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What can you do when your help is not wanted?

lifesaverIn the course of a few days, I talked with two different adult children who are trying to help loved ones but being told their help is not needed. This stage is the worst in my opinion for many reasons. The first is that it is the time when changes can be made to extend the life the individual or couple wants. Cognitive issues don’t go away by ignoring them, and early action offers the most opportunities to make choices and find good solutions for continuing to enjoy life. Unfortunately, you may have to wait until there is a critical failure before you can step into help.

In both cases, the husband is caring for a wife that clearly has some form of dementia. To the husband, I believe they are trying to maintain the life they have been leading and not recognizing how much the quality of life for the spouse, or for them, has changed. First, see if you can step into the spouse’s shoes. What is it that they are afraid will change if they try to get the care their spouse will need? This is the time when they fight hardest to maintain their lives.

Please recognize that the individual with cognitive issues often don’t recognize they have a problem. It’s a medical condition called Anosognosia and what you might not be privy too is how much the husband tried to point out these issues only to create a fight with his wife. He might feel like he is keeping the peace and protecting his spouse.

If there are other adult children, can you get all them together to present a united front? Do the have good friends who might join you or neighbors they trust that have reached out with concerns? My siblings and I did this twice. Our parent’s politely declined our suggestions both times. My siblings all followed up these visits (they flew in from different parts of the country) with letters. Both my parents had cognitive issues and no short term memory, so they truly believed we were making up the issues we cited.

If you have siblings that won’t help, or encouraging your parent to ignore the feedback from the other kids, you most likely have to wait for the critical failure.

I realized that my frequent visits to stop-gap the issues my parents were having (turning back on the water, showing up to get dad off the floor on a regular basis, meeting the police when they broke into their home and called them to report a burglary) was enabling them to continue leading their lives. The decision to not show up one night and my suggestion that my mom call “911” resulted in my dad ending up in the hospital and helped us implement some better solutions for their health and safety for the time being.

If you feel they are neglecting their loved one, you might consider calling in Adult Protective Services. I would at least call them to see if they have some suggestions. Typically they are unable to help unless there is imminent danger.

The reality is most likely that the spouse feels terribly alone and has no one to talk to. They want to protect their privacy and often won’t bring this to the attention of their physicians. Most doctor’s don’t have the time to even help someone navigate a what it means to have mild cognitive impairment or dementia.

So what can you do?

  1. Listen, suggest, offer. But back off if you get no.
  2. Wait for the failure, and be ready to help when you are invited in.

I wish I had more suggestions, but sometimes you can make someone else do what you believe is right, they have to be ready. Witnessed. 

 

For some other articles related to this topic:

Sometimes you just have to be sneaky: After meeting with my parents, this is what the retirement community psychologist suggested when my parents refused to accept the help they obviously needed.

Someone broke into your house? What happened the night my parent’s call the police to report a break-in.

 

 

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We don’t fully grow up ’til we lose a parent

SanDeigoERH

With my parents and siblings in San Diego.

I am permanently and notably different after the loss of both my parents. Over the course of five years, I learned how to cry, how to bend, how to allow the emotions in front of me to matter. As an Army brat that moved around, I had a built and worn a shell that made me unapologetically gruff to some, while others just felt I was incredibly aloof and detached.

For those that made it into my friend zone, they saw that I had those thoughts and emotions, but it was not often that they were on display. For the inner-sanctum, they have found pure entertainment in my gruff reactions to the smallest of matters.

There is no turning back now. Some days I am frustrated by my new-found humanity. I can’t believe why something as simple as a comment about  “nana or pop-pop” will bring tears to my eyes. I miss them, I wish things would have gone better for us all, and I want to make sure I do a better job for the sake of me, my husband, and my kids.

I knew my parents as an adult, so I had many opportunities to talk about many things that mattered. But I do recognize how their loss permanently etched some details on me that will remain.

The headline of the the post came from a story I saved in a blog draft from 2015. This son didn’t really get to know his mom until the final days of her life.  But he did a wonderful job of honoring her memory. 

I needed to change to be a better care partner to my parents. I’m still adapting to figure out to use all those lessons to be a better person. Humbled.

 

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Males Most Susceptible to Scams

According to the BBB Scam Tracker Annual Risk Report, Males are the most susceptible to 7 of the top 10 scams they studied. While I think the reports on scams are hard to pin down because from what I’ve witnessed, many people that have been exploited didn’t even recognize it. This report summarized over 32,000 scam reports reported to the BBB with the top scam being home improvement. It might just be that more males report being taken advantage of than females.

