Hi. My family has been dealing with multiple health issues with both our mom and dad for several years now. They still live in the same 2 story house they bought in 1994. My husband and I have wanted them to move for years knowing that at some point their health problems would make climbing up and down the stairs an issue. Well that day has finally arrived. My father has Parkinson's disease (diagnosed about 8 years ago), cancer in his spine (this was discovered when he fell 3 wks ago and was admitted to the hospital), Type 2 diabetes, and heart ailments. I just got off the phone with my mom (she has health concerns as well including arthritis in her knee) as she sent a text earlier this evening that my dad was readmitted to the hospital bc he fell again this morning. They don't know how long he will be in the hospital this time. He was in for 2 wks. the past time, discharged 10 days ago, and now there again. The last time he received inpatient physical therapy. When he was admitted 3 weeks ago I finally got my mom to agree that they should look at moving to a condo. Better late than never! But of course we have hardly had time to catch our breath and now dad is in hospital again.
My brother lives close to them (about 45 min) so he went over there today. He moved one of the beds downstairs so when dad comes home he won't have to go upstairs. Dad is mad about this. He told us not to move the bed when he was in hospital last time. But I don't see what choice we have. Unfortunately, there is no shower on the first floor so he will have to go upstairs at some point. I did mention to my mom about checking into getting a Visiting Angel. I am hoping when they meet with the medical team maybe they might have other suggestions.
VA is on a list of states for NY that is advised not to travel to, or if you do, you need to quarantine when you return. My husband is still going into work, so if I go down there and have to quarantine, he might have to too.
I have 2 other siblings--a brother in Seattle, and a sister in Boston. I tried to get my siblings to have an honest conversation about mom and dad's living situation probablly back in Jan. My sister and was of the opinion we had to honor their wishes and they wanted to stay in the house. But I knew something like this would happen eventually! My husband is mad at me bc I didn't force the issue earlier. But that is neither here nor there--this is the situation and we have to deal with it.
What worries me is that my mom talks like this is all temporary. Like my dad will have rehab and all will be well. She was a nurse so I'm pretty sure she knows Parkinsons is progressive. I really believe she is in denial.
Anyway, I don't know that I really have a question. Just need a sympathetic ear to get it all off my chest. But maybe someone may have some advice on what the best solution would be for the living situation. I thought a condo would be the answer but now I'm thinking my dad may be nearing the time he'll need more than just a place without stairs. I considered having them move in here, but we have the same problem--a flight of stairs to reach the 2nd floor bathrooms. Thanks for listening.
Does someone have POA for them in case? Or at least did they provide HIPAA permission so you can talk to the doctor? Hopefully one of his doctors can help by talking about reality for both of them. He can no longer live independently as his ability to walk is impaired. He has cancer in his spine; it will be worse. I understand your siblings desire to "honor their wishes to remain in their house" but they are not local and probably are using that as an excuse for not doing anything. If you want to honor their wishes, you can but that means that they have to take care of everything that staying in their house requires. They don't get to stay in their house because you enable that to happen. People mislead themselves into thinking they are living independently when they are not. Bringing them to your house is not an answer. Someone needs to sit down and try to bring them to reality. I suggest you ask them questions about how they visualize this going? If they go home, how will he go up and down stairs? Who will take care of house? For us, my inlaws wanted to stay in their house too. They lived there since 1957. She had Alzheimers and he had vascular dementia so he seemed better mentally then he actually was. Fortunately, he realized after I started asking him what he thought and how he visualized living in the house, instead of telling him he could not do it, that they really did need to move.
I read Being Mortal which helped me be able to frame a discussion with him. I did not ask the 5 questions exactly but I used most of it. Get the book (I listened on Audible) or find articles on author, Atul Gawande which have the questions to ask. It really helped me at least.
1. your mother is parallelized with fear and love. It's not really denial--that is too simple a diagnosis. She needs help, and not merely telephone help. She needs someone to hold her hand, make the call with her, and be supported in making good decisions.
2. your father, too, is scared. His home is all he knows and he has a level of control there (dont move my bed). It's unreasonable too expect him to go upstairs for a shower. When parents get angry it does not mean that they dont love you. It is their way of trying to maintain control of a body and life and house that no longer meets their expectations.
3. it is more that obvious that your father, in spite of his 'wished' needs to be in a supervised setting (not your mother caring for him). Wishes are just that --he hoped to be able to stay in his house, but can't.
4. your siblings need to have the talk again and maybe again and again. Each of them is dealing with their own perspectives of life and death, relationships with parents..... Call them. Zoom with them. Sure they will be annoyed, but now is the time for action. Intention is not enough.
