He only gets up to go to the bathroom. He spends the day in a recliner/lift chair and in his wheelchair when he eats. He uses a walker to transfer himself from the chair to the bed to the bathroom. He has been advised to walk every day but he just doesn’t do it. He’s always been exercise-averse. He had back surgery for spinal stenosis and another fall in which he broke his shoulder all within a two-month period in 2011, got badly deconditioned then, and never really got back to any real functional fitness. I also think the sleeping is due to severe understimulation. His vision is very poor (cannot read or really see anything except blurry colors and shapes) and he’s deaf in one ear. He can’t use a touchpad anything because he has an essential tremor. He got some glasses that “read” text and translate it into discreet audio but he just could not get the hang of it. He has a cell phone he carries at all times with big buttons that he learned to use before he lost most of his sight, but that is going now and I dread it when it has to be replaced because it is his lifeline to the world. Adaptive/assistive equipment for the blind is too much for him to learn at this point. So he spends most of his waking hours listening to CNBC on the TV and napping (he does occasionally go downstairs to socialize in the place’s “corner cupboard” but this takes a lot out of him). He also lost his teeth and was in the process of getting new dentures when the tumor diagnosis came in, so the simple pleasures of food have been curtailed. So it’s “sans eyes, sans teeth, sans everything” for him and it’s just very hard for him to enjoy life.
Nice strategy. We will try to put those terms to use. So far, the only pause I’ve gotten is when I ask, “when will you (or we) know the right time to make changes?”
@Mom22039
Convincing them to do anything can be such a challenge. FIL was late 90s and refused to cooperate, was “of sound mind” (Was he? Really?) so we had no power to force him. It was sad and ugly for much of the last year or two.
As I’ve said before, when he took away his car and he finally realized it, he called the police on the sibling who always gets blamed (and who had not been there in a month.)
Our generation had a serious, “we are concerned that if you don’t make these changes, this bad outcome will happen.” Perhaps in your case it would be someone falling on the stairs, etc. Three weeks later the exact scenario we outlined happened and we were able to force them out of their home. Ideally, if he was rational about how things should safely be done, they could have remained in their home until death, but he was doing more and more bizarre things & the driving was concerning, too.
We had our family meeting tonight, and while no one expressed anger and we minimized frustration, it was a failure. They (dad and wife) are not interested in making any changes and getting any business help.
Interestingly, my father called at least two of his lawyers (he has 3) to prep for his meeting with us.
We expressed our concerns about their safety and transitions and we were met with “we’re fine” and the lawyer will help with the transitions. (He denied the physical threats from tenants he’d previously told me about).
We expressed concern about the safety and comfort of his wife (who was on the call) who said that nothing is a problem. (Yikes, that’s not what she vented to me last week — Stockholm Syndrome?)
We tried to guide him to sell the rentals and to sell his share of another business. (Nope!)
We have his “permission” to call his estate attorney to ask questions. My brothers and I are planning to wait about 3 weeks, so we don’t look to be money grubbing.
I suggested we have these family business meetings more often so we can be aware of concerns. That was accepted, but I think we will just dance on the same topics.
Still it was exhausting and we didn’t make any progress. Unless one of our ideas becomes his idea. But, that is unlikely.
Can you contact his lawyers and clue them in to the real situation?
yeah, this is what we see too — the denial and deflection and retraction… I think it’s a great idea to have regular meetings, at least you can prove you aren’t after the money or the business.
Extending a helping hand is only half the work, and taking the help is something only they can do. Too often, the time they need the most help, they are already gone and can’t do it. Super scary and frustrating.
My parents’ power goes out regularly, he is on 02. Rather than use the battery backup we’ve supplied, they sit in the garage and run the car with his 02 plugged in. I told their doctor about this, she inquired, both my parents said oh, it only happened twice and it’s not a problem. He also maintains his 02 doesn’t work “right” and often takes it all apart. Mom knows this is not normal, but where they live, there is literally no choice but to stay in-home. He presents as pretty okay if you don’t have context, and besides doctors only care about medical care they can fix. Everything else isn’t their problem. And short of invoking power of attorney, we can’t do a thing but watch, horrified.
Just a quick note on invoking P of A.
I went to the medical records dept. a few years back to get a record of my mother’s hospital stay. They told me they needed the proxy “invoked.” I called the MS’s office and the MD filled out a form invoking the proxy due to dementia, with my name on it as primary proxy.
Since then, the P of A is also apparently invoked and I speak for my mother, sign for my mother, and if I send the documents, access any account. (I am also a joint holder of her bank accounts.) I have declined meds on her behalf too.
I did not know about invoking the proxy until the medical records dept. requested it and it has been enormously helpful.
@greenbutton it seems your parents do not yet have a dementia diagnosis, is that right? Paradoxically, things got easier when that diagnosis was made.
This is exactly why I am writing a letter to myself that says “Cinnamon, when all three boys present this letter to you, you have to listen to them!”
I disagree - you made progress in talking about the situation. Who knows what your dad’s wife discussed with him after the family meeting. And all the attorneys, although they are your dad’s attorneys, also have an interest in their client’s well being – and making good decisions.
I think spacing out things are good - so your dad can absorb how he can ‘adjust’ to the changes that are imminent.
IDK if you need to keep any written information on the specifics of the threats that he told you about – but keeping some kind of a journal may help. Doesn’t need to be anything fancy - you might want to write down, based on your memory a time line of what has been going on. Then you can just jot a date and a short summary of current/future information, be it what dad said, what has been going on, what dad’s wife said, decline on safety, specific incidents of personal injury or medical hospitalizations/treatments.
At dad’s age and his wife’s age, decline and imminent changes will be happening.
