April 11, 2012 I placed my dh in an Alzheimer Unit in a nursing home. I didn't do this to forget him,,,, but because I love him. I could not keep him nor myself safe any longer. Not that he was violent,,,, he kept falling and I could not attend to him when he fell. It was getting harder and harder to handle. Within the last two weeks he has declined noticable. He smiles all the time. This is wanning. He could stand, sit, and understand to some degree,, when told to do either of these things. Of course, he was given visuals not just verbal instruction. Now it takes forever to get him to finally do any of these. The CNA's are having a very difficult time "reaching" him. It hurts my heart to see this happening even tho I know this is what happens. I really need some advice on bringing him home once he gets bed ridden. I know the emotional issues it will cause me and our youngest son, but I am more ready to handle that than getting a call one day that he has passed without me there. I understand the things that will have to do done for my dh, but I know I can take care of him better when he is not able to move around all over the place. I know it will not be a walk in the park but really would rather him home than in the nursing home at the end.... that is if he last that long. I really don't think the time is long before he will be bed bound. I need advice from those that care to post. I need the good the bad and the ugly of what I am wanting to do. PLease help me figure this out. Also, he has Hospice here at home to help me. He has that in the nursing home also. I miss him so much and don't want that to cloud my decision, but lately I am having a rough time with the decline. Thank all of you,,,,, you all play a large part in how I cope with this horrible disease...... thanks.....
mammie, I can't help you with this situation, but I want you to know that my heart goes out to you. I know you will get some good feedback from our friends here because some have brought their LO's home to pass while others weren't able to. I pray that God helps you with this decision.
I'm wondering about that too mammie. I don't know what I will do. On the fortunate side, his ALF is 2 minutes from my house, so it will not be too hard for me to be there most of the time when we're that into the hospice stage, but it's hard to say. I have thought about what you're thinking about.
As you may or may not know from my post regarding my dh who died at home on 8/28/12 I tell the special story of having your loving spouse at home, if you can and want to and how it can be achieved and how I felt it was the most rewarding thing I have ever done in my life.
First I would have your spouse's doctor request an evaluation from hospice. I could not have done this by myself with out hospice. And, if you can try and find a hospice in your area that has supporting staff that can provide help to you. Hospice came into our home and sent a helper 3 times a week to shower my dh, the nurse came twice a week and the doctor came at least once a month. And, a social worker came once a week that provided me with the name of various local sources I could use to get additional help. Some of this I had to pay for out of my pocket. But, medicare paid for hospice.
Please read my long post and you will understand why I highly recommend to those that want to have their spouse at home is such a wonderful thing to do.
Mammie, I am one of those who brought my husband back home after he became bedbound. I could see that I was able to do the things at home and without having to pay about $7000/month I was able to afford to bring in help when it was needed. He had no other health issues other than the AD so I didn't have to worry about other things, i.e. diabetes, heart disease, etc.
I spent lots of time with him at the AD facility and learned how to change him, could even put clean linens on the bed with him in it and could give a pretty mean bed bath. I had aides who came twice a week to get him into the shower and cut his hair etc. He lived back at home for over three years before he contracted aspiration pneumonia and passed very peacefully.
I wish I would have been able to bring DH back home, altho the facility was 15 mins away & very good. But at the time I was unaware of how hospice could have helped me. If I knew then what I know now, I would have done that. I was there went he died tho. I could no longer have done it myself, but yes, that's what I would have done.
Mammie, that is a tough question. I care for DH at home but I have to pay for help 5 days week. I have aggravated an old back injury and this does not make it easy as I'm not as strong as before. I can change and bathe as I do on weekends. The main prob$em is when he gets so far doWn in bed, even with his feet raised I have difficulty with pulling the "pull" sheet to get him in a better position. This depends on your health and if you can have help at home if need be. I do enjoy my time with him on weekends when I feed him. I understand how you miss him.
