Hospital Bed?

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sarah

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My husband is 26 years old and has had ALS for 4-years now. He cannot move, but maybe a slight movement of his hand or legs and if he is sitting up, he can sway his head from side to side.
About the hospital bed! It is getting very difficult for me to pick him up and move him from the couch to his recliner or from his scooter to bed. His legs just buckle down and I practiclly drag him from those positions. It is very hard on my back and I am afraid I am going to drop him. But he is to stubborn to try anything else. I have asked him about getting a hospital bed, So that I can lower and raise it to my needs. Our couch is low, and kill my back when I am moving him from side to side. I am afraid to tell him that I am struggeling to pick him up everyday. He will see that as weakness in me, and think that I am giving up. I don't know what to do? When do I tell him I can't do it by my self any more? Thanks for listening.
Sarah
 

thomkat

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Hi Sarah-
My husband and I used a Hoyer lift. At first, I was sooooo scared to use it! It looked really complicated, but it's not! My husband stayed 24/7 in his power chair, so figuring out a system for getting the sling underneath him was the hardest part. But after just a few days, I could not believe how much easier it made EVERYTHING. Ours was provided by Hospice, but if you don't have Hospice services, you may be able to get one through the MDA or ALS loaner closets. We also tried out several different slings to find the one that was most comfortable for him and the easiest to use. Whatever equipment you choose, just don't be intimidated by it! I kept struggling to move him by myself even after we had the lift because I was afraid...My back wishes I had used it much sooner!

Kathy
 

sarah

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Kathy,
Thank you for the advice. We do have a hoyer lift, I have tried it, but I need someone else to help. He almost slides out of it, and so I am trying to make sure he doesnt fall out and move it at the same time, that was a bad experience. I guess I could look around and see if there is another sling we could try? Did your husband agree to the hoyer lift? or did you just start to use it? My husband does not like to try new things. It makes him realize he is getting worse. \
Sarah
 

georgia

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Lifts of any kind [ceiling included] are more to save the caregiver if our back goes out we are not any help. You might need someone to care for you also then where would he be.
 

sarah

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Its just hard doing something that my husband doesnt like. I know I need to make some changes on how I am lifting him, but on the other hand, I don't want him to be mad at me. Cause when he's mad, he's mad about everything. I think I will talk to him about all this tonight.
THanks
Sarah
 

thomkat

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Hi Sarah-

We had the lift for several months and I was afraid to use it. But one night he fell as I was trying to transfer him from his wheelchair into the shower/toileting chair. So I had to have a crash course in the Hoyer. It was the only way to get him up off the floor and back in his chair! I called Hospice and they told me to call 911. I didn't have $500 to pay 911! (I have since learned that if they do not actually transport the patient you are not charged! So if they just helped me get him up and back in his chair, there would have been no charge!) Anyway, the fall terrified me so much that I knew that I had to learn to transfer him with the Hoyer.

The harness that he liked best was nylon/coton mesh and had several different "loops" to hook to the lift so that I could make him be sitting more upright (like in a chair) or less upright (tilted)...to solve the "sliding out" problem. I gave him his showers with the harness still underneath him and then transferred him back to his wheelchair and then took the harness out. Since it was mesh, it dried very quickly.

My husband was somethimes reluctant to try new things. But with ALS, it seemed like we would just figure out how to cope with one obstacle and the next day we'd be faced with another one. So, he knew logically that if I was going to continue to be his 24/7 caregiver we would have to adapt and use the necessary equipment. And honestly, once we "got the hang" of doing something a new way, it usually made life easier for both of us. With the Hoyer, it was easier for me to transfer him PLUS he didn't have to worry about falling!

I think that once you figured out your "system", you and he would both benefit.

Kathy
 

quadbliss

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Hi Sarah,

When your husband sees the fact that change is the nature of nature, "living" with ALS will become much easier. Here are some words I typed out a while back when I realized this.

