Starting the Dialogue with your Aging Parents: What’s Causing the Changes?
Every day in the news there’s a new article about the rising cost of care related to Alzheimers and Dementia services, the signs and symptoms, the huge number of people expected to be diagnosed with either condition, and ways to cope as you watch your parents decline into a world you can’t begin to comprehend. As adult children of aging parents you may be scared, vigilant observers wanting to catch the first signs of change, or totally ignoring the possibility that this could impact your family.
Regardless of where you stand and how you feel let’s stop and take stock of some different scenarios and possible causes.
- You live over 600 miles away from your mom. She lives alone in an apartment building in a safe area and has many friends and activities she’s engaged in socially. Most of the time she appears much younger than her 82 years, but this week during your regular Monday night call she couldn’t remember what day it was and why you were calling.
- Dad lives across town from you in the house you grew up in and that he shared with mom for 63 years before she passed away. You stop by two or three evenings a week to check on him and spend some time reminiscing about years gone by. He has a caregiver who comes in to assist him with bathing, housekeeping, and to fix his lunch and supper. When you arrive you see his evening meal in the refrigerator ready to be heated in the microwave and wonder why he hasn’t eaten yet. It’s 8:00 PM and he has eaten dinner at 6 PM all of his life. When you ask him why he hasn’t had supper yet he tells you that he just had breakfast, why would he want supper. He then laughs and quips back at you, “Why would I eat supper so early in the morning?”
- Mom and dad moved out of the family home last summer in a small Maine harbor town and into a smaller home in Arizona to enjoy the warm sunshine and dry weather. This year you, your husband, and your three children will visit in late spring to see how things are going and enjoy some extended family time. You have lots of plans to explore the desert gardens, retail outlets, and maybe take a cooking class with your mom at one of the high-end restaurants. Your husband plans to “talk shop” with your dad about his former career as an architect in order to get some fresh ideas about the addition you want to put on the house this fall for a home office. You’ve driven 2200 miles to see them and plan to sleep in your 5th wheel since there isn’t room in the small home your parents live in to accommodate everyone comfortably. On arrival your parents are surprised to see you and seem reluctant to let you into the house. You’re astonished to see that in less than a year the small home has become cluttered with piles of newspapers, magazines, boxes left unpacked from the move, and a total sense of neglect and chaos. There’s little food in the refrigerator, the sink is filled with dirty dishes and there are overflowing trash bags scattered around the kitchen. This is not what you expected from your normally fastidious and organized parents.
In all three instances the adult children of these aging parents immediately assume the worst and think they are facing a diagnosis for their parent(s) of Alzheimers or age-related dementia. Their world starts to crumble and they are panicked.
Now, let’s step back a minute and look at what might be the cause of any one of these three situations:
- Confusion caused by multiple medications interacting in negative ways
- Covering for a spouse
- Misuse of prescribed medications leading to negative side effects and confusion
- An actual diagnosis of Alzheimers or age-related dementia which hasn’t been shared with the rest of the family.
- In scenario #1 above this actually happened to my friend Cassie. She got on a plane the next day and went to visit her mom. As an only child she felt guilty about not being able to care for mom herself so she dropped everything to go check out the situation. On arrival at her mom’s house she saw 12 pill bottles on the kitchen table. At first this didn’t raise any red flags for her, but the next morning as she watched her mother take her medications without even looking at the labels to see when she was supposed to take them she became concerned. She tried to remain calm as she asked her mom how she knew which ones to take at which time. When her mother answered that it was all too confusing so she just took a pill from each bottle every morning and every night before bed a light bulb went off in Cassie’s head. She called the pharmacy and asked the pharmacist what could happen with such behavior. The pharmacist indicated that with the three new prescriptions he’d filled just a few days earlier it would lead to increased confusion, possibly some heart palpitations, and an increased desire to sleep. If continued for long periods it could lead to serious complications. Luckily, Cassie’s mom had only been doing this for 3 days. Cassie then got on the phone to a local home health agency and made arrangements for the company to lease a medication dispenser to her mom and to provide a nurse to come to the house every two weeks to fill the dispenser. The pill dispenser had a timer and would dispense the appropriate medications at the appointed time so her mom didn’t even have to think about it. Cassie then had her mother sign an authorization allowing the doctor to contact the home health agency whenever a new prescription was written and added to the regimen so the nurse could be sent out to add this to the dispenser. Cassie stayed with her mom for a total of 5 days to be sure everything was running smoothly with the new dispenser and also to spend some time catching up with her mom and visiting. Since her mom wasn’t homebound the home health services weren’t covered by Medicare but Cassie’s mom had enough money to pay for the services privately. Within 24 hours of starting with the pill dispenser Cassie’s mom was back to her normal self and was no longer confused. She and Cassie enjoyed the remaining days by shopping, lunching, and planning a beach vacation together for later that year.
