Dad is pretty much bedridden in a nursing home. When they try to do therapy, he resists. When they move him from bed to wheelchair, he yells. He was even yelling when they were trying to take his shoe off. Could he be in that much pain? While sitting in the wheelchair, he slumps forward and his eyes are closed most of the time. From what we're told by the staff, he eats a decent breakfast (about 50%) but doesn't eat much for lunch/dinner and gets very little fluids and they have had to give him an IV. He's lost about 12 pounds in 3 weeks. We are getting his home ready for him with a live in because we believe he will get better care and may eat/drink more. We're not sure what else to do except to make him comfortable. He doesn't want any life support and has a dnr. If he becomes dehydrated at home, how do we handle this and is it considered life support? What about food? The sad thing is he was feeding himself, although slowly, 3 weeks ago. He seems to have gone down hill drastically in the last 3 weeks. Thanks for your help.
I agree with Pam. You do have to wonder what that doctor would have to say for himself. Did he actually go and examine your father?
How is your mother doing? I hope you're able to comfort each other. My condolences to you and your family.
Well, my Dad went into the Hospital the first week of May 2017, after a fall in the bathroom which required the fire dept. to come and remove the bathroom door to get at him because he fell against the closed door, and ambulance to bring him to the hospital. When he arrived at the hospital, he started having issues with his core body temperature dropping dangerously and had to be put into a heat suit for 2 days on and off, his toes on both feet which were, purple and infected, due to no circulation from not walking. They amputated 3 toes on each foot. While he was in the hospital, he began to have issues with his kidneys, to find out the catheter backed up and his urine was not being properly expelled (not sure how this would happen with medical staff around?). He started becoming less coherent and seeing things that are not there while in the hospital (like he was catching things in the air), and became combative with the nurses/occupational therapist, so then they put him on Adivan sedative which made him non-responsive with his eyes closed all the time and not reacting to our visits at the hospital, he just laid there.
So they moved him in June 2017, into a Rehab Nursing Home in preparation to eventually bring him home again. He was still on sedatives and not really recognizing any of our family during our visits. At the Nursing Home, he now was not eating and they did a procedure to put a feeding tube directly into his stomach. He pulled out the feeding tubes 2 times while at the Nursing home, having to be rushed back to the Hospital for re-insertion. Still, the doctor would not authorize Hospice. My Dad’s time ran out for his hospital/nursing home per insurance and they were getting ready to release him the week of July 24, 2017. So, my mom met with the case worker during that week to find out about in-home care and my Mom was getting ready to do a “reverse mortgage” on their house to pay the $15,000 a month cost the care worker said it would be to have someone take care of my Dad at home.
My Dad passed away on July 29, 2017. We were all in the hall outside his room at the nursing home, waiting for the nurses to get him dressed and fresh sheets so we could visit him; we never got to say goodbye.
anymore. I really feel for your mother and something indeed has to be done for her. This is not a good situation. Medicaid allows spouse to keep house and one car. I don't understand why your dad couldn't apply for Medicaid. She would not lose her home. I am struggling now and sometimes wonder how much longer I can handle this. Bless you all and good luck.
I can relate so much to the initial comment at beginning of this thread and much of what others are experiencing.
I dread going to the nursing home, yet simultaneously cannot wait to see him.
It is a running battle to see that all my husband's needs are met. Dehydration particularly has seen him hospitalised on two occasions. Sheer ignorance I believe when carers take "No" for an answer instead of gently prompting fluids.
I see my husband every day for 2 or 3 hours, apart from Sunday.
Neurologist has said my husband is one of a very small pocket of people who have coped thus long with such a debilitating ugly disease.
I am about to get ready to go visit him. But will join in discussion later.... if someone kindly keeps thread going. It's so very important to feel that you are not alone in your grief, sorrow and feelings of helplessness. Love... that will get you through the next hour, day and week. xx
I want to get my Dad a professional care giver assistance (and to alleviate the stress on my Mom), but we have no means to do this. A friend of our family mentioned Hospice? She said hospice would be covered for in-home care, but need his doctor to signoff on this? How do I even bring up the word Hospice to my mother without her or my Dad getting upset? I do believe my Dad is in Stage 5 of Parkinson’s. Any words of wisdom would really help?
My mother is in a nursing home. She drools a lot. I suggested to the director of nursing that we try something. She asked if it seemed to bother my mother. Actually, it doesn't. If she is aware of it she wipes it with a tissue. It "normal" in a nursing home environment. The NH hates to do treatments for "cosmetic" reasons -- just so the family will be more comfortable.
My husband spent his 10 years with Lewy Body Dementia (like Parkinson's) at home. He drooled a lot. It was especially bothersome to him in his final weeks. He kept a big plastic bowl lined with a plastic bag in his bed as his spitoon. The hospice nurse thought he'd be more comfortable (not just look better) if we could decrease the secretions. She brought in motion-sickness patches as travelers use, to put behind his ear. She warned that I should discontinue them if he developed an overly dry mouth. He was good with them the few weeks before he died ... and they did really help!
hanginnthere, I'd ask his doctors if it would be OK to try this when he goes out. The value of him going out to lunch with you or interacting with others may outweigh any concerns they have about the patch's side-effects. I would ask them or perhaps the pharmacist, though, to be sure there are no other drugs he is taking that it could interfere with.
This is a farily common question in PD and LBD. Could you please let us know if you try this? We learn from each other!
Since this is an older thread, I'm not sure if many posters will see it and respond to your question. Maybe you could start your own thread with this question.
I don't know much about Parkinson's. Maybe those who do will respond to your question. It was my understanding that if your dad cannot function at home, he would qualify for some type of facility such as a nursing home. Have you discussed this with his doctor?