kfrancis
New member
- Joined
- Aug 10, 2010
- Messages
- 7
- Reason
- Loved one DX
- Country
- US
- State
- Wa
- City
- 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
