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kfrancis

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Aug 10, 2010
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Loved one DX
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Wa
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Lynnwood
I have not been on this forum for a while due to our busy life. Someone from this forum said I would get more feedback if I posted here so thanks for that information. I have been caring for my husband for about 2 years now that he has needed a lot of help but he was diagnosed with ALS when our little boy was 6 month old and he is now 3 and 1/2 so we've had a long journey with this awful disease. I have a lot of help from caregivers that come into the house but it is still hard when I don't have caregivers because then I'm caring for my 3 year old and my husband. I get so frustrated a lot because I am sleep deprived. My husband is on a bipap machine and on very high settings his settings are now 24/8 if anyone knows about bipap its super high. The machine only goes up to 25 and after that we can't do anything about his CO2 bulid up except to let him fall asleep in peace. HIs machine leaks alot during the night so I am constantly waking him telling him his machine is leaking so leaves for a bad nights sleep and a cranky me, then a 3 year old all day. His family all live out of state but they come often to visit. We are yound so all of our friends have kids and jobs of their own so to get help is often hard. My husband has been on hospice now for a year. He was getting up with assistance to take showers with his bipap on (portable one) until last week now he is bed bath only, too weak and really hard time on him with his breathing. I know we are in the final stages not sure if it will be 1 month or 3 months. I have been working on his slide show for his service, he wants to be a part of it. I want it to be beautiful and perfect and know I need to do it now, get it over with and then no worries, I will not be able to do anything like that when he's gone so I just want to do it now while he is still here. I read a post that a woman wrote stating she was having a bad day and when she would walk down the street and saw couples hand in hand she was upset by that. I am too. I hate hearing about people going on vacations, having babies and getting married only to start a life together when ours is coming to an end. I need advice to make him happy, enjoy his end of life instead of my being angry and stressed all the time. I don't like to be that way. He is very demanding and has to have things exactly a certain way, I feel he doesn't comprimise anymore when it's easier for me to help him with something and I have the time but he just flat out doesn't want to. There are comprimises in a marriage sick or not, I'm not expecting him to do something crazy, just he needed an enema the other day I had the time to do it he said no, it had been 3 days since he had a bowel movement so after 3 days we do enemas, I had the help here to stand and transfer him and I wasn't going to have the help the next day. This is just one example there are many more. I want to have the end be happy, peaceful with good memories not angry and upsetting for both of us. This is where I need help. We have a counselor who comes into our house once a week, we have a priest come every other Sunday so you would think we would be at a good place but we arent'. I can tell now we don't have alot of time so any advice would be so great. Thanks so much. Kelly
 
Hi Kelly,

I am glad you posted on here, as people understand what you are going through. My son is 2yr and 2 months, and I understand the demands of caring for somebody, being sleep deprived and then having to look after your child. Not many things come close to this challenge.

You say: " The machine only goes up to 25 and after that we can't do anything about his CO2 bulid up except to let him fall asleep in peace. HIs machine leaks alot during the night so I am constantly waking him telling him his machine is leaking so leaves for a bad nights sleep and a cranky me, then a 3 year old all day."

This is not the case, there are machines that go above pressure of 30, and I know of people who have used them. As for leakage, yes the higher the pressure and stronger the blast of air, the more likely it is that the mask will leak. But there are so many different masks out there, so I suggest you try out a few, for his own comfort and for yours (to stop the need to get up every time the mask leaks). What mask is he using? My partner's pressures are 20/4, and he still uses nasal pillows without problems. His mask rarely needs adjusting.

Do write back.

Dani
 
Kelly, is he taking any anti-depressants? Sometimes counselling isn't enough and medication is warranted, perhaps for you both.

I wish I had something magical to offer to help make the situation easier, but I don't.

If he's willing to check out a different mask, as Dani suggested, that could help with attitude also.
 
Kelly,

You, Dani and the other CALS that deal with this disease and young children are such extraordinary women. I cannot imagine the additional strain that would have placed on an already impossibly stressful situation. For me, the sleep deprivation was the most difficult thing to deal with. It magnified all other issues. If I could change one thing about the way we handled things, that would be the greatest change I would make. I would try to find a way for someone to come into the house and take care of my husband's needs so that I could sleep. When I got enough rest, I handled everything better, even my husband's control issues. I was able to understand where they were coming from (not that I didn't have to take the bull by the horns sometimes!).

Will hospice provide someone to come in and be with him while you take a nap? Maybe your son could go to a Mother's Day Out program (or a few MDO programs!) during that time. We paid an old high school friend of my husband's to come in a few times a week for 4 hour stretches. Many days, I slipped back in and took a nap. It was amazing how much better the day went when I did.

Like CJ, I wish I had some magical words of advice to offer. I can only say that I got through it with prayer - lots of prayer, and the support of people who truly understood what we were dealing with. You, your husband and your son are in my thoughts and prayers.
 
You and your husband are in my thoughts and prayers.
 
So very sorry Kelly, it has to be very hard with a small child, at least mine are grown..
 
Hi Kelly.....all of these suggestions are wonderful, and I hope they are helpful to you. Please give them a try.

My husband has FTD along with ALS, and I can feel your pain about your husband putting you in positions that make things more difficult for you. Mine did too, and then I found myself getting resentful and trying to reason with him about making things easier for me. It totally fell on deaf ears, of course. Here is how I solved that......I no longer would say, using your example, "Honey, do you want me to do your enema now?" No. The sentance should be, "Honey, it's been 3 days since you've had a bowel movement, and (so and so) is here to help me so we are doing an enema now, because I'm concerned for your comfort." Do not make it easy for him to say no, because given the chance, they will. Give him all the control you can over things that don't over-compromise you, like what you can have for dinner, if he's still eating by mouth. But do take care of yourself, while you're taking care of him. That will go a long way in your ability to make these last days the best for all of you.

I hope this helps. My heart goes out to you and your family. Peace.

Shelly.
 
Kelly, I am sending you good thoughts. stay strong girl--you do have such a hard situation and I am so so sorry.
 
Hello and thanks for your information, my husband is on a bipap but its our 2nd or 3rd machine and he used nasal pillows for a year but when the pressure gets to 24 they leak a lot. He has a full face mask over nose and mouth as long as we have headgear tight it has just a small leak but at night depending on the way he sleeps it leaks off and on. I've heard of getting a machine that goes to 30 but really 5 more numbers is not really going to give him that much more time, he is so weak now and he has thoracic onset als so it's attacking all the muscles in the breathing area and his spine etc. So could call myself somewhat of an expert now on bipap machines, masks, cushions, headgear and settings. The pulmonary Ddr. didn't think getting another machine would really help that much either. We have all of our affairs in order now as far as preparing for the end. I just wish we were more at peace with each other. I always feel frustrated and like I do everything (which I do and never seem to get a break). I wish you the best too and hope to chat more. Thanks again Kelly
 
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