This week, we discussed it. My brothers and sisters. My mother. It’s our time. Is wasTime for THE Talk. No, no, no! Not the birds & bees talk! It’s time to look for ways we can keep my increasingly frail mother safe, healthy and as independent as possible. Not in her home, alone, anymore. We recently all agreed that she needed “companion-care” every day of the week at her house. We increased from 3 days to 7 days assistance every morning to help her up, ensure she gets dressed, eats a healthy breakfast, takes her medications and checks her blood sugars. The caregiver is also supposed to fix a main mid-day meal and make sure there’s something light mom can get on her own for dinner. Plus her companion can do any light housework or errands mom needs done. She is also to generally monitor Mom and make sure she is safe and healthy. In addition, we engaged a home health agency (nursing staff) to assess and monitor mom from time to time to help coordinate her medications and treatments with her doctor. Again: emphasis on safe and healthy.
Even with all that in place, I recently had to have her admitted to the hospital when a persistent bronchial wheeze prompted me to make a surprise visit. I found her still seated at the kitchen table, two hours after her lunch, staring into space and unsure when or what she had eaten and with no clue as to whether she had taken any insulin or tested her blood sugar. Not safe. Not healthy. Worse, her pill tray indicated she had not taken any of the medications in her automated/alarmed pill tray for the last day and half and I could not determine what she might have taken instead during that time as other medication bottles and an older pill tray with some meds in it were scattered all about. I feared that the accordian sounding wheeze in her chest that had now gone on for over a week together with the coughing spasms it was spawning were putting a strain on her heart. Of course it was Saturday. The on-call physician from her regular doctor’s office agreed that this all warranted a trip to the E.R. Eight hours, a nebulizer treatment, blood draw and urine specimen later, she was finally admitted for a three day stay.
My partner (an R.N. who works for hospice) calls this sort of hospitalization “buffing up the old folks.” Either they will maintain and grow stronger again, or they will sink back into their frailities once released.
It’s not clear which of these Mom is going to be. But one thing is certain; staying alone for long stretches is not going to work. This has been coming for awhile. The seed germinated even while dad was declining in the last three years and since his death last year. Now Mom, at nearly 84 years of age, is progressively more isolated and lonely; her health has suffered as a result.
She will likely be with us for a good deal longer with proper care. But it seems that proper care is going to require significantly closer attention and supervision and very probably, a move somewhere closer to myself or one of my brothers (I am the closest geographically and I’m a 1.5 hour drive away).
Are you in this situation too? Many older folks find themselves with this dilemma.
I once had a client, Mrs. L., 97 years old, and still driving. I saw her in her home. She was dressed appropriately and got around very sprightly, even up and down a very narrow steep staircase to a basement apartment she rented out. She was very intelligent. Well educated and highly articulate. Her eyesight and hearing seemed to be entirely intact. Many books lined the walls and she had been a college professor for many years. The house was both neat and clean (including the bathroom and kitchen, something I always try to find an excuse to look into as disorder there is a good sign of trouble and also sometimes a health hazard).
Mrs. L. called me because she was having some problems with a plumber who she had hired to do some work downstairs in a basement apartment. The work took several days so she had given him a key to the basement door. She believed he was still coming in her house and stealing things – her house and car keys, her checkbook, her eyeglasses, other important papers. She also believed that later, he was bringing his girlfriend with him and “using” the other bedroom. She could hear them on the other side of the door or wall, but never saw them. She cowered in her bedroom when they came. Days later, her things would mysteriously re-appear – in another place. We talked for about 2 hours before her story started to come apart at the seams. Details became fuzzy. She contradicted herself a few times. As the afternoon wore on, and the sun started to sink, it became clearer to me that there was no plumber and things were not being stolen. She was simply misplacing them and forgetting where they were. She said she knew that people believed she was “cuckoo” and “batty.” She insisted she wasn’t but refused to visit with her doctor and let him offer an opinion. Indeed, she had fooled most everyone who came by – because she was comfortable in her own environment and functioned pretty well during daylight hours. This included the police department and Adult Protective Services who had both been out several times. Was she in danger? I don’t think so. Was she suffering? Almost certainly. Every couple of months, she calls me to tell me more about the “robbers” which claims is getting worse. I will then call Adult Protective Services to request a “welfare check” (typically someone from the police or sheriff’s department goes and checks up on a person in a welfare check). There’s little more we can do until she really isn’t able to function there or something worse happens.
I like that story as an example of just how well people can function even with dementia so long as they are undisturbed from their routine and familiar environment.