BBBTop10Scams

The reality is that there are too many people that make a living by cheating others out of their money. The best way to combat these concerns is to start thinking about how you can protect yourself from becoming a victim. One of the ways I suggest to clients when they find out they were taken advantage of is to reflect back on the offer. Was it too good to be true?  Should an offer for something free require your credit card? Did your gut hurt because you felt pressured into making a decision?

I know it seems silly to suggest using your stomach as a guide, but most often our basic human instincts still exist to protect from all kinds of trouble. Suggested. 

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Loneliness and It’s Impact on our “Healthspan”

desert-lonlinessOn a personal level, the topic of loneliness has become a growing issue in my community, and not just an issue for older adults. As we move through our own life circumstances, friends come in and out of our lives. The good friendships formed when you volunteered at your kid’s elementary school grow weak when the kids end up in different middle and high schools. I have a pack of crazy tennis mates and when one was facing breast cancer and another had a knee injury, our connections grew thinner. We still work to find ways to connect off the tennis courts, but it’s harder with all the other family and work priorities. Those transitions can present real pockets of loneliness in every adult life.

I have shared my concern over the aging in place movement in prior posts. When you are no longer driving and are now living alone in your home, the impact of loneliness on your health is a very real issue.

As reported by the Village to Village network in their August newsletter Loneliness has recently been called a medical epidemic and labeled an “adverse signal” alongside hunger, thirst and pain. A growing mountain of research is linking loneliness to physical illness as well as to functional and cognitive decline. As a predictor of early death, loneliness eclipses obesity or heavy smoking and studies confirm that loneliness shortens the lifespan by 7.5 years and, even more importantly, shortens the “healthspan” even more. “Denying you feel lonely,” warns one top researcher “makes no more sense than denying you feel hunger.” Loneliness is everybody’s business.

For someone with cognitive issues, not only does the loss of short term memory make it hard to make new friends, it makes it hard to participate in a host of social activities. I am seeing this in the clients I serve. What I learned after caring for my parents is that delaying a change can actually be detrimental.

When we moved my parents from Independent to Assisted Living (at the insistence of their community which we were grateful), my parent’s were the happiest they had been in a year. Trying to managing their larger apartment and maintain their lives was too much for them. They were now closer to a host of activities and out in the community more. I was physically ill for 3 days up to the move and pleasantly surprised by my parents joy with their new, smaller apartment.

The process of the move for someone with cognitive issues typically brings a step-down in capabilities. I watched it my mom when we moved her from Assisted Living into Memory Care. However, she bounced back and had periods of joy in her new community doing a host of new activities they offered.

As the care partner you are faced with so many choices. I hope you will consider how much isolation and loneliness can have on your loved ones and really consider when it might be time to make a change. There are really MANY great options in my community now. What about yours? Wondered.

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The Subtle Elder Abuse You Might Not Notice

fraudYour loved one wants to stay in their home and you are concerned. Over and over, I’m finding that even my clients who have involved adult children are victims of some subtle forms of elder abuse that is stealing away hundreds to thousands of dollars of their parent’s money.

In the past month, I’ve had a client that got taken by a face cream offer. She does not have any cognitive issues and is now caring for a loved one with Parkinson’s. She never managed the money, so she asked me to step in to help her understand and manage the cash flow and help with budgeting since the expenses are starting to escalate with her husband’s care. When we started to review the credit card, I asked her what Lye Ludermacell was. She said it was a “free” face cream trial where she paid for shipping. Well, there was more than $200 of other charges for products on her credit card. She was very angry, as have been several thousands of clients taken in by the same scam. Michelle Singletary (The Washington Post) wrote about it earlier this month. We called to cancel and recouped 75% of the charges on the products she had received. We discussed how ANY offer, no matter how credible looking that says FREE and then asks for a credit card is trouble.  Had we not looked through her credit card billing item by item, she may not have noticed for months–if even at all.  So many older adults just set the bill on auto-pay and don’t scan the monthly bills. That is a very dangerous habit when so many individuals and even organizations are working to get to your money.