"One of the fundamental characteristics of every object in our universe is change. From the individual cells in our bodies, to the stars that produce and sustain life, everything is in perpetual flux. Nothing stays the same for even one second. If we understand and accept this feature of reality, we will be happier and more content with our lives. If we deny this, or try to cling to the way things “should be”, we will suffer needlessly. This is especially true when confronting a progressive disease like ALS.

Let go of the past and live in the present moment. It is all we really have. The past and future only exist in our minds. The moment we recognize this, we can begin to live life more fully." :-D

Mike
http://mikebougher.com
 

midwestgirl

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Hi Mike,
Your words on change, and adaptability to change, is so true - for everyone, and in any circumstance. Reality is reality, and no amount of fighting it will change it. I am going to type this out and place it where I can look at it everyday.

Unfortunately, we can't "make" someone accept this outlook, as helpful as it would be. I truly believe this, but for anyone who is facing a progressive disease it can be difficult. I wish there was some way my mother would develope this attitude.
 

CindyM

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Hi Midwestern girl. You are right that you can't change your Mom's thinking. But she might be more accepting of her health if she sees you enjoying life with her as she is right now. However, even if she does not benefit from the behavior you model, you will! Regards, Cindy
 

landscape

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Sarah, do you have access to an OT who could come to the house and discuss the need for a lift with your husband?

When (not if) you get back problems due to the lifting you could be unable to care for your husband and your daughter until your back is better. (Back pain can be very disabling.)

To be pro-active and get the necessary equipment BEFORE there is a crisis will make life so much easier, safer and better. It reduces anxiety and improves mood!

How are you managing with bathing your husband now?

Strength can be seen as making the appropriate decisions in regard to what you need and sticking to your plan. It will make life better for all of you!

We have a hospital bed and a twin bed pushed together. So it's like a king-sized bed.
If you have room it's a great option.

My vote goes firmly to track lift rather than the Hoyer-type lift. Do lots of research!

Professional caregivers are extremely careful to avoid injuries due to lifting. And they can be replaced by someone else! You cannot be replaced. Look after yourself (and in doing that you are caring for your family in a professional way) tell your husband ASAP!
 

Citlalli

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Dear Sarah,

I have many things to say and little time so here goes.

Hospital bed

It seems the problem is not just the bed but the couch too. You need to get it higher. We altered the beds legs with wood so it wouldn't be so hard on my back to move him. Later we got a special bed that props up the back ( or legs which we dont use) and also has vibration ( which Andres really loves, he uses it all night) it is not a hospital bed because he wanted something bigger ( full size) and hospital beds only come in twin size. Having a bigger bed is more comfortable for him and easier for me to handle him and turn him around. This is the kind you get in a regular bed store it does not get higher like a hospital bed but my father in law built a support for it with a couple of wood boards so it would be higher.

Also the USA they have all kind of things and I even saw they sell attatchments for furniture legs to make them higher.

About knee buckling and transfers.

Does he have braces on his legs to support the ankles. That helps alot with support. during transfers.

II am dealing with exactly the same issue. I finally got the hoyers lift but haven’t used it yet. Im gonna practice on my sister first. andd well with everything I know it will be hard at first until we develop a system like we have had to do with everything else, I haven’t done it because I don’t want to torture him and since this is for me I wait. But I know I really shouldn’t. LIke I am afraid to ask him to endure more discomfort for my sake (as if I didn’t endure a lot of discomfort in my life for him, like back pain). My advice is not to be afraid to ask, he will probably be glad to be able to help you for a change.

In the meantime what I have done and that has helped a lot, is that every time I need to hoist him up in his chair or transfer I ask anybody who is around for help (or call someone nearby) It has releived a lot of my back pain. It is much easier between 2 people. Sometiimes there is nooone around, But if you can substract a few lifts from your day it sure helps.

It is inmensely important that you do whatever you need to help your back. I know, I have been struggling with burning back and neck pain for a couple of years. I got Xrays and the chiropractor said I have deviated cervicals , you dont want that. It iis not going to get better, if you ignore yur body as I did it will only get worse.

