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Jeffreyp

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My PALS is bulbar---no speech at all, no use of right arm, limited of left arm and can walk with some assistance. I have hit a wall with what it takes to get her in bed and comfortable sitting. Long before her ALS she had hard time getting comfortable. She spends a lot of time on love seat propped up by 5 pillows and her neck supported by a combination of rolled up hand towels. Sometimes it is green towel that works, sometime green and white, sometimes 2 white-you get the picture. When I say there has to be a better more consistent way her response is I don't understand how her neck hurts. She refuses to try and find an easier more reproducable way. We once looked at lift chair but now she refuses to do that again. For months she was comfortable sitting in a chair with 3 pillows but now she has added a 4th small one that constantly needs adjusting.

Bedtime is a nightmare. She sleeps alone in bed--now on 5th mattress in 8 months. It takes a combination of 3 pillows under hips and legs and hand towel and bean bag neck support to get her comfortable. Since she cannot communicate once in bed except by hand signals ---after ambien she can't type on ipad coherently and i can never follow her hand gestures. The process takes 15-45 minutes to get her comfortable. She insists on literally crawling onto bed and trying to get lined up to plop.

Last night pushed me over the edge. After 90 minutes of trying to get her comfortable i left room to close up the house and get myself ready for bed. I have bed n same room as her bed. I laid down and she moaned to get something for her, no sooner did I get back in bed she moaned agin to swab mouth.I get back in bed again and she moaned to spell out with her finger-GOODNITE.

She refuses to discuss getting home health at night. At some point is it ok for me to just say I can't do anymore to get you comfortable or give her option of hiring a nurse. I have no help from anyone and feel like I am losing my mind. Of course then the guilt gets hold of me. ny thoughts would be much appreciated.
 

Dave Kerwood

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Hi Jeffreyp

Sounds like a nightmare for you and your PALS...

Is there a dementia element here as well, if so then I can really and completely understand the situation.

Dave
 

Jeffreyp

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No dementia. A lot of stubbornness. She can do Sunday NY Times crossword. We can through the bed process 3-5 times a night because she has to get up to suction.
 

lgelb

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Hi Jeffrey,

If she still has to be suctioned 3-5x nightly post-Ambien, she is not hitting deep sleep much if at all, yet since she is partially sedated after it, she is probably honestly unaware of all the incremental summons that are so hard on you.

Is there a humidifier in the room? Is the heat set too high? What has been the problem w/ all the mattresses and what is she on now? Do you have vertical bolsters on both sides of her head (we used small flexible heating pads) to avoid involuntary neck movement that could cause pain? Do you do any kind of neck exercise/massage/stretch w/ her? Have you consulted a PT to develop a range of motion regimen for the immobile parts? I am assuming she's in a hospital bed and that you have upper and lower torso elevated but you don't say that explicitly? Also, not sure about BiPAP, which if she is on, may need tweaking?

Re the need for suction, besides humidification, I'd look at what she's eating/taking in before bed and try to have the last meal/feed of the day be something more astringent/hot. When you suction during the night, is it mucus or saliva that you're getting up?

At any rate, there are more effective sleep aid combos than Ambien depending on the other issues that might be fine-tuned. A sedating agent in a different class such as trazodone in a low dose, added to the Ambien, is one possibility. For many people, exposure to hot water/a heating pad on the face/torso is comforting before bed. I don't know all your routine.

I do have to caution you, though, that "reproducibility," while essential in scientific experimentation, is increasingly unlikely as progression continues, to be the case in alleviating ALS symptoms. They're a moving target. And since it sounds like she had pre-existing musculoskeletal issues, a phenomenon with which I am familiar, all the more so.

You need your sleep, and so does she (if she's up that often, her pain during the day is all the greater); I would run through the list (and I'm sure others will chime in with what I've forgotten) and see how far that can take you.

Best,
Laurie
 

cheerleader

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Jeffrey, my hubby had bulbar ALS, and neck issues, supporting his head was a major issue. He found relief with moist heat microwaved neck bags- which he used all day long. As the nerves die and muscles can't support various body parts, what your PALS is experiencing is common.
You do need to take care of yourself or you won't be any good for her. Perhaps explaining that will make her more amiable to nighttime help. Good luck. Donna
 

Jeffreyp

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Everything is by PEG tube. We have tried humidifier in room and really makes no difference. She goes to PT once a week where they do passive range of motion on arms to reduce pain. I do same exercises on limited basis for her at home. No one has suggested neck exercises. No hospital bed but it is adjustable both head and feet but she only will raise head slightly. Says she cannot sleep on back at all as phlegm gets her chocking but i have never seen her try that. Now on elavil(amitrytilene for secretions--tried atropine drops and rubinol--no success. She will not get off ambien Doctor wants her to use xanax as there is anxiety issue but she refuses that. Her comfort is a moving target.