5. A condo is no help. Its just a different setting for the same problems. There are places where your parents can both be residents --one in a supervised setting and the other in independent living. Then they can be together.
5. you seem to be seeing things a bit more clearly. Yes, it's one of the hard times in your life. It will take enormous time and energy on your part. But you also have the privilege of helping them when they are unable to help themselves. Let love prevail.
In the short term, you can bodgy up a shower with a flexible hose attached to a mixer tap, and a rubber mat with walls to stand in on the floor. It’s not comfortable and there’s no privacy, but it can be done at the kitchen sink or from a ground floor toilet.
Sympathy – your difficult situation is only too understandable.
I just don't understand my family at all. My husband just turned 50 and I am 48--we live in a 2 story home and are already planning to move when our youngest graduates from high school. We should not need all this space for only the 3 of us by then (6 or 8 years). Plus the maintenance is time consuming and physically strenuous. Don't mind doing it now, but I don't know the last time my dad mowed a lawn. He is going to be 74 in Aug. In 2014 he fell down his basement steps bc he was trying to move his bike down there. He was not hurt badly enough to go to hospital--but it was wake up call.
Last night my mom was on phone talking about going through stuff at the house. She says, "I just don't understand it. I used to come home from work and stay up and get stuff done. (she was a nurse and would come home at 11pm and then go to bed @ 1--she's always been a nightowl) She was talking about how she did things back in 1984 when I was a kid. I told her, "Mom that was like 35 years ago! Your energy level just is not the same." MY energy level isn't the same as it was when my kids were young. Again, denial of the reality of the situation. Feel like banging my head against a wall!
Now the really hard part is how to do this - you have to stop helping and assisting in their bad decision making. Until your mother and dad have a situation that they realize is untenable they won't go willingly and no amount of talking is going to make them realize that. Best of luck to you.
I met a man with spinal cancer years ago. Sadly couldn't walk again after massive tumour removal. After a few weeks of recovery, depression then acceptance, he embraced a wheelchair as part of his new life. His life that would be lived back in his community, not rehab.
His wife kept repeating he was her young fit husband. (He was in fact 75-80s, multi heart probs, cancer, now paraplegic). She said he did not have cancer- the dx was wrong. She would not get the house ready for discharge with ramps, bathroom reno, hand rails etc. He ended up arranging this by phone himself & arranging other relatives to take her in while the work was done. It was apparent his wife could not be any support. Emotional or physical. She was headed for a breakdown the Psychologist said. It was the worst case of denial I've seen. We are all only so tough :(
I trust with loving, support from family your parents can transition to the care & living arrangements they need.
I wish you all the very best.
My 1st thought is that your mom is suffering from a bit of mental deficiency and that is why the reality is not kicking in. She should know what she is facing. Just keep your antennae up for indications that she isn't 100%.
Best of luck dealing with stubborn parents and getting them to be cooperative.
I would also be worried about your mom's cognitive state. If she doesnt understand that she can't do what she did 35 years ago, might that be a sign that she has some cognitive decline?
I am a big fan of sending a bulleted list of your concerns to the family doc, return receipt requested so that you know it's been received.
Does someone have POA for health? Are you all on HIPAA forms for mom and dad?
Its a lovely thought to "honor" your parents' wishes to stay at home, but you all have to determine to what extent you are going to enable that. If it means everyone needs to drop everything and rush to an "emergency" that could be avoided by parents moving, then YOU all get to decide how much you are going to prop up this crumbling system.
3 days running, my mom had "emergencies" that caused me to have to leave work and race to her side across the farthest edge of Brooklyn to her home in Westchester.
On the 3rd day, I told her I wasn't going to do this anymore and that my brother, who would probably keep responding, was going to die of a heart attack because of the stress she was putting him under.
That was a very hard conversation to have, but she knew I wasnt going to budge and that she needed to change her plans.
As soon as dad gets to rehab, you should make sure the discharge planners there have an accurate picture of the house so that they can also have conversations with your parents about long term planning.
I guess you just have to do what you know needs to be done, even if your mom doesn't want to accept reality quite yet. It is what it is.
As you mentioned that house isn't equipped for their needs. Have you requested their opinions about the current situation?
At some point they will be removed from their home, if adult services are summoned.
If your dad keeps needing hospitalization. YOU can refuse discharge into your custody, which will trigger the need for the hospital social worker to locate an assisted living and/or Long term care facility.
In the meantime, YOU need to:
look for an assisted living facility (or long-term care), and
talk with a hospital social worker about discharge-post hospital options, since YOUR home is NOT an option.
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