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.
My parents are both alive, ages 91 & 93. Wanting to be independent, yet in denial of the care they require.
My mother is exhibiting cognitive decline, as well as weak spells that make her feel like dying. She has had three ER visits since this pandemic. Experiencing HBP spikes along with vertigo.
They had been quarantining with my husband and I in our home.
It coincidentally worked out this way, which was a blessing (for me, as well as for my parents)
My mother was recuperating at my home from a recent cataract surgery the end of February.
My dad was at their home, and was being looked after by my two sisters, one that lives with my parents, the other sister lives out of state, and came to assist.
My dad was missing my mother after a couple of weeks, and wanted to be with her, so he came to our house, and then that same week, the pandemic was issued.
I couldn’t allow them to go back home under these COVID19 restrictions.
My sister that lives with them, has her own emotional and physical limitations.
(This is another complicated matter.)
*My parents took her in 7 years ago, after she got divorced.
They have been lovingly, enabling her.
I’m my parents youngest of 5 children, and was designated to be their POA, as well as, contact person on their medical directives.
Being the youngest in my family, my sister that lives with them, vehemently resents, and doesn’t understand, why I have this authority, because “she LIVES with them”.
My parents “sheltered in place” with my husband and I, for almost 4 months since this quarantine was issued. ALL of my parents needs were being taken care of.
They were treated very well.
“Social distancing” from my sister, served as a blessing in SO many ways.
Prior to them coming to our house to stay, I had been going to my parents home 2x a week before all of this,
(I live about 1/2 hour drive away,) I was pitching in more, since last year because the sister that lives with them, was “too overwhelmed” caring for my parents.
It’s a very dysfunctional arrangement in their home, to say the least.
She doesn’t work, and lives with my parents, free of charge, her “rent” is that she does chores for them. She also has a credit card, my parents pay every month for her, and she has one of their cars to use.
I was grocery shopping, taking my parents to Doctors appointments, bringing them meals, doing their bills, and cleaning. Then, I’d get to go to my home and manage my own life.
So having my parents under our roof was a relief and a blessing.
After being they were here for a couple of months, I had been giving them my best, the “natives started getting restless”, wondering when they could go back home.
I told them, it wasn’t safe yet because of the COVID19.
By this time, I had their mail reversed to my address as well as their daily newspaper. It was an adjustment, but it was a relief for me, not to be running to their house back and forth, not to mention having to deal with my difficult sister.
To make a long story short, they insisted they go back home.
i told them that I was NOT going to drive them home.
i didn’t think it was wise or safe. I told them if they wanted to go back home, they’d have to arrange their own ride back, and under the COVID19 restrictions it would limit me visiting them.
I am an almost 6 year breast cancer survivor, and my husband is over age 60. (We are in the vulnerable category)
My cousin was called by my mother, and she and her husband came to get my parents.
My husband and I bought life call buttons for my parents since they returned back home, We also inquired to the VA , for my Dad, to send a nurses aide to come help with his bathing, it’s too much for my mother now.
I don’t know where I’m going with this, I think I needed to vent, and to let people out there, who are reading this, they are not alone.
This story won’t have a happy ending, we all know the eventuality.
Dealing with denial, is SO frustrating, as well as difficult siblings!
I do not recommend that they live with you. Best of luck.
You haven't mentioned any cognitive decline, so unfortunately the decision has to be theirs, but that doesn't mean you all can't get and stay up their butt about it! Even if you all offer to pay for the respite, excuse being that he needs to work on strength (get PT there) AND adjustments need to be made to the house (not that you are going to do any!) or call it a mini-vacation, to let him recuperate.
See if doctors, nurse, SW or rehab can suggest any places that offer respite care. This would just get them introduced to AL life and see how nice it can be! Too often there is a preset negative idea of what AL is and sometimes once they get in and see how nice it is and how friendly people are, they decide to stay! One can hope!!!
