i find it hard to say no or we fuss when im trying to explain today i cant. I feel like sometimes inneed to do what ever he wants are needs but i cant ignore inhave needs and rights too sometimes its just hard if i have to be stern

I took all the information from our ALSA person but i havent made any calls to anyone about anything, I cant bring myself to do it. It seems wrong and i feel like i am hurting him if i do. The thought of leaving him with strangers over night is unbearable i cry every time i think about it. But man doing this is ruff! It will be a year May 15 2016.

Sometimes i think im still in shock and im anger at all this! I miss my work i miss providing for my 11yr old daughter, doing things with her! But instead at 42 im home all day cooking cleaning washing emptying lifting moving changing something!!!! No time for me no life no friends. I have never been so surprised to see how many ppl are not around when you need them. Not even his own kids are really here.

Sorry if this sounds like im beinging selfish cuz right now i guess i am . Im praying for help not to complain outwardly or internally. I reminded myself last night when at 11pm i had to change his condom catheter and wash him up when i was ready to sit down that all this is part of saying I DO! I wanted to be married and hello this is marriage!

I reminded myself that those vows said before God and family i am now being held to them and that whether I like it or not i have a responsibility to my husband. This thing is hard and i dont know how long i can do it but as much as God gives me strength to care for him i will, even as bad as it hurts.

Thanks again for listening and allowing me a place for venting

 

[pittsburghgal]

I understand your situation better now and a lot of what you described I am experiencing too. I think you need someone to help so you can at least leave the home for a few hours. Do you belong to a church that you could ask for volunteers to come and help for a few hours? Does your husband have any friends you could contact? I truly understand the isolation you are experiencing.

Sharon

 

[gooseberry]

If you are in contact with alsa, they should have respite grants available. Ours does one thousand dollars. I know what you are experiencing is hard. Now is not the time to be proud...what I am saying is if a friend or church person is willing to help let them. They can bring a meal, do laundry, clean..anything that can do...walmart has a grocery shopping service. You place your order, they shop for you, you go pick it up. It is already rung up.

I wouldnt worry too much about cleaning on your regular schedule. It is virtually impossible and you will make yourself crazy

 

[DreamsEnd]

First you should call the attorney that the ALS ASSN told you about. There should be more help for you. Second, call and interview local hospice services and they can send CNA's to do your husband's showers. Ours offered to come 5 days a week and it was a huge help. They also have chaplains, provide medications, social workers, nurses, etc. anyone can receive hospice for free with a terminal illness.

I know you're exhausted and depressed, so you're not thinking clearly. Please listen to the experienced cals on here and take some action. I believe you can keep your husband at home for a much longer time.

Sherry

 

[affected]

I would be registering with hospice and getting their help at home. So sorry it's like this for you.
Maybe even phone a local church and pour your heart out and see if they will help? They are supposed to be about good deeds so they may start a meal roster, or shop for you or something. Don't feel too proud to make some noise now about needing help!

 

[Drewsmom]

We already have hospice and it is not enough. I work full time and have two grade school children at home. I will not be able to continue to be a caregiver much longer. I know what my limits are and I will not allow ALS to destroy me or my children as well. We do what we have to do to survive.

There should be no shaming of anyone on these forums who have reached their limit. Yes, we are all walking the same road, but we are all wearing different shoes.

 

[gooseberry]

Drewsmom, We do all walk a different road, with different challenges, with different results. I had to protect my 13 yr old son in many different ways. He couldnt cope with his dad's service emotionally so he stayed home with my sister. Boy did that get comments. You have to do everything you can to give your kids a normal life while being a caregiver. It is a very difficult road and very different from many cals and pals. In the end, I allowed certain things with my son so he could stay emotionally stable. Family can think whatever they want . They arent living your life 24/7.....no one is but you.

A couple hours every day may seem like a lot but really isnt when you see all that is needed. Be as kind as you can be to your kids, your pals, and yourself.

 

[Atsugi]

"Be as kind as you can be to your kids, your pals, and yourself."

Mega dittos.

I heard this once: "It's nice to be important, but it's more important to be nice."

Before and after ALS, I would often remind my kids to be nice to each other, because one of these days, all you're going to have in the world is each other. Must have worked, because today they are really very loving to each other.

 

[poppies]

When I read your post I can feel your exhaustion and desperation. Don't give up on yourself, trust yourself to make choices that will be right for you both. It is so hard when you get advice from all directions but nothing feels right for you. You have done an amazing job coping until now. It definitely sounds like time to make some changes. A move nearer to accessible services or finding a good care facility where you can visit every day or finding someone in your neighbourhood to come in and give you a hand (like the other said, perhaps a local church may have a volunteer or two). These are all choices you have. Unfortunately when we are burnt out we can't see the wood for the trees. So it sounds like respite care would be a great idea if you can organise it. A few days of sleep and self-care so that you can make the decisions that you need to move ahead will be better for both of you in the long run.

 

[lgelb]

Slaughter, our entire apt. where I wheeled the lift (and the 250# guy in it) is carpeted, so I know it's hard. Make sure the wheels are clean and of course get duct tape to smooth out any thresholds.

Don't bend to give bed baths or dress him -- raise up the bed. If dressing him is too much and you're not going out that day, don't dress him, at least from the waist down. Use a poncho on top, a blanket in his chair over the lower half.

Be as frank with him as you are with us, in the right moment, and I think you can come to a better shared understanding of what your limits are. That's really on you; he can't read your mind.

Best,
Laurie