- Scenario #2 above is one experienced by my friend, Hadley. Her dad had always been so independent and rigorous about keeping to his schedule. Hadley was very concerned about his confusion and immediately called the caregiver who was with her father every day. She asked if the caregiver had noted any changes in her dad over the past few days. The caregiver said that she was concerned because it appeared her client had not been drinking enough water. The weather had changed recently and temperatures had quickly gone up into the 90s, but Hadley’s dad refused to drink water. In addition, he had been outside for long periods over the past two days and came in flushed and perspiring heavily. When the caregiver suggested that he should work in his garden early in the morning when it was cool he had told her everything was fine and that he had always worked hard during the middle of the day. Also, he had complained of a severe headache the day before and taken a nap in the afternoon which was not part of his usual routine. Hadley went into the bathroom to wash her hands and noted that her usually fastidious father hadn’t flushed the toilet. As she reached over to push the handle she noted that the urine in the bowl was very dark, almost brown and that it had a strong odor. Hadley called and made an appointment for her dad to be seen at the local clinic the next day. The medical provider checked Hadley’s dad over very carefully. Immediately he noted that the skin on the forearms was tented for >3 seconds. He ran some blood tests and took a urine sample as well. Later that afternoon when he called Hadley with the results he indicated that her dad had become severely dehydrated and needed to have some fluids infused intravenously to restore him to a normal hydration status. Hadley sat with her dad in the outpatient clinic as he received his fluids. The medical provider met with them again when the infusion was completed and encouraged Hadley’s dad to drink plenty of fluids (especially in the warmer weather), avoid working during the heat of the day (between 10AM and 4 PM), and to call immediately if he felt ill. Hadley passed this information on to the caregiver who was asked to monitor carefully and call Hadley immediately if she noticed any changes at all. Once re-hydrated Hadley’s dad returned to his normal routine and thanked both Hadley and the caregiver for looking out for him.
- Monica and Ted were the ones who drove to Arizona to spend vacation time with her family. After Monica’s initial shock she took her mom out for lunch and gently probed to see if she could get a handle on the huge change that had taken place since the move. During lunch Monica noted that her mother couldn’t concentrate on anything, she was incapable of making a decision of what to order from the menu, she would lose track of what she was talking about mid-sentence, and she would often just sit staring through Monica as if she wasn’t there. That was the hardest lunch of Monica’s life. Meanwhile Ted was back at the house having a chat with Monica’s dad. The kids were outside playing oblivious to all the chaos swirling through their parent’s heads. During Ted’s conversation Monica’s dad confided that he just didn’t know what to do. He stated that his wife had not been able to cook or clean for the past three months. She had always run the household so he assumed she was still doing so until he discovered that she hadn’t paid bills in over four months. He had been too embarrassed to say anything to Monica about the situation and had forgotten completely that they were coming for vacation. That evening, once the kids were asleep, Monica and Ted shared their respective experiences from earlier in the day. It was decided that Monica would make an appointment with her mother’s medical provider and they would explore options from there. Meanwhile they both set about cleaning up the house, organizing the bills, and paying those that were of highest priority. Multiple discussions took place about how to handle the future. In addition, Monica prepared large batches of stew, spaghetti sauce, chili, and other things she put into individual serving dishes and then put in the freezer. She posted written instructions on the fridge for her dad so he could pull them out and heat appropriately for meals. Ted and the kids stayed for the originally planned week, but Monica stayed on for an additional 3 weeks in order to be present during the medical appointment for her mom and then the appointment with a specialist a week later. The diagnosis for mom was middle stage Alzheimers at level 4/7. Mom was started on medication which seemed to help, but Monica knew that eventually things would deteriorate and further decisions for care would need to be made. After talking it over with her father it was decided that initially they would hire a cleaning service to come in twice a week to clean and prepare meals that could be frozen and thawed for use as needed. Monica made plans to arrange to visit at least every three months and spend 4-5 days with her parents to monitor the situation. She also set up a regular time to call each week to check in and made her father promise not to keep any changes in her mom’s behavior from her. The final thing she did before heading back home to Maine was to get Health Care Proxies signed by her parents allowing her to obtain information about their health status and make decisions regarding their care if they became unable to make their own decisions. Currently, mom is holding her own on her medication regimen. She has regularly scheduled visits with the neurologist to track the progress of the disease. Monica spends time each week researching the best facilities for end-stage Alzheimers care. The need isn’t there presently, but Monica wants to be prepared to move quickly if the time comes where alternative care is needed for her mom. Dad remains devoted to mom and for now they are aging in place with assistance.
This post is much longer than my usual posts. I hope you see how important it is to be aware of what is happening with your aging parents. In sharing the experiences of friends of mine I hope you also see that jumping to the conclusion that because there is a change in condition it doesn’t necessarily mean an Alzheimers or dementia diagnosis. Only one out of the four people discussed above received a diagnosis of Alzheimers. The other three were things that were easily remedied after proper assessment by a medical professional.
Feel free to ask questions or share your own experiences in the comments section. I appreciate all who read this blog. Thank you for sharing with me.