The only time I have even seen any was when looking for a place for our mother. I didn't check out the "community care" places because of the steep cost just to get in (still haven't a clue what they do with all that money!) One place I didn't like at all. Another was okay, but the location was pretty sh***y and knowing that I would be doing most of the supplies and visiting, nope. Plus it was about 800/m more than the place I thought was best. If I had to move to AL, I wouldn't hesitate to go where mom is (she's in the MC.) Although the cost has gone up every year (understandable), it is only now, 4 years later, just a little more than that other place was back then!
Prices and amenities vary a lot. Be sure to take notes and compare. Mom gets room, board and 1 hr of personal care/day - sometimes there are extra charges for cleaning the carpet or extra laundry when she has accidents. The big jump will be if she drifts over 1 hr (last I checked it was about 1k for the next hour, so if she needs 10 min, ouch!)
But, IL and AL are different, less expensive (a bit more since there are 2 people, but less than paying one each.) At mom's IL, although you can cook, clean, etc yourself, you can also arrange to have/pay for these services, so IL *may* work... depends on how well your dad "rehabs" or can get around if he needs walker or wheelchair.
IF dad insists on going home and refuses the respite care, DO LIMIT any help you give them - make it plainly obvious that their "plan" isn't going to work. Hopefully it won't result in a fall down the stairs if he goes home. You've already said your house is no better, but NO NO NO to taking them in!!! The less you can do to "help", the more likely the light will go on.
Definitely explore local EC attys as well before he is discharged. Many will give you a free intro, say 30 min, so draft all questions and take notes! If/when the light dawns, then bring them in to have all documents done up (POAs, will, trust if needed, etc.) They can also assist with VA and Medicaid applications, if those come into play.
IF you can find a respite AL AND can convince them to 'try it, you might like it' (and at the very least, get a break before going home), perhaps it will be enough - mom is already leaning, however little, in that direction. This might help push her, if she sees how easy and nice it would be! Reduces what she has to do, is safer for dad, frees up time for her to enjoy herself with others, etc.
Dad’s Doctor insisted on a Nursing Home after he went way downhill. He made a very good point. Parkinson’s patients need the stability of 24 hour supervision. If they medication in the middle of the night, they get it. They need to keep the same level of dopamine stable in their body at all times. My Dad is so much better with that stabilization.
I hope you get your Dad somewhere he can prosper too.
Is mom doing better at facing the reality of the seriousness of what your dad's diagnosis is?
Then, whether dad likes it or not, relocate an entire bedroom to the downstairs area for both of them. Tell him and mom if you don't get them to the more secure lower floor, you could be responsible for leaving them in unsafe home. The alternative would be they have to relocate to some sort of facility like assisted living or nursing home and deal with the house later.
My Aunt did same, a cont care place. It did take 6 mths to settle in & she said she did have to push herself a little to join groups, go to happy hour, have dinner in the dining room once a week etc but now she has many friends & you can tell she is happy.
Wishing you all the best for this next adventure in your life.
We advised her she needs to get him reviewed by the doctor and a specialist for dementia. She knew he had dementia, but again, blind eye. After several months she finally got him diagnosed, and immediately he was placed in assisted living/memory care. And he continued there, as well for next 2 years. These are the types of situations with dementia patients and falls, esp. that require professional care either in home or in a facility. The second issue is the mom and stairs. I don't know how old your parents are, but I can tell you, myself in my 50's working overseas for the military, I was living in a 2 story apartment. I hadn't lived in 2 story place for 20 years. I had bad legs and hips. Daily after work and on weekends, I made multiple trips up the stairs where the bathroom was, each day, many times on weekends, one step at a time, and sat on my butt going down the stairs every time; luckily there was railing. I am now 30 years older and 81, and still have to go up one step at a time. And how many times does my toe of a shoe not make it onto the next step up. I am still a fall risk. I now live on one floor and don't fall as much, except when there is a piece of gravel in my pathway outside. Seniors don't put things in perspective because they think they can do it, it's just a little pain. The older one gets, just a little harder it is to get that foot up to the next stair, let alone the whole staircase. Please try to reason with your parents or advise their doctor so he can talk with them on the severity of falls. I either gave the nurse at check-in my list of concerns, and the doctor discussed them with my husband as if I was not involved. He handled it gently, by asking my husband questions that confirmed my concerns and had him evaluated by specialist. I hope this helps to guide you on how to approach the parents--get the doctor or nurses to intervene/help.