I have had many conversations with her about my status---she thinks what I have to do is no big deal --I still work full time from home and do all housework and laundry. I don't want to get to point where I just get her in bed and say good luck getting comfortable or bring in nurse and say its your choice to use them or not.
 

Michellesews

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I feel your pain. I'm in the same situation with my husband. Sometimes I want to just leave and never come back, but of course I would never do that and neither would you. I have no solution. It seems as soon as my butt hits a chair I am summoned again, and again...the house and laundry, cooking meals, I feel like I'm a robot anymore. I want to run away but as soon as I leave the house for any reason I'm so worried I hurry and return. We had some useless girls from an agency come who were supposed to help him shower but they were too shy to go into the bathroom with him. They just sat at my table on their cell phones for two hours so I called the agency and asked them not to return. It is hard, so very hard and NOBODY can understand unless they walk in these shoes. At least you know you are not alone, although it often feels like it. God bless you.
Michelle in Texas
 

Jeffreyp

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Thanks for the replies. Good to know others out there. It is just so hard when every single suggestion i make to help her seems to be rejected because not her way.
 

affected

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I feel your pain too.
My Chris made every single thing very difficult and I somehow stumbled along doing all I could as I could.

He also would reject most of my suggestions, and would accept them when told by a health professional ... until we got back home where he would reject them again.

I did just find ways to love him no matter what, do my best, and let him make bad choices. The exhaustion is something you just can't explain to any other person though, physical and emotional.
 

Loverly

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Do you have a hospital bed? Kathy (also bulbar) was using a wedge and multiple pillows until we got the bed, which was leant to us from the ALS Association. She was much more comfortable after she started sleeping there.
 

lgelb

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Jen, Jeffrey said she is not in a hospital bed, but one that has adjustable head/feet, and has chosen only to have the head slightly raised.

Jeffrey, you didn't mention if she has BiPAP? If she needs it and doesn't have it, that would definitely affect sleep.
 

Jeffreyp

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She has BiPap but the first time she ever put on she delared she could not sleep with it so she has never tried. Of course every health care person says she needs to use it. She is just now starting to use it some during the day. We have tried 4 different type of mask and nasal pillows.
 

adventureseeker

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Can you get someone in to do the housework, laundry and maybe cook some meals for you? Take some responsibilities away from you that don't add value to your life at this moment in time. Maybe if you had less chores to do during the day you could enjoy the time you two spend together at night a little bit more? It also took me a long time to get my CALS ready for bed at night but I tried to think of it as our time together and it was something I could do for her that she couldn't do for herself. It sounds like you will need some more help in the long run but laundry, housework and food prep take up a lot of precious time. It might be a good start.
 

Nuts

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Jeffery, you need some sort of break. As much as we hate to force anything on our PALS, if that means someone comes in at night so that you can sleep, at least a few nights a week, then you may have no choice. I don't think you can ask yourself it it's ok. I think you need to ask yourself if you can continue doing what you are doing without risking your health or sanity, keeping in mind that the better rested you are the better you can care for her.

It sounds like you are taking your PALS to PT. Wouldn't it be easier on both of you to have home health send at PT to the house? With ALS she should qualify. You just need to stress how difficult and exhausting it is for her to travel to an appointment that in itself is a drain on her energy. Also, does she have a power chair? If she needs assistance to walk, it's time. It will save energy, make her more independent, and might prove more comfortable for her with it's many position options. Also, a visit from a good OT might be in order if you haven't been down that path already. The OT might be able to recommend ways to ease things a bit.

I've seen people describe pain for PALS as a moving target, and I'm seeing that already. As soon as you find a comfortable formula, things change. My husband's biggest fear seems to be having pain and being unable to move to do anything about it, and I dread him not being able to communicate what he feels to me. This is a nightmare unlike any I cold have imagined. Does your PALS have any paid medication? Mine takes a host of drugs at night and still we struggle. I don't think we'd get through on just a sleeping pill.

Jeffrey, you are doing this by yourself. Please try to stop the guilt. Let her know that you can't go on this way and still take care of her. If you collapse or get sick, what will happen? You must protect yourself in order to protect her.

My heart goes out to you. Please let us know how you are doing.
Becky
 

Jeffreyp

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I tell her I need a break all the time and her response is she does not get a break. Her father passed at age 70 and her mom was caretaker so she thinks no big deal for me. Well her kids tall me her father was essentially self independent up to end just had blood transfusions 3 times per week and spent a lot of time in bed. The laundry and housework i can handle--I just let it go until there has been a good few days.

The suggestions of getting therapy at home is good one. Her therapists have suggested that. i did have therapist come to home and observe how she gets in bed and she was adament not safe but no change,

I think i just have to give her dates will i going to take a break and say we can together find help to come in or i will just do it.

I have read ALS caregiver bill of right and recognize the burn out but doing something about it is the hard part.
 
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