Mammie, that is a tough question. I care for DH at home but I have to pay for help 5 days week. I have aggravated an old back injury and this does not make it easy as I'm not as strong as before. I can change and bathe as I do on weekends. The main prob$em is when he gets so far doWn in bed, even with his feet raised I have difficulty with pulling the "pull" sheet to get him in a better position. This depends on your health and if you can have help at home if need be. I do enjoy my time with him on weekends when I feed him. I understand how you miss him.
Nellie - have you tried getting at the head of the bed and pulling up that way? That is how we did my BIL - he was 6'4" and dead weight.
Mammie - others will come along and help you who have done this. If that is your hearts desire and it is not too much for you physically then I would precede to find out what you can get in the home: hospital bed, supplies, etc.
Also, the care is much easier if your spouse is in a hospital bed which hospice can order or your doctor can order and medicare will pay for the rental. The bed can be raised for easier changing of diapers and bedding and it is much easier on your back.
When my dh would get too far down in the bed, I would push the head of the bed out from the wall and get behind the bed (the head of the bed was very low) and roll up the draw sheet and pull him up just a little at a time. It might take four or five time to get him back to the way you want him, but doing it by inches doesn't hurt your back so much. Also...put a pillow at the foot of the bed so they can't hurt their feet.
Talk with someone at the hospice. They can talk with you about some of the issues.
Also think about the amount of care he will need at home. I suspect he will need 24/7 care, which could mean hiring 3 or more nurses (and be prepared to fire them as needed).
After hospice came on board I had care only 3 days a week in the mornings that was paid by the VA... I guess it depends on how active your spouse is regarding the care. Later I increased it to 4 hours a day 3 days a week and even later I increased it to 4 hours a day everyday of the week. It wasn't until the last week I felt I needed to add two hours in the evening to get him ready for the night. Never did I feel the need for 24/7 care or even 8 hours per day. Only the caregiver knows the extent of their spouses condition and how much help they might need and if they can afford to pay for the help. I figured it was a whole lot cheaper then an assisted living.
I was fortunate to have help from the VA and the sicker he got the easier he was to care for. Hospice also provided the necessary medications to keep him calm most of the time. Early on he was still alert even when I gave him small doses of the medications and he could tell me when wanted to eat, when he was cold and when he wanted to get out of bed for awhile. Hospice also showed me how to get him out of bed and make only one-half turn and I could get him into the wheel chair and bring him in the family room to be with me or out on the patio to get fresh air. I had medication to help him sleep during the night and the night was only a problem a few times.
There was only one person I had an issue with, but she was so knowledgeable and helpful with my dh I tolerated her opinions that I didn't agree with. Overall...I would give all the help I had a 99.9% favorable rating. Maybe I was just lucky in having such a wonderful hospice group and they also had this trained support group of helpers that I could call and get to help me as needed.
I think that is a personal decision and if you want to bring him home to die - do so. I once visited two family members who had come home to die and one's daughter, who was a nurse, said it is so much easier at home, and I believe that.
I was fortunate, in that I never had to place my dh and both he and my mother passed at home with Hospice on board. I recently advised a friend, whose husband had cancer, to bring him home for HER sake as much as her dh, and she did when the Hospice people asked her if she wanted to bring him home for his last days. She told me later he was so much more peaceful and she was able to relax more.
At the point where they have a catheter all I had to do was give him his meds, swab his mouth, clean around the tube, keep him turned to avoid bed sores and I was able to rest in my own bed and eat at home etc. Hospice aide came daily to bathe him and check for problems. However, I had daughters in and out daily so I was not alone all the time.
It is a individual decision, but I would do the same again. However, do what is comfortable for you. It just exhausts me sitting in the hospital - waiting. Take care...
I appreciate all the advice from my cyber family. I really feel that when that time comes I will bring my dh home. I know the help I can get from Hospice and that is one of the reasons I can consider doing this. Maybe at that time his family will actually give a d--- and come see him knowing I am going to donate his body and not have a service. Who knows it may be best for all of us..... As long as my dh is content, safe, and able to come home I think this is what will happen. Again, thank all of you for everything.