Is it safe for your mom and dad to live in their home?
From your post it appears that their living quarters may no longer be safe to negotiate. SO, it appears that the time to move has come.
Are your parents preserving their health in their current situation?
Also, probably not. Besides the Parkinson's, bone cancer is usually not a primary cancer but a metastasis from another area. How aggressively do your parents wish to treat this? If they opt for palliative care, then a move to a place that is easier to navigate and keep up would be a better option. I would also suggest they move close to a family member that does not have to work and can be their advocate/advisor/assistant.
They added a lift to the stairway that he would sit in and ride up and down to and from the second floor. I’m not sure how quickly these can be installed, but you can check with a medical supplier in your area.
When that became too much for him to manage, a bed was placed in the first floor family room. However, unlike your parents’ home, theirs already had a full bath attached. If your parents are determined to remain in the home and have the money to do so, they could add a full bath to the first floor, but obviously that takes time and is very expensive.
They also added a ramp to make getting in and out of the house easier with a walker, wheelchair and/or scooter. Again, takes time and money.
They also hired an almost full time aid to help out (they were both in their seventies).
However, everyone’s experience is unique, so even with the modifications to their current home, your Dad’s experience could be different and another living situation might be needed.
I wonder if with 2 recent hospitalizations the hospital will consider his living situation to currently be unsafe for him to return to (due to having to go to the second floor to use the bathroom) until modifications are made. I don’t know.
It does sound like your Mom is in some sort of denial. It’s hard, I know.
If only we all could see the future to know what would be needed? However, given 2 recent hospitalizations and the idea that the past can repeat itself, it does sound like something needs to be done now.
I feel for your situation. My elderly Mom fell & broke her hip at the end of February and then fell again in June and broke her leg. No rest for the weary! She does not have Parkinson’s, but I can relate to what you are going through. Her assisted living facility kicked her out saying they wouldn’t take her back after two recent falls with serious injuries so we had to find another facility.
I hope something here helped. Best of luck to you and your family.
A single floor home is important and sounds like vital. In home care can be done, check into it. Ask them about a PPOA (Full Power of Atty) see a lawyer with them and have it explained. Assuring that at all times that their wishes and best interest will be first always. The hardest part is the distance, physically between homes.
There are some hard decisions coming and having all you siblings on board will make it somehow a little easier. Prayers, hugs and understanding coming your way. Good luck
I am so sorry about your parents health. I’m thankful that your brother is close by.
Have you asked your dad’s doctor about the spinal
cancer as in what stage it is? Surgery planned?
It seems like you need to know his care plan before you can make any plans for housing. Does your brother interface with your dad’s doctors? It’s so hard now with Covid. I wonder if a couple of you could Facetime with the doctor? If you don’t have HIPPA release maybe the doctor would call from your dad’s room or the hospital case worker could help you arrange a meeting?
Best of luck with finding the right path forward.
Some listed items don't count with condos, but still... ANYONE considering in-home vs AL, remember this:
1) the hourly rate goes UP at night, overnight, weekends and holidays for in-home aides
2) if there are medications to be dispensed or medical treatment or interventions, jack up the cost as you need a NURSE, not a CNA.
3) add in ALL the current expenses to the cost of the aide/nurse
4) when someone falls or has need of help, it is a lot easier & closer in AL!
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.
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.
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.
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.
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.
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 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.
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.
Fall on front steps.
But a ramp over back stairs makes it work. For now.