laurel
Very helpful member
- Joined
- Jul 19, 2007
- Messages
- 1,436
- Reason
- DX UMND/PLS
- Diagnosis
- 07/2007
- Country
- CA
- State
- BC
- City
- Vancouver
Richard it sounds as though your situation is complicated in many ways. From reading about others that have gotten a vent, the 4-6 week period in rehab probably isn't such a bad idea in that it seems that it takes some time for the PALS to adjust to the vent and trach with lots of suctioning required, and just general adjustment. Most of the care givers who have written about the adjustment when their PALS came home found it really overwhelming. It didn't seem that the trach and vent care overwhelmed them per se, but rather the combo of learning the routine and the PALS problems with increased suctioning and general adapting to the trach and vent. But it seems to settle after 2 or 3 weeks. It will be hard on you to be apart from your loved ones, but in the end maybe an easier transition?
I'm not sure what to say about the financial end of trying to pay for modifications to your home and paying for 24 hour care. In all honesty, about the only solution I can conjure up is accepting permanent placement in a long term care facility that takes vented patients. Then of course your medical plan would cover your care. But it sounds like that alternative would break your heart--living away from your family. I'm trying to put myself into your shoes and offer ideas the same as if you were my family member. We wouldn't have the money either to have 24 hour care givers. So I think I would encourage my family member to check out facilities who accept vented patients, and then decide if they could have good quality of life in the facility knowing they would have daily visits from family. Following Joel's story over the years, it seems that at the end he felt that he had burned out his family with trying to piece together a plan so that Christine wouldn't be burned out by the responsibility of the care giving. It worked for a long time, but in the end it seems there wasn't enough care giver support in place for them to be happy. But after he made his decision to pull the plug, I often wondered why he wouldn't consider living in a facility and having family visit. Easy for me to say, but I think it would totally hinge on the quality and set up of the facility. I am a retired RN and know that aspect is critical. Life can still be satisfying for those living in a facility, but not if the family just dumps them there and forgets them. I have seen many quadriplegics having a good satisfying life living in a nice facility, but all had good family support.
The other alternative seems to be staying at home, turning the living room or family room into a bedroom with some sort of port-a-potty set up behind a curtain, and borrowing as much equipment as possible. Yes, it turns the home into a mini hospital, but it is something that could work as long as the rest of the family has an area to relax in too. As far as 24 hour care, I think in the last few months Joel was able to hire cheap labourers who weren't connected with an agency and then he/Christine trained them to assist with the trach and vent. I would likely go with this last option if my husband was in your situation. I hope I haven't stepped over the line with my comments Richard. I like and admire you and want things to work out in a good way for you.
Laurel
I'm not sure what to say about the financial end of trying to pay for modifications to your home and paying for 24 hour care. In all honesty, about the only solution I can conjure up is accepting permanent placement in a long term care facility that takes vented patients. Then of course your medical plan would cover your care. But it sounds like that alternative would break your heart--living away from your family. I'm trying to put myself into your shoes and offer ideas the same as if you were my family member. We wouldn't have the money either to have 24 hour care givers. So I think I would encourage my family member to check out facilities who accept vented patients, and then decide if they could have good quality of life in the facility knowing they would have daily visits from family. Following Joel's story over the years, it seems that at the end he felt that he had burned out his family with trying to piece together a plan so that Christine wouldn't be burned out by the responsibility of the care giving. It worked for a long time, but in the end it seems there wasn't enough care giver support in place for them to be happy. But after he made his decision to pull the plug, I often wondered why he wouldn't consider living in a facility and having family visit. Easy for me to say, but I think it would totally hinge on the quality and set up of the facility. I am a retired RN and know that aspect is critical. Life can still be satisfying for those living in a facility, but not if the family just dumps them there and forgets them. I have seen many quadriplegics having a good satisfying life living in a nice facility, but all had good family support.
The other alternative seems to be staying at home, turning the living room or family room into a bedroom with some sort of port-a-potty set up behind a curtain, and borrowing as much equipment as possible. Yes, it turns the home into a mini hospital, but it is something that could work as long as the rest of the family has an area to relax in too. As far as 24 hour care, I think in the last few months Joel was able to hire cheap labourers who weren't connected with an agency and then he/Christine trained them to assist with the trach and vent. I would likely go with this last option if my husband was in your situation. I hope I haven't stepped over the line with my comments Richard. I like and admire you and want things to work out in a good way for you.
Laurel