That is why I find it useful to observe older folks outside of their normal environment. Even if it’s a different room from the one they normally sit in (typically “their” chair in front of the TV). Why? Because in their comfortable, day to day setting it’s easier to fool you. Mom or Dad can find their way about more easily, even with severely impaired eyesight, they know exactly where everything is. They have the steadying hand grips memorized, they get visual and audio clues from familiar objects and sounds. They don’t get confused or disoriented as easily in their little nest. Or, they do, and like my mother, can pull themselves together as long as someone is there. A surprise visit caught her “out of it.”
Best bet: Take them out for a few hours. Go to church, to a friend’s house, better still, an ice cream cone or pie & coffee. See how they cope in a setting where they are NOT as familiar. Throw in a bit of background noise and people moving about – just a bit, not a cacophony!
First of all, they will enjoy this change of scenery and time with you. Even if they resist at first (inertia is a powerful force) gently insist. Even the slightest activity and stimulation is good. Food is a good motivator as it is the highlight of every day for them.
When friends and family come around, do they participate in what’s going on around them? For sustained periods of time? (more than a few minutes) Frequently, older folks who are struggling – with cognitive issues, hearing or eyesight – will sit in the midst of a gathering, but no one notices that they are “tuned out.” They are physically present but quite isolated by confusion, poor eyesight (can’t tell who’s there) or inability to hear or understand everything going on around them. This makes participation very difficult. Try playing a card or board game with several people involved. Turn. the. T.V. off.
I like to find out how many medications they are on and see if they can identify them all and what they are taking them for. Medication interactions, misuses, and overdoses are extremely common in older people. If they can’t accurately review them with you – you need to get with their doctor. Medications can cause dementia-like symptoms and other problems that can be eliminated. I’m a Juris Doctor not a Medical Doctor so I don’t give medical advice, but my experience with my mother has shown me again and again that thanks to the number of doctors prescribing plus the number of medical issues she has, medication errors happen. They happen a lot. They happen because doctors frequently to not tell each other what they are doing; pharmacists are too busy to pay attention and there may be more than pharmacist in the mix. My mother gets some drugs at her local pharmacy, and others via mail order. Then there’s the plethora of over-the-counter meds — Mucinex, Tylenol, Cough & Cold syrups, laxatives and more. All with potentially serious interactions with prescription medications. Then there are the supplements like mega doses of vitamins. My mother is loathe to throw expensive medications away once the course of treatment is over. As her short term memory begins to fail, we found we just weren’t sure what was supposed to be in the pill tray and what had been discontinued! Two that were discontinued were prescription pain meds – one was the powerful, highly addictive narcotic, Oxycodone.
There are many temporary causes of symptoms that masquerade as dementia – or other cognitive impairments, like confusion, paranoia or even psychosis. The most common in my experience is a urinary tract infection (UTI). In this case a simple course of antibiotics clears it up in days returning the person to normal mental function. Other reversible causes for “dementia”-like symptoms can be caused by high fever, dehydration, vitamin deficiency or poor nutrition, a bad reaction to medications, a thyroid problem or a minor head injury.
Mom and I had a preliminary discussion about moving elsewhere a few weeks ago. She was sad and afraid. Never thought she would need to be “cared for” because she has always been the caregiver. I’ve tried really hard not to hide the ball from her. I explained all the factors we were taking into consideration – financial, practical and most important of all – HER preferences. My brothers and I are doing the “legwork” – setting forth all the options we can think of together with the financial data as precisely as we can get it. I call it the “spaghetti exercise” — throw everything on the wall and see what sticks. Where? With one of us (requiring modifications to home to accommodate her mobility issues)? A facility of some kind? An apartment near one of us? Some options will fall off the wall and out of consideration all by themselves as impossible, unaffordable or undesireable. Others will bear closer scrutiny.
Yesterday, while visiting Mom in the hospital, we got on the phone with one of my brothers and I told him I felt we might have to speed the process up a little and get mom into some sort of Assisted Living or other arrangement closer to one of us more quickly. He agreed. So did Mom. I said (we were on speaker phone) that I didn’t think Mom was happy about it, but that she would cooperate and contribute. When we hung up, Mom commented, “Doris, I’m not unhappy. I think I’m ready.”
Are you? I can tell you this is a very, very difficult process. For everyone involved. However I caution you not to wait until Mom or Dad has a serious fall, a stroke, heart attack or other debilitating medical issue. At that point, your choices, practical, emotional and financial will be much more limited.
Observe Mom & Dad closely over the holidays. And don’t make a pie. Take them OUT for coffee & pie!
Happy Holidays all. A healthy and prosperous New Year!