ARCG
Distinguished member
- Joined
- Oct 12, 2016
- Messages
- 218
- Reason
- Lost a loved one
- Diagnosis
- 1/2015
- Country
- US
- State
- TX
- City
- Houston
My pals has entered the end stages, I fear. He is on hospice and we do everything we can to make him comfortable. However, he refuses our suggestions that would help with his comfort, adjusting bed, recliner position, etc. I fear he has FTD. I suggest one solution, he refuses and 5 minutes later he is indignant because he wants me to do the exact thing I suggested. He has a couple varieties of comfortable masks, but often refuses to use them when he needs to during the day. he wears them all night with no issues. He has neck support issues and we have three types of necks supports, one of which was made especially for him, but gets angry when we try to suggest them. He refuses to wear a neck support and wants me to stand by his chair and lift his head when it drops.
But if I leave the room to clean his masks, filters, change batteries in shaver, fix a meal, clean up the kitchen, on and on...he complains even though he has an accessible call bell (he is not completely paralyzed and I have it where he can hit it easily). I usually wake up before him and grab some coffee and bring it back to the bedroom after making a pit stop and he told me he wants me to get him up and wait until his morning routine is done before I even go to the bathrooom. It seems he no longer sees me as a human being. We have some help, but if I am in the house he will ask me to do whatever even when they are right there. He waits for them to leave and the minute they are gone then asks me to do things they could have done.
I have lost him already, even though he is still here. Last night he had me get him up at 3 am to make some adjustments and asked me to put him in his recliner and turn on his computer so he could text. He proceeded to text stuff that made little sense to the current situation, mostly blaming me for not understanding his speech, (he can no longer talk and I was the last one to understand him when he could). When I asked him if we could text in the morning, he said no and we were up until 5 before I convinced him to go back to sleep. Besides text, we have other ways to communicate, all of which he refuses to use.
I hate this disease, we have lost him already, I will do everything in my power to help him, but it so heartbreaking to have the person you love go through this and look to you for a cure when there is none. He is now blaming hospice for his Illness as well.
i was able to keep him in relatively stable with a good quality of life for a long time, but the last few days he has declined quickly. the hospice nurse suggested considering oxygen, I will probably take her up on it tomorrow, as I fear the end is near and want him to be comfortable.
He is a very good man, loving, involved father and has lots of integrity. The disease has taken over. Thanks for listening. No one could ever possibly understand this who hasn't been through it.
But if I leave the room to clean his masks, filters, change batteries in shaver, fix a meal, clean up the kitchen, on and on...he complains even though he has an accessible call bell (he is not completely paralyzed and I have it where he can hit it easily). I usually wake up before him and grab some coffee and bring it back to the bedroom after making a pit stop and he told me he wants me to get him up and wait until his morning routine is done before I even go to the bathrooom. It seems he no longer sees me as a human being. We have some help, but if I am in the house he will ask me to do whatever even when they are right there. He waits for them to leave and the minute they are gone then asks me to do things they could have done.
I have lost him already, even though he is still here. Last night he had me get him up at 3 am to make some adjustments and asked me to put him in his recliner and turn on his computer so he could text. He proceeded to text stuff that made little sense to the current situation, mostly blaming me for not understanding his speech, (he can no longer talk and I was the last one to understand him when he could). When I asked him if we could text in the morning, he said no and we were up until 5 before I convinced him to go back to sleep. Besides text, we have other ways to communicate, all of which he refuses to use.
I hate this disease, we have lost him already, I will do everything in my power to help him, but it so heartbreaking to have the person you love go through this and look to you for a cure when there is none. He is now blaming hospice for his Illness as well.
i was able to keep him in relatively stable with a good quality of life for a long time, but the last few days he has declined quickly. the hospice nurse suggested considering oxygen, I will probably take her up on it tomorrow, as I fear the end is near and want him to be comfortable.
He is a very good man, loving, involved father and has lots of integrity. The disease has taken over. Thanks for listening. No one could ever possibly understand this who hasn't been through it.