I know how hard it is to do things for yourself. Under the huge burden of the work, you need to let go of some things and sometimes ourselves are the easiest to sacrifice. At least you know you wont have to deal with anyones anger because you left something unattgended. ASt least that is what we think, the body has many ways of making itself heard when it is tired or depleted.

Sometiimes caring for yourself feels so inconvenient, I know I have reacted with anger when people tell me the "care for the caregiver lecture" like “yeah, whatever, thats easy for you to say”. Although I know its true.

Andres asked me the other day “why is it you can move heaven and earth to get me a van wheelchair computer etc” ( I organized huge fundraisers) “and you find it so hard to ask for what you need for yourself” . Hmmm






Anger

Sometimes it is easier to try and do whatever necessary so our Pals won't be angry, like they are dealing with so much already (That is guilt speaking) or out of self defense, because you really don't need any more stress or problems than you already have without them being angry with you.

Andres used to be really angry a couple of years ago, would take it out on me, like nothing I would do was ever good enough. We had huge fights, because I had to push things that I knew he needed, like the cane, then the walker, then the wheelchair when he was falling and breaking his head. It angered and bewildered him to realize he was getting worse. At the same time I was in so much pain because, to support his denial, he was using me as a cane and I was a part of that little game.

Then when he couldn't use his hands he was angry because I, of course could never do things exactly like he wanted them. Anyway, we had a therapy session and he told me an amazing thing. He said “I am like a boy that needs limits to be set I will get away with as much as I can" Wow! so I realized I wasn't helping anybody by letting him pour hiis anger on me. Of course they feel bad too when that happens it makes them feel wretched to treat bad the person on which they depend on and love. They are dealing with strong emotions but they have personal spiritual and emotional work to do in dealing with this disease ( you may or may not believe or that growth is one reason that we are going through this, it doesn't matter) and part of our work is to help them do it right ( hurting others is not the way) to learn the lessons they are being taught in surrender, tolerance, patience, compassion and right action.

Andres and I are partners in this way he won’t let me get away with neurotic behavior and neither will I. Which means we will let the other vent frustrations and try not to take it personally or get hooked in the story line but also to try to lok at what is underneath the pain and frustration under the anger. By the way anger is almost always a reaction to fear.

I also want to say that nothing is permanent and emotions also happen in stages. The Angry phase ended and he went into a mucho more loving and tolerant phase which happened partly due to the magic of acceptance, but also because I began to set boundaries and would very fiirmly not let him take it out on me. Everybody has to makke their own judgement oon what is healthy venting and when it is destructive unfair or hurtful, and therefore in no ones benefit.

Weakness

There is no way that Chris could think you are weak ( though he could even say so). Although I know they can often lose parspective trapped in the huge demand of their failing bodies and will do and say many things in their very real quest to get their needs met. It is obvious to everyone ( except probably ourselves) how incredibly strong we are and you, my dear are among the strongest, so young and raising a beautiful baby on top of it.

Of course he knows that perfectly, though he might not let on as a way of keeping you doing what he needs you to do, his life depends on it. I really am speaking of myself here in this last bit, I do not know your relationship. I do know that Andres can manipulate me with that, although he has sometimes told me I am the strongest woman he knows. I know II have a big fear that he will think I am weak, maybe it is in the face of such endurance that we feel we have to be at least as brave as they have to to live through this.

And somethiing ellse I want to say is that they will manipulate. Be it with anger , guilt trips, ( Every tiime I would tell him something like I am tired, Something hurts or I need space or whatever he would respond with, soomething like “I am worse off than you”, “I never rest, I never gett time off from this disease”, “mine hurts worse” etc. My answer, and I trulyy believe this, is for example : yes , you are always worse off, we know that, but yours hurting more doesn’t make mine hurt less and this (fill in the blank) is what I need to get better.
 

CindyM

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That was an incredible post, Citlalli. Thank you for sharing. You spoke honestly about issues that both CALS and PALS raise frequently. Thank you for that. Cindy
 
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