Talking about attorneys, I know when DH and I met with a rather young attorney for getting wills for us (got his contact via the birthing class I was in with our first child), he relayed how he was in the middle of an estate issue where he has billable hours but just absolutely it is gut wrenching for him - many lawyers are not cut out for the family conflicts. Obviously some lawyers are - divorce lawyers for example. I also know my parents’ lawyer, who was working with mom’s wishes years after dad had died and she was not capable of driving anymore – he followed up with her requests on legal things, but when there was no way the state was going to allow her to get her driver’s license back, he sent a very thoughtful but succinct letter spelling out no legal remedy; she accepted the news because mom knew ‘game over’.
So worrisome when judgment is diminished and impacts basic safety and planning for further challenges. Even tougher when options are limited by location, finances, inflexibility, etc. While situations can make for feeling helpless, there are some good suggestions here for ways to optimize one’s impact. Drs can be allies and with encouragement, even usually perfunctory ones may be encouraged to contextualize a patient’s clinical status in terms of ADLs and safety. They can be asked to dig a bit deeper on cognitive concerns or call in a specialist for further assessment or encourage home care. They can invoke the health care proxy as my father’s Dr did when he was coherent and cooperative, but his memory loss made navigating the complex cancer decision tree impossible. Family member/s having a relationship and being known to Drs and attorneys is a huge advantage as things progress. I know that not everyone is allowed this opportunity.
Agree with @compmom that the ‘in-between’ stage may be tougher. We all tend to be change resistant (unless it’s our idea) and even with my cooperative parents, when it was time for the additional care transition, hours were spent weekly normalizing the need for additional help, empathizing with the uncertainties, discussing options, stating my commitment to be sure that any of their questions were answered and concerns addressed. The process was front loaded for effort, yet paid off eventually with peace of mind. Since they were prone to seeing me as a resource, I used that to leverage the concept that options that worked for all of us were likely the best and that while it was clear to them what they were losing to access needed care, the precise things that they could gain might be harder to anticipate. It isn’t always linear and some folks are more intractable than others. I could only do what was possible, gathering info along the way.
Seeing my parents through it all was both a privilege and a challenging commitment. I am in awe of how caring and thoughtful the support all of your parents are receiving is. Wishing every family the best.
My dad insisted on driving until one day, he went to a supermarket 15 minutes from home, and it got dark and he got lost. That was the last time he drove.
It’s a delicate balance for sure. But sometimes reality intrudes on inertia and the door opens a crack. It can certainly be overwhelming for children/caretakers to negotiate.
He’s not having problems of competency, but he is pretty blind. He’s providing some financial documents, but they are not what we expect to see. For example, he gave us a list of all the stock he acquired in this one business, where is is the majority owner, but he did not give us a list of the other stockholders.
He’s quite “with it”. But, he uses “I don’t remember” when he’s being ask about certain things. A couple of months ago, they (he or she?) were (was) physically threatened by tenants. When we asked for them to put a property manager in place for their safety and for a smooth transition, he said no one threatened him/them. I don’t remember became the issue he didn’t need/want to address. I think we need to JUMP on these issues.
The neighbor (a nurse) has been keeping an eye on them in a friendly way. Let’s call her Tracy. According to Dad’s wife, Tracy doesn’t want to hear about the problems any more. My SIL sent Tracy a text message and Tracy hasn’t replied. We were trying to say “let us know if there’s anything you think we need to know about”. No acknowledgement? What does that mean?
So sorry for all of that. A car, a garage and oxygen seems like a dangerous combination!
Short of a fall, heart attack, or stroke, I don’t think either one will give up and accept help or safety ideas.
I’m trying to buy a Duracell 500 powerblock for my emergency medical needs. It’s current on coupon at Costco for $100 off for net price if $400. It will power my small portable oxygen concentrator for 6 hours and my 4 other batteries will give me another 5 hours. The electric company should be able to help us by then or I could buy more powerblocks if my needs were higher.
It’s supposed to hold the charge for about a year and fully charges in 4 hours plugged into wall. can charge up to 7 different devices at a time.
Neighbors get ‘worn out’ emotionally. They often will do less and less for a number of reasons.
MIL/FIL had a very good next door neighbor and neighbor directly behind/across the access alley. We bought next door neighbor Ray a bottle of Jack Daniels every once in a while. Ray also was allowed to use the garage and the car port for his boats. Ray’s wife is a nurse. Both families keep an eye on the house now that it sometimes is not occupied (we have rented it to a family member, and a grand daughter wants to buy the house from the 4 brother/owners).
Yes, it could certainly be a worn out neighbor, or maybe she just doesn’t want to cross the line with and confidences that may have been shared. I may be framed as the villain.
This is my busy season at work and I really can’t take a break. I’ve been trying to get my siblings to alternate visits. Maybe now that they have seen them at two weddings in the last couple of months, the gravity of the situation will drive a change in visits.
I will go up for Christmas (and I’ll stay in a nearby hotel). When I am there, I try to see relatives and others who are in-the-know to get more info.
The hotel allows me to have a break and not feel like I need to clean everything I see. Plus, the house is somewhat open concept (noisy) and they go to bed early. It’s all self-preservation.
Self preservation is critical.
You do whatever makes it easier for you. Such a tough job! We are all hoping for the best for you, trying to do the right thing. xoxoxo
Is hospice something we bring up, or something one of the doctors takes the lead on?
I think it can be either though two docs need to sign off on it before Medicare kicks in to pay for it. In our case the doctor (specialist) called me first (parent was in the hospital at the time) and said he was going to suggest it and I gave the go ahead. He then discussed it with my parent (who was fully competent mentally) who agreed to allow the hospice intake person to visit while still in the hospital. But I think you can raise it with the physician first and ask if they think it’s appropriate at this time. I think some docs are more willing to go there if the family raises it first.