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His nurse told him he can eat whatever he wants because he is at the end of his life. He is 84 mom is 83. They have been married for 64 years and live at home. Mom is his care taker. He has Parkinson's. He is getting difficult to care for but she is managing. We live across the street and are there everyday some times several times a day. But now he wants to have this family discussion. He wants to talk about nursing homes and assisted living. He understand he will probably be too difficult for mom someday but thinks she will not be able to care for herself. She is diabetic but strong and healthy. She doesn't want to leave her home. She feels as if he is saying she is at the end of her life and she doesn't think so. And she may have many more healthy years. But he may not. I guess my question is what should we talk about in this meeting? What are options?

It sounds like mentally he is fully capable of making decisions and understands the reality of their situation. Is there any way to hire an assisted caregiver to come to their home daily on a schedule? That way they could stay together and in their home as long as possible? It breaks my heart thinking of separating them. Knowing at one point it won’t be an option, but is a daily caregiver coming over 2-3 times a day an option?
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brenbell Nov 13, 2019
Thank you. Yes a caregiver a couple times a week is a possibility. He is capable of making decisions. My husband and I are his go to people he talks to about decisions. My mom is happiest when he is not at home because she feels she has more freedom but I take her to visit him daily when he is in the hospital or rehab. But she gets lonely even though her and I are together everyday its not the same. Yes it breaks my heart to have them apart also but it is beginning to get to much for her. Not yet but beginning. Thank you I will look into a daily care giver maybe for certain tasks like baths. good idea.
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Talk about who will get durable power of attorney both financial and medical.

Talk about getting both of them a living will - what medical interventions does each of them want and not want.

Talk about the budget openly. How much money comes in from all sources? How much money goes out? What's left? Where can corners be trimmed, if necessary?

Talk about what needs to be done to the home in order for your mother to continue living there. How much will those renovations cost?

That's just a starting point. And this is not just one conversation. It's a series of them and they will be hard, perhaps heated, and emotionally draining. You are in for weeks of discussions. To get the ball rolling, get them a consult with an elder law attorney who will draw up the important paperwork.
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Could he be hoping to receive promises that someone will step up to take 24/7 care for both of them in their home? Or someone to care for mom when he is gone?

The only promise you should make is that you will help mom to find the care she needs. Do not promise your services to provide care. We see this so often and when we find we cannot do it, we feel guilty when we have to place them in a facility.

Are their legal documents in place?
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In the book “ Being Mortal: Medicine and What Matters in the End” by Dr Atul Gawande, he recommends five questions be asked.

What is your understanding of where you are and of your illness?

Your fears or worries for the future

Your goals and priorities

What outcomes are unacceptable to you? What are you willing to sacrifice and not?

And later, what would a good day look like?

i recommend you read the book. Here is a link to an interview that will help.

https://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/

The answers to these questions might change but they will help with the larger picture and help the family focus on what’s really important to your parents.

And as you point out they are two different people with different situations. But also remember that many caretakers die before their patients. Something like 40% I think it is.
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brenbell Nov 8, 2019
thank you so much. I will look into that book.
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Brenbell, thank you for the information. If he has the funds, he could do assisted living in his own home. That’s what we did for many years for my parents. They both became disabled in their early 70’s and we did as you are doing, assisting them to stay in their home. Later, with their money, we began to supplement this assistance with professional caregivers. This went on for several years until a sibling moved in with them and we also increased the number of caregiver hours along with more help from family members.

By the time my parents at 86 and 87, entered the nursing home, we had caregivers coming almost 40 hours a week with family members coming in on a rotating schedule. At this point we had been helping to pay for caregivers for almost two years. This was how it evolved in my family. My mother, too, was not as disabled as my father, but she still needed 24/7 care.

It is wonderful that your father is bringing this up with you. You have several options:

1) if finances permit, pay for professional caregivers to take over some of the burden from you and your mother which could allow them to stay in their own home
2) find an assisted living facility which also has a nursing care section for your father and let your mother stay in her home
3) sell their house in order to finance assisted living for them both. I read about this on this forum where a poster’s parents moved into an assisted living facility to be together even though one of them didn’t need any personal assistance.
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Brenbell,

How fortunate you are to have a father who is initiating this discussion and is open to changing his living arrangements. A huge factor in your decision is money. Also, I do not know much about Parkinson and you didn’t say what stage he is in, other than to tell us that his nurse said that he is end of life. What does she mean? Is he ready for Hospice? He seems pretty cognizant. Is your father at nursing home or assisted living level? The first thing I’d do is get a needs level recommendation from their doctor. I do have experience with this scenario, but it would help to have this information along with their financial situation. Are they able to pay for services?
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brenbell Nov 6, 2019
He is not in a nursing home. My mom is his caregiver. He falls alot and has been in and out of the hospital and nursing home since July. He was a pastor so they have had little money all along but saved some and invested some. They have rental homes that they are working on selling. He is not in hospice. The nurse is one that comes to the house once a week since the last hospital stay. That wont last long due to insurance. I think her and his Dr said that because he has parkinsons and there is no cure and he is 84 years old. No spring chicken I guess. We do not know what stage he is in but he can not do some of his daily hygiene things like that.
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Not sure if I'm right, but is this a situation where dad is planning for his decline and demise but mom is thinking about her life as a widow, maybe looking forward to it? Dad is sure right to look ahead realistically where he is concerned, but he may not be thinking that his wife is a separate person, with a possible new separate life of her own when Dad is gone. What I'm getting at here, is Dad looking at selling their house to fund his care? Making financial decisions that will impact his wife's choices?
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brenbell Nov 8, 2019
You are right. She is looking forward to not having to care for him but doesnt want him gone. She is just beginning to come to grips with the fact that he will never be in the condition he was a few years ago. He will only get worse. And that there are things he really cant do anymore. He has not mentioned selling the house but is thinking of living in assisted living with her. Not sure what his thoughts are on what would happen to the house.
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First, kudos to your dad for showing rare maturity, a grasp of reality, flexibility and humility in looking into their future, bittersweet as it may be. Hats off to him!

Soon his care will overwhelm all of his family, not just his wife. Everyone will be orbiting around him because SHE alone will not be able to adequately care for him, and maybe family doesn't want to be conscripted into this lifestyle as well. Your dad doesn't want to do this to people. God bless him.

If I were you, my focus at the meeting would be about the reality of caregiving because it will not be just on her, but everyone and your dad may still not get enough care. Change at your mom's age is profound, overwhelming, terrifying, depressing. Give your mom tons of attention and support, and lots and lots of praise to your dad, and much assurances that the family will help with this transition every step of the way. Maybe come to the meeting with photos of nearby facilities that you've already vetted. Talk about living arrangement options: some facilities can provide independent living for one spouse while the other is in LTC but they are close to each other and can be together every day for as much as they want AND they will both be getting great care. Find out the cost and how it will impact your parents, then offer solutions if necessary (like Medicaid). Come to the meeting with pre-considered solutions. Only have the most necessary people attend this meeting. Any more and it will just add to the overwhelming feeling for them. Lots and lots of assurances that your family is there to help them with every change and task. Maybe don't expect your mom to come around right away. Your dad will probably be able to get her the rest of the way mentally. Your mom may have a romanticized notion of "aging in place" for herself that's not based in reality anyway... Wishing you a fruitful meeting!
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