Living with Older Parents

[BlueIris]

I was wondering if anyone else is living with their parents and what tips you might have. My parents are 83 and 88 and both have cancer and other health problems which actually have a greater impact on their mobility and strength than the cancers do. They walk and take care of themselves now, live in a house and have a housekeeper/helper now, but it isn’t going to be enough for very long. They really can’t drive safely any more.

 

I knew this was coming, so it isn't a surprise or imposition. I moved to this part of the country several years ago to be closer to them. But the time has come so I am a bit worried about setting this up the best way possible. We’re beginning to look at larger homes set up for some privacy and autonomy, but in the same home or on the same lot, such as a guest house, MIL quarters, or casita.

 

My first thoughts are-- to make sure they can be on one level (necessity) and enough room for wheelchair use in the future, also to have emergency buttons installed.

 

If you’ve done this, what have you learned? Are there things you changed over time or would have done differently? Thanks in advance for any wisdom you could share.

[d0nnivain]

I moved within 10 miles of them. I knew we couldn't all live under the same roof.

 

 

I got them a live in caretaker ($225 per day vs. $350 for nursing home). It worked out much better because I would not have physically been strong enough to do certain things for my mom in the end. I did have the bathroom remodeled -- ripped out the tub & installed a shower, put in a shower chair. The whole remodel all new everything including copper pipes & safety grab bars was still cheaper then those step in tubs they advertise on TV.

 

 

When my mom died, DH & I talked about getting a 2 family or house with an IL suite to keep an eye on dad. He passed before he had completely incapacitating physical limitations.

[BlueIris]

Thank you, d0nnivain.

They want us to live together. I think it’s doable. We shall see….

Yes, I’ll have to redo the bathroom. But I’ll keep in mind the possible need to have space for a live-in caretaker one day as we consider houses. I’m glad you mentioned it.

[d0nnivain]

Good luck.

 

It's a heart breaking thing but for me it was a promise to my mom that I would never put her in a home. She had kept her mom home with a daily not live in caretaker for years.

 

I do have a lot of peace knowing that I did the best I could for them & wish you the same.

 

Don't forget to do all the paperwork things too: power of attorney, you added to bank accounts, you having a key to any safe deposit box, an updated will, some Medicaid planning if that could be an issue.

[BlueIris]

Good luck.

 

It's a heart breaking thing but for me it was a promise to my mom that I would never put her in a home. She had kept her mom home with a daily not live in caretaker for years.

 

I do have a lot of peace knowing that I did the best I could for them & wish you the same.

 

Don't forget to do all the paperwork things too: power of attorney, you added to bank accounts, you having a key to any safe deposit box, an updated will, some Medicaid planning if that could be an issue.

 

Like you, I'm going to do what my mom did. It really helps to have an expectation or standard that our moms set. I'm glad you did the best for them and it is heart breaking. You're so good to the people around you, family and friends.

 

Yes, the estate planning, trust, titling, POAs are done. I’ll look into Medicaid but don’t think it will be necessary. But after 2008/9, it’s best to be informed.

 

My dad has been the one moving this forward, probably to make sure my mom will be taken care of. He thinks he has very little time. I suspect he is not telling me/us something. They've been married for over 60 years and I can't even imagine life without either of them, much less how one will handle the loss of the other. I love them and they've done so much for me.

[Tayla]

BlueIris, After ten years of aiding and living with my Ailing Mother, I learned a few things:

(1) Have a living Will done- Authorizing THEIR wishes on medical procedures. Abide by them. Most states have websites for the forms , it doesn't need a lawyer, just some heart to heart talk on their wishes.

(2) Home safety is key. Carpets/Hard floors, Oddly each creates problems, Particularly with walkers and wheelchairs.

(3) Home fire/safety alerts. Sometimes as they get hard of hearing, having the Lights Flicker as a warning message, can help them. Night Lights and proper lighting is key.

(4) Keep them in touch with church or activities that get them motivated ( within their capability level)

(5) BIGGEST THING is though- TO have compassion and patience's, You are helping them write their final days, may it be with love and kindness, They deserve dignity and regard.

And for yourself- Be gentle with yourself too, take some time for you.

As someone who lost their parent, the biggest regrets were not being prepared for the medical decisions that would come hard to make.Loving my mom was easy, making those decisions were not.

[Downtown]

Iris, I learned three things in dealing with my parents before they passed. One is that it is normal to feel guilt, guilt, guilt -- no matter how much you do to help them. It is simply impossible to feel that you are able to repay the two people who brought you into life and loved you unconditionally.

 

A second thing is that knowing they are going to pass does nothing to prepare you for the actual loss. It is a life changing event that you cannot prepare for emotionally -- and, indeed, cannot even imagine. Instead, it is simply something you have to experience and survive. On top of that, we all realize that -- once our parents are both gone -- there no longer is a generation barrier standing between us and death, i.e., we've moved to the front of the line.

 

And, third, I learned that elderly people typically do not die like you see in the movies. Because modern medicine usually keeps the elderly holding onto life even when they are very incapacitated, they usually do not say loving things right before passing. Instead, most of them are on powerful drugs -- or have experienced strong changes in body chemistry -- that can cause them to behave in very strange ways (e.g., paranoid) so that they are no longer behaving "like themselves."

 

My mother, for example, became paranoid about my sister and did not trust her. That started several weeks before my mother's death. Similarly, my aunt became so paranoid about her only child that she told the nurses to keep him out of the hospice. He was so hurt by her "rejection" that he decided to stay home while his mother lay dying at the hospice -- until I explained to him that her strange behavior was simply the result of the medications and body chemistry changes occurring. On hearing that, he immediately drove to the hospice -- where the two of us sat beside her bed for several days until she passed.

