It has been a tough week. I spoke with the head nurse at the assisted living facility last Friday and we talked about calling hospice in. Hospice contacted me Monday and I met with the 'admitting' nurse. She examined Mark and spoke with their doctor and Mark was accepted into hospice. Oddly enough, it wasn't because of dementia, it was identified as debility. In other words, his rate of decline has been very steep. On Tuesday, I was overwhelmed with phone calls. First, the assigned nurse, then the chaplain and then the social worker. Everyone has been wonderful. Mark's assigned nurse spent between 2 and 3 hours with him. Because he isn't able to communicate with people, she basically followed him around. She was very insightful. She believes that a lot of his behavior problems (Mark has been very distructive since he has been placed) are due to boredom. I have already brought large lego's in for him and this weekend I will pick up some 'building' type toys geared toward 10 year olds. Hopefully it will help him. I'm dealing with it much better than I would of a month ago. Now that he has been placed in an ALF, I am able to get some sleep and rest. I'm not so exhausted all the time.
Diane, I'm so relieved that you now have joined those of us who have asked for and received Hospice. It helps us get the rest we need. I can not say enough good things about them. I am hoping that everything will be easier for you now. Take care of Diane!
Diane, thank you for sharing this information about hospice and the way this process is working for you. I'm interested to know if the ALF staff will help him use the leggos or if these things will just be available for him to 'fiddle around with' whenever he wants. Its good to hear that you are able to get more rest and can feel that Hospice is also on board to help you.
The lego's have been interesting. Mark has spent time putting them together. It seem to occupy him. He has always liked building things. Sometimes the staff works with him and sometimes they don't. I was there a couple of nights ago to find that he put a lego in his pants. I chuckled. The other residents are also playing with them. I think the brightly colored blocks get their attention and they play or fiddle with them. I plan on getting him an 'erector' (sp) set this weekend as well.
DianeT -its good news you have hospice on board. so many of us all over a small period of time have our spouses now with them. its another milestone to overcome but once everything is in place a good comfort to know they will help with any concerns. so happy your DH likes the toys. it comes to a time in the dementia life that they resort to being able to do only simple things and if that gives them pleasure so be it. we do what we can to ensure their happiness and give them the best quality of life for the place they are mentally and physically. my DH has found countless hrs fiddling with a variety of toys. if they enjoy that then its a good thing! divvi
Diane T- my DH also was accepted by Hospice this week under the same category--debility. I was not expecting it. I had wanted the Evaluation to get an idea how close we were and get answers to some questions. I am still assimilating everything. He is home and I've been his lone Caregiver for a long (22 years) time, first because of Mental Illness and the VaD added. My mantra right now is: "If anything happens call Hospice." I have to get that locked in my head. 24/7 back up is a phone call away. I don't cry, but that makes tears well in my eyes. They know his Dx and they don't bat an eye when he says or does things kind of 'off' or unsocial. They 'get it'. Their care is for him, but they're here for me too. I'll have to get used to that. The intake with getting everyone introduced has made a hectic week--hard on DH, but things will settle down now.
DianeT- my expeience with hospice was comforting. They took Rob's "off" social skills far better than I ever could have imagined. They were as concerned with my welfare as they were with him. One thing we found helpful was to at least have one person in the team to be a regular, it took two to bath him and often times the two cna's meeting up weren't always the same. But they agreed to keep it as consistant as they could. Our experience with the hospice home itself was comforting. Luckily for three days we had the same team of nurses. The night he passed we had a new team. Hospice is a good solution at this point in AD care. I am a very strong person and thought that I could have handled all this by myself. It wasn't until I agreed that it was time that I found my real strenght , accepting that I had done my best. I wish you so much love and hugs in this journey. Glad the legoes are helping.