I think my mom is in denial, any advice?

Snoopy, I am so sorry that your family is facing this challenge.

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.

Can you think of someone else to have ‘the conversation’. Parents often won’t take it from children, but are better able to hear it from a doctor (or a priest or someone else in authority).

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.

Is it a single staircase or does it have turns? Maybe a stairlift could be installed?
I think they run $3k - 6K, but it would still be easier than moving them to a condo.

Of course your mom is in denial. My mother is in denial as well. She is 81. My father is 87. They both have numerous health problems and although they are still mobile, they both have a hard time with stairs. They have to climb multiple steps to get into their house. They have a tiny bathroom that is not handicap accessible AT ALL. We've been on them for at least 10 years to convert a bedroom to a bathroom, but it has not happened.

You mentioned that your father has cancer of spine. Is he receiving treatment for the cancer. Bone cancer cannot be cured; in some cases, it can be managed and kept at bay with medication but besides the Parkinson's, he will now have further impairment with walking. Of course, he is angry with any attempts you make to change his situation; he is angry that he is failing and cannot stop it. But not changing house is not going to stop this from progressing. And your mother is in the denial boat right with him.
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.

Have you been in contact with your parents' doctor about your concerns about them staying in their house long term? Sometimes a dispassionate medical professional can get this conversation started more easily than one of us "kids".

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.

On an entirely different tack, when dad goes to rehab, there will be an opportunity to have their home assessed for safety by the facility before discharge.

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.

A few thoughts:
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.

My fil had spinal cancer and after diagnosed he lasted a month. After rehab you may not have to make another decision

Not unusual for our parents to be in denial over the reality of their declining health and abilities. I deal with that with my mom All. The. Time.

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.

To be in denial one must be aware of that thing being denied;

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.

Unfortunately the answer that no one wants to hear is that they need to move to assisted living, but they don't want to hear that, your siblings don't want to hear that, and you keep thinking that there is something magical that you can do to keep it from being required. I've been in your shoes, albeit with no siblings to fight with. You keep mentioning short term solutions like moving the bed downstairs, some kind of temporary shower on the first floor, a stair lifter, but none of those things fix the basic problem - that your dad needs more help than your mother can provide and that the house can't possibly meet their needs, especially in the coming months/years. They need to move to a facility where there is a mix of independent living apartments and assisted living services. Where my dad is you can have an independent living apartment where you remain responsible for your own housekeeping, meals, etc, so your mother can keep taking care of her "house" and your dad, but you have an emergency call button and staff available 24 hours a day to assist. My dad is in the assisted living where he receives housekeeping, meals, and oversight of his medications. As he needs more help I can raise his "assistance" level. Something like this would work for your parents, in addition to providing them a community of people and activities. Solving their living situation with bandaids of temporary solutions means that this will be a never ending saga. You need to force the issue before your dad actually ends up falling and hurting himself so severely that he will end up in a nursing home and your mother will be stuck in an unsuitable house by herself.

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.

Denial, fear, reluctance, love. Whatever you call it, she wants what she had. It takes acceptance & time to absorb the new situation & make actual change. Sometimes there is not enough time.

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.

$6k a month is not a fortune if it covers all of their housing, food and maintenance needs. We had sticker shock too, except when we added up what my mom would NOT be paying for any longer (property taxes, house cleaning, groceries, gas, utilities, landscaping, snow removal), it was actually quite doable.

I agree that a continuum of care facility would probably be very good for your folks; would not start with independent living apt, though. Both of them will need assistance, and if my friend, who had spinal cancer, is any indication, hospice with serious pain meds could be needed soon. You know hospice doesn't mean your dad will die right away, don't you? Some people are on it for years, some get cured, but he can have it in the facility (in my friend's case, the hospice service moved with her back and forth from her independent local apt to the nursing home, when she got bad). With hospice in place, your dad may not have to ever go to a nursing home, away from your mom; both could stay in the assisted living apt for the $6,000 a month - or less if you can find it. Here it is $3,500 for a couple, but we are out west, in a small town. Hope all of you can get on the same page and make something work for your folks... God bless!

snoopy1122

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.

Your father sounds like he should be in an assisted living facility, or have an aide 24/7 or at least part time to give your mother some help. When my mother kept falling, we got her a hospital bed with bars so she wouldn't get up on her own. The aides put her in a wheel chair to take her anywhere. Your father may not be that bad. Maybe he can walk with a walker. It's hard to move during coronavirus and when one person is very sick. You may have to make do with the bed downstairs. An aide can clean your father, give a dry shampoo, etc. downstairs. Some men prefer male aides. I hope your father and mother will accept the fact that they'll need help. Talk to a social worker in the area. Is your father OK with going back and forth to the hospital, or would he rather have hospice care?

