What can we expect with dad, age 82, with end stage Parkinson's and dementia?

KatieCT, I does sound as though your mother needs support and she needs to make her own health a priority. From what I have read you can ask his doctor to refer him to Hospice, or you can research agencies in your area and contact them directly and they can see if he meets their eligibility requirements. It never hurts to get the process started, there are many more people who have lamented they didn't bring hospice in soon enough. Sorry you've reached this point with your dad.

My husband has suffered with Parkinson's for 30yrs. Over the past 10yrs, Lewy Body's dementia reared it's ugly head and has taken so much of him from us. He is now in a nursing home with 24/7 care and a one-to-one, which gives me a little piece of mind.

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

My husband has end stage Parkinson's and is on a chronic kidney disease diet to keep his kidneys working well enough to get by. We have thought a lot about death and dying. There is a wonderful book out called Hard Choices for Loving People by Hank Dunn. It can help you navigate each decision you make...mostly we can ask ourselves, "Will the benefit outweigh the burden?" If one is in their last stage of life, why try to prolong it with procedures that cause infections. I would just offer water/and pureed/thickened food and let the PD patient decide whether they want to drink or eat. Why make they uncomfortable? One can ask themselves, "Why am I trying to keep my loved one alive? For their benefit or my own?" We have brought hospice in to our home to help guide us in the ways to keep my husband as comfortable as is possible. They have all be wonderful. I would recommend this group down here in Andrews, NC to anyone. Here is a video by Hank Dunn that may help you. https://www.youtube.com/watch?v=knuGYDXngTA

My husband has had PD for 26 years and it has just been steady downward decline. He has been in a nursing home now for 2 years after I was just unable to take care of him
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.

Hi Everyone, This is KatieCT. I posted 5 months ago (March 2017 post above) about my 77 year old father with Parkinson's Disease and how my mother’s health (and weight) was going down hill trying to take care of him from picking him off the floor, bathing, dressing, etc. I spoke in my previous post how we were unable to get him in-home care because we could not afford it and could not get it covered by Medicare/Medicaid in Connecticut. Also, we could not get him into Hospice because the doctor would not authorize as he felt my Dad was not at end stages of PD (If he had authorized it, it would have been covered by Medicare/Medicaid since it was Hospice). My parents don’t have available funds, only asset they have is their house and their social security checks (which checks are slightly over the poverty level requirement to get Medicaid in Connecticut).

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.

I wanted to add, that I am a bit upset that my father could not get the home-care assistance or hospice in his last days.

Oh KatieCT, Your story and update is so sad and upsetting. I am so sorry for what you, your mom and your family went through. I don't understand your doctor not approving hospice? I pray for your mom to find peace, rest and to gain weight and health. You all still have a future, please take care of your selves. God bless

I'm so sorry, Katie.

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.

Perhaps you could ask for hospice to come to your home. I have summoned them for 5 of my family members that were dying. They come to your house, so your Dad can be at home, they will make him comfortable and take care of everything. I am getting close to calling for them as I am 5th stage of PD

I just want to say how wonderful to have a child that cares, and stays to help. My children ran off when b they found out I was broken. Have not heard or contact since they left me at the homeless shelter , 3 years ago.

No one wants to be left in a nursing home. So some of your Dad's problems are the fact that he is left alone and apart from his family. The Parkinson's medications make you very sleepy, tired and weak. You are wonderful to care about your Dad. He does not understand what is happening to him and the Drs don't really know either. Unless you have PD you are only guessing. Talk quietly and privately with your Dad. reassure him you will be there for him. Read and learn all you can about PD and the meds. If he is on myrapex or other dopamine agonists, you may want to talk to your Dr. about Stalevo and better meds with a lot less side affects. Halluccinations and nightmares are very real on myrapex. Sometimes it takes months to find the right combination of drugs for to benefit from. THis can be discouraging, but know it is very common. Have hospice come in, they are a great help. I am close to calling them as I am in 5th stage of PD. I am all alone as my children through me away like garbage when I became broken from PD. They put me in a homeless shelter, just dropped me off, left me at the emergency room at hospital, told me I embaressed them with my dyskensias. So I know the loneliness side of a Disease. Love your Dad.