A few months ago, I spent more than 45 minutes with Juno trying to cancel the service for dial-up Internet my client was still paying for. She just never thought to question the monthly $9.95 billing for Juno even though she had wifi in her house. We also found a “free shipping” subscription billing her $25 monthly she had no idea how to use or what it was. So Juno took over $1,000 of her money and the shipping subscription had been billing her for two years for more than $600 of her money. I have ten zillions ways I could spend $1,600!

The one issue that is troubling me the most is for a client with mild cognitive impairment who generally is doing fine living at home. Not only is his daughter involved, but I visit him twice a week and we have an Aging Life Care Manager Another who is helping manage his medical visits and medications. When I noticed he had a physical therapy (PT) appointment on his schedule and neither his daughter or the Aging Life Care Manager knew about it, I made a point to stop by during his next PT session at home. It turns out that six months ago, his doctor recommend PT and they had an agency come in for a few weeks. It was determined after a few visits that he didn’t need it any longer.

So here’s the dirty underbelly of health care — somehow the first company passed the order to an affiliate who called my client to say the doctor ordered PT and started scheduling both PT and Occupational Therapy appointments (medication management). When I shared what I found, his daughter quickly called to shut down the service and cancel all future appointments, but the first few visits were billed to his Medicare account. Technically, the health care agency was implementing the doctors order, but it was already determined he didn’t need the services by the first therapist.

It’s the small issues that can add up making someone with cognitive issues living alone incredibly tricky. You want them to maintain the independence and lead the life they want, but you are faced with a number of risks from safety and fraud that mean another choice might be better. Conflicted. 

 

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Letting us in.

Driving-Miss-Daisy.jpgOne of my favorite guilty pleasures is watching TV in bed on a Saturday morning. I usually find a well-regarded movie, prop myself up with some pillows, and just watch. This past weekend I landed on Driving Miss Daisy.

Oof-dah. All was well until the last 15 minutes! So much about Miss Daisy reminded me of my mom. She was specific about how she wanted things and fiercely independent. It made it really hard to help in the beginning when we recognized mom was having trouble with some day-to-day tasks. I learned to be softer in my approach and available to help when she might accept it.

The part that took me down was near the end. Miss Daisy, now living in a care community, readily accepts forkfuls of pumpkin pie from Hoke (the man hired to drive her after she backs it out into the neighbors yard and totals her car) who comes to visit her. Hoke was always there for Miss Daisy. She wasn’t going to bend, so Hoke always did. Finally, Miss Daisy recognizes how loyal and helpful Hoke is well before she starts to show signs of dementia. The scene makes my chest tight and leaves me sobbing for nearly twenty minutes. I distinctly remember a few times when my mom let me feed her and looked into my eyes with appreciation. My heart swelled each and every time.

I learned that once my mom was having cognitive issues, I couldn’t expect her to change. I had to change. We (my siblings and I) made life choices for her when she no longer could and she adapted, but she still had a feisty side. It wasn’t until the last year of her life when I saw her soften. I remember recognizing the sea change in our relationship when she gratefully accepted help, and thanked me for it.

Should I end up with a similar fate, I’m not sure I will behave any differently. Will you? Wondered. 

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The Long Gray Line Visited My Dad in Hospice

kayanddad

One of my favorite pictures with my Dad at Fort Belvoir prepping for a parade.

Today The Washington Post included a story from a son who watched as his mom started to talk to her dead relatives when she was in hospice care. It freaked him out, as one would expect. To me, it brought a smile as I recalled the final night of my dad’s life.

Let me explain …

My dad was moved into a hospice facility when we couldn’t arrange the right care for him in his retirement community. He was living with my mom who had vascular dementia and didn’t want any help in the apartment, but dad needed constant support to keep him comfortable.

I end up in the hospice facility with dad in what turned out to be the final night of his life. He was medicated for comfort, but would have periods of wakefulness. During this time, I watched as my dad was looking right to left and saluting. I had seen him do this many times before–he was saluting soldiers marching past his bed that I could not see.

What I recognize now, but apparently instinctively felt, was that my dad was very close to death. My siblings will recall my angry phone call which was very much out of character asking them why they weren’t bedside.  To be fair, my siblings had been with dad all day and helped move him into the hospice facility. None of us expected his stay to be so short.

I look back on that experience and agree with the author of the Post article. I believe my dad got comfort from seeing as West Point describes as The Long Gray Line of soldiers marching by as he was preparing to join them. Remembered. 

 

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