Your parents seem too overwhelmed to look for a condo now. A family member needs to help them and take charge of the move if something is found that they will consider. Parkinson’s is progressive but cancer is often fatal. You don’t say how old your parents are but it may be more realistic to think about moving your mother to a condo after your father is out of the picture. But you and your siblings must be prepared to do the legwork and execute the move. Luckily, there are several hands to help. Get together, discuss the situation, decide which siblings are best at certain tasks, make a plan and write it down. Do face to face phone calls to assess progress with tasks and goals. Work together.

I believe you have the answer, just hoping you don't have to push the issue alone. Yes both parents are in need of help, especially since Dad has had 2 falls so close together. When we found Mom was failing, after Dad has passed, I had made a trip to see her (closets child- 1200 miles away). While sitting next to a gentlemen on the plane and getting into a conversation (I was upset and he could see it). Anyway, he offered some advice.... "See what is really going on during this visit, and then talk with your brothers (no sisters), and tell them what is happening and that you all need to talk with your parents (together, literally if possible). Present a united front on what needs to be done. This can be helpful, but sometimes difficult as not all of you may see the same things.

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

Hi, my late father-in-law had Parkinson’s. He lived with his wife in their two story colonial until going into the hospital one final time. It is doable with time and money.

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.

SO sorry about your dad's problems, your mom's problems, and your frustrations. I'll ask my 2 usual questions:

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.

We can’t keep our elderly parents safe all the time. We certainly can’t control every outcome. Sometimes the best attitude is “whatever happens...happens.”

The situation you describe, that is, 2nd floor bedrooms, showers, falling more than once, is just the situation that at least your father needs to be in assisted living. I have two situations that may fit here. 1) a friend of mine and I were in a caregiver support meeting and she told the group she was unhappy that her husband fell for the 2nd time that week and she had to call 911 for help. The second time he fell he was taken to the hospital. This would happen weekly, and they lived on one floor, no stairs. At the time, she knew he had lost his memory but had not even been taken for any kind of diagnose even though he consistently lost his wallet, lost all the credit cards and fell a few times every week. She was unable to pick him up, help him up, nothing. He was on floor a good while till EMT's came.
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.

Would your parents consider a ranch style (single floor) home in an over 55 community? It is possible to get homecare fr private agencies or your local senior agency. These homes have bathrooms set up for disabilities( grab bars and sometimes walk in showers with seats) However, moving is a big project! The homes in these communities are affordable and easy to maintain. It is difficult to accept change, I know. So many elders will not see advantages of such a move. Still, more private than AL and less expensive.

I'm moving into a Continuing Care Retirement Community. Children insisted that my decision to move out of the house to a one floor apt, was not acceptable because with my aging health issues they would probably be choosing my nursing home in a few years. This way I'd move only once more for the rest of my life. Nursing or dementia care is in the same community.

You don't have a lot of time to sell a house and buy something else before he's going to be sent home again. Re-evaluate the house. More than likely there is a toilet downstairs that can be used. Is there a closet or other area next to the toilet (plumbing) that can be used to create a roll in shower for dad (and mom eventually). Be creative in thinking about adding a shower - pantry area next to kitchen plumbing, a wall near to the washing machine area where a shower could be located on opposite side. Or, consider a walk in tub (tall sides w/seat) that could be placed near some of your plumbing to get a bath area downstairs.

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.

Snoopy, how is your dad doing?

Is mom doing better at facing the reality of the seriousness of what your dad's diagnosis is?

Parkinson’s is called “The Fall Down Disease”. My bullheaded father has fallen over three dozen times in the past two years, somehow with no major injuries. Parkinson’s affects the muscles, they just don’t hold them up anymore. Add bone cancer to that? Crazy!

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.

You mentioned the DC area. I do know of some subsidized assisted living in the MD suburbs, so there probably is in VA also. Someone will have to come down to make arrangements to move your parents, but you can "shop" online. Mom can't do it herself; it is too emotional for her. Dad can't help. There are eldercare services and committees that help people with advice, finding the best place to live, and making arrangements for the move. Figure out with your sibs what your parent's monthly budget is. Start looking for "independent living" with assisted living options. In the DC area that means an apartment with meals provided 2x daily, linens and weekly cleaning service. They can tell themselves they are still independent. There will be no steps and there will be an emergency call system. If they drive they will have a parking place and can come and go, subject to social regulations. Additional help can be provided as needed, at additional cost. When you look at the money, find out what it really costs them in their own home. It might be less of a gap than you think.

Can you also search for any AL that might offer respite care? Even if it is not in the "right" location, or not the place you prefer, this would just be for a trial period, say 2 weeks.

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.