 

I therefore wish you and your parents the very best, Iris. I hope things go as smoothly for your family as is humanly possible.

[BlueIris]

Thank you, Tayla and Downtown. And thank you for the good wishes.

 

Tayla,

I’m glad you mentioned the social element and the flooring. In case anyone else reads this, there’s a site called ageinplace that’s been helpful, but I was glossing over the flooring issue until you mentioned it. I need to keep that in mind as I consider houses and remodelling. Moving my mom from her friends is the greatest hesitation about this whole move. They mean so much to her. In terms of house-hunting, I really want a huge dining room so that we can have friends over for dinners and yacking. And I’d like to have some little conversation areas so she can have friends visit. Maybe we’ll need to be frequent uber users to get her to her buddies. You’re mentioning it made me think of how to accommodate that. My mom needs friends. My dad needs land, to garden and putz around. The garden is much easier to provide.

 

Downtown,

Thank you for pointing out how different the medical treatment is now. I hadn’t thought of that and have been assuming that it will be like my grandmothers’ deaths in the 1980’s. That’s good that you told your cousin so he could be there comfortably. I can’t even imagine their dying, how my kids and I will handle it. “Humanly possible” is a good reminder. This is a very human process.

[preraph]

You have to be prepared because that is their home and if they're like most people, they don't want to leave it. You might look into a ramp so they can get outside and see if there are quarters very nearby for you. One person can't take care of them once they get to where they must be turned and are bedridden, so you'll always need a helper. You might think about a travel trailer, but check your city codes first and see if you'd be allowed to plug in in their driveway. It's illegal some places.

[d0nnivain]

End of life care & dying with dignity are tough things. I knew exactly what my parents wanted but all the doctors & nurses made me feel awful about saying no to certain things at the end.

 

My mother was unconscious for 3 days after her last stroke. Doctors I didn't know pressured me into authorizing all sorts of painful expensive tests. I kept saying no. Finally I asked one whether what was shown in those test results was going to change how he treated my mom. She had a heart condition; she'd had a stroke, she had numerous orthopedic issues & advanced Alzheimer's. He admitted that the painful test results would not change anything. So I said don't do them. He said he might be able to bring her out of the coma. I said to what extent. She already couldn't walk well & had trouble thinking (meaning she had no idea where she was or who people were). He said she'd wake up but probably couldn't talk & couldn't use the left side of her body. I was horrified. I said it's in God's hands. Let her pass in peace. He acted like I said to have her face a firing squad.

 

Same thing with my dad. He had emergency brain surgery. To do that they had to take him off all his cardiac meds. A few days after the surgery, he had a massive heart attack. They said let us treat the heart attack but if they did it was almost 100% guaranteed that they'd turn my dad into a vegetable. I refused the treatment. They kept saying he'd be alive. I couldn't make them understand he wouldn't be living. He died less than 24 hours after the heart attack

 

Both my parents had 15 page living wills drafted by a brilliant lawyer but the doctors kept trying to get me to violate their wishes. The doctors made me feel awful. I was so upset that the money grubbing medical establishment only cares about money.

[BlueIris]

d0nnivain,

That was hard to read. I’ve heard about this problem and the conflicts that arise regarding directives, medical professionals and agents. It must be so difficult at an already difficult time. I don’t know if it will hold up or have the desired effect, but we put a clause addressed to professionals in the medical directives that authorizes suit against any professional who does not follow the directions of the agent, in some circumstances. ??

 

preraph,

I agree that it would be difficult to leave MY home, but my parents have moved so many times in their lives (~ 23) and my mom started packing up and remodeling the place for sale in December. It seems odd to me, but that’s the way she is and always has been. Their home now is perfect and well-organized for long-term care and end-of-life care. How we got to this decision is a long story, but it boils down to my dad wanting to make sure she’s not alone in a house when he dies.

 

I’ve found a house that seems great. We shall see.

[Auspecial]

End of life care & dying with dignity are tough things. I knew exactly what my parents wanted but all the doctors & nurses made me feel awful about saying no to certain things at the end.

 

My mother was unconscious for 3 days after her last stroke. Doctors I didn't know pressured me into authorizing all sorts of painful expensive tests. I kept saying no. Finally I asked one whether what was shown in those test results was going to change how he treated my mom. She had a heart condition; she'd had a stroke, she had numerous orthopedic issues & advanced Alzheimer's. He admitted that the painful test results would not change anything. So I said don't do them. He said he might be able to bring her out of the coma. I said to what extent. She already couldn't walk well & had trouble thinking (meaning she had no idea where she was or who people were). He said she'd wake up but probably couldn't talk & couldn't use the left side of her body. I was horrified. I said it's in God's hands. Let her pass in peace. He acted like I said to have her face a firing squad.

 

Same thing with my dad. He had emergency brain surgery. To do that they had to take him off all his cardiac meds. A few days after the surgery, he had a massive heart attack. They said let us treat the heart attack but if they did it was almost 100% guaranteed that they'd turn my dad into a vegetable. I refused the treatment. They kept saying he'd be alive. I couldn't make them understand he wouldn't be living. He died less than 24 hours after the heart attack

 

Both my parents had 15 page living wills drafted by a brilliant lawyer but the doctors kept trying to get me to violate their wishes. The doctors made me feel awful. I was so upset that the money grubbing medical establishment only cares about money.

 

 

 

I'm so glad you stuck to your guns and took real care of people you love, rather than suggestions from strangers who have unknown motivations.

 

 

These same strangers quickly withhold basic care from people who don't have health insurance or now, after OC, have only catastrophic coverage.