evansmom99
Member
- Joined
- Jun 15, 2011
- Messages
- 26
- Reason
- PALS
- Diagnosis
- 06/2011
- Country
- US
- State
- CO
- City
- Denver
My Husbands Dr made a referral for palative care and I have to say when I think of it I think about nursing home care. Currently my husband continues to loose the ability to talk and swallow without choaking. The other day I thought I would have to call 911 but he swore he was okay and agreed that he would not eat and watch TV at the same time but that yet has to change.
The worse is the loosing sight of the man I fell in love with, hed is frequently angry for no reason or during a general discussion become angry and blame me for what ever. Nuro Dr feels he has the als dementia as well as Dementia as a result of some years of abusing booze and drugs. Dementia also runs in his family from what I have learned. Today he walked in (remember we both are life long residents of the Rocky Mt region) and asked "what are those white things? Prodding I said what white things, he startes to get frustrated and angry. Then goes on to say the white things that have those things that change color on them.... after much thought I said you mean Aspen Trees? That was it he went back to his computer where he frequently camps out typing who knows what on his computer. I hope it is a letter to our son that I suggested he write to him.
He still forgets agreeing that I can not lift and roll him, and does not want our son to wake up go to school and come back home to the fear that Dad won't be here, or worse yet pass away in the thought of not finding dad alive in the AM. My husband Robert was very clear that he did not want anything no feeding tube, or breathing tube when it comes to the point that he can no long move or speak for himself. He likes the idea of going to a inpatient Hospice where there is more consistancy in Staff, and will allow as much time with him as we want. Plus they have some pretty cool therapies that he would like to do while there to help him relax and be able to enjoy his time with us.
I have learned for this so far that I am angry with him, feel guilty, scared, love him, but can find myself hating him when he says this is all a big mistake and nothing needs to be done. It is such a yo-yo feeling. I miss the man that I married who I could tell anything to, to be able to just sit and enjoy each other, do small things to show we care. In some ways he is rushing to cram a llifetime in with our son, and can laugh with me at times but for most of time is pretty grumpy with me. He has had a hard life and I hate to see him this way and notice a bit more slipping away day by day. I want so much to be able to show him that I do love him, my best friend, the father of our son. How do I help him let go of trying to fix and control eveything that goes on in house and just enjoy our time together as a family....
Sorry to ramble but got a roll that looking at it clearly shows I needed to get it out...
Thanks for listening. and info on Pallative care would be great. Btw we live in the Denver area.
The worse is the loosing sight of the man I fell in love with, hed is frequently angry for no reason or during a general discussion become angry and blame me for what ever. Nuro Dr feels he has the als dementia as well as Dementia as a result of some years of abusing booze and drugs. Dementia also runs in his family from what I have learned. Today he walked in (remember we both are life long residents of the Rocky Mt region) and asked "what are those white things? Prodding I said what white things, he startes to get frustrated and angry. Then goes on to say the white things that have those things that change color on them.... after much thought I said you mean Aspen Trees? That was it he went back to his computer where he frequently camps out typing who knows what on his computer. I hope it is a letter to our son that I suggested he write to him.
He still forgets agreeing that I can not lift and roll him, and does not want our son to wake up go to school and come back home to the fear that Dad won't be here, or worse yet pass away in the thought of not finding dad alive in the AM. My husband Robert was very clear that he did not want anything no feeding tube, or breathing tube when it comes to the point that he can no long move or speak for himself. He likes the idea of going to a inpatient Hospice where there is more consistancy in Staff, and will allow as much time with him as we want. Plus they have some pretty cool therapies that he would like to do while there to help him relax and be able to enjoy his time with us.
I have learned for this so far that I am angry with him, feel guilty, scared, love him, but can find myself hating him when he says this is all a big mistake and nothing needs to be done. It is such a yo-yo feeling. I miss the man that I married who I could tell anything to, to be able to just sit and enjoy each other, do small things to show we care. In some ways he is rushing to cram a llifetime in with our son, and can laugh with me at times but for most of time is pretty grumpy with me. He has had a hard life and I hate to see him this way and notice a bit more slipping away day by day. I want so much to be able to show him that I do love him, my best friend, the father of our son. How do I help him let go of trying to fix and control eveything that goes on in house and just enjoy our time together as a family....
Sorry to ramble but got a roll that looking at it clearly shows I needed to get it out...
Thanks for listening. and info on Pallative care would be great. Btw we live in the Denver area.