You are still their child, even at 60!

babytrapI have the chance to meet and talk to a lot of adult children who are caring for loved ones with dementia. At a recent “Caregiver Academy” talk, I shared some of the major roadblocks I faced when trying to help my parents. I usually get a few open guffaws from other adult children facing the same issues.

I learned that reason doesn’t work when our parents still see us as their children. I imagine it’s kinda like how I still think I’m younger than my image in the mirror conveys (ouch, still hurts to admit that.)

When my dad was initially diagnosed by the psychiatrist in their Life Care Community, the doctor called and told me I needed to be with my parents for the diagnosis. He recognized that my parents weren’t accepting help and that they were both in a place where they were unable to make good decisions and at risk for fraud. After we had made plans to go to the appointment together, my dad calls me back and says “You don’t need to come. I’ve got a wife, damn it!”  I knew that my mom made my dad make that call. It didn’t matter. I still needed to find a way to make sure he went to the appointment and to be there.

When my parents finally started to ask for help, I jumped at EVERY request. Then I realized that I might be enabling them more than I was helping.

It’s easy to understand now that I’m on the other side and working with other families who are facing the same issues. However, I will always advocate to find ways to allow a family to maintain their parent/child role, while keeping mom/dad safe. I wish I could have been more of a daughter and realize how many hours I spent at the nurses station, coordinating help, and following up on invoices and managing the finances.

One adult caregiver who attended the talk was at the breaking point and came up to chat. I suggested she have a Life Care Manager meet with her mom. She wrote me a week later to tell me it has made a huge difference. While mom was resistant to help from the family, and dismissed the family doctor recommendation, she agreed to meet with a local life care manager who helped her (mom) take control of her medication and invited her back.

What is important is to recognize that it’s important to feel control over your own life. Even when things are failing, you still want to have a say. In many cases, the person failing won’t recognize it.

While I hope I won’t be as stubborn as I felt my parents were being, I’m pretty sure I will most likely be. I continue to openly discuss it with my kids hoping that should/when the time comes, they know how to use what I have learned to make it easier on them.

Every family has a different set of circumstances. Some kids show up to help, some withdraw, and some seem to only create more problems than help. I am very lucky to have four siblings (and supportive and helpful spouses) that showed up when it was needed most — for me and my parents. Blessed. 

Have you heard of The CARE Act (Caregiver Advise, Record, Enable Act)?

CAREAARPI attended a caregiving support group at my Mom’s retirement community. One of the members was sharing the horror story about the release of her husband from the hospital. I immediately relived the story of my Dad’s hip surgery and the doctor’s discharge plans.

After breaking his hip on the racquetball court, the doctors were going to release my Dad into the care of my Mom. My Dad had surgery and was in the hospital for 4 days. He was in terrible pain and was unable to get himself to the bathroom unattended. At this time, my Dad was around 200 pounds and my Mom was around 105 pounds. My Dad insisted they release him so he could get back to their 3-level town home. As I sat with my Mom listening to the discharge instructions, I stopped the doctor and told him there was no way my Mom was going to be able to care for Dad. Thankfully, my parents were in a Continuing Care Retirement Community, and they had the ability for my Dad to be cared for in skilled nursing while he rehabilitated.

I thought it was derelict for the doctor to release my Dad into the care of my Mom given his needs. At the time, my Mom was initially unwilling to admit she couldn’t care for my Dad. However, at a glance, it seemed very obvious that my Mom would be unable to help my Dad get out of bed and to the bathroom and ridiculous that he would be able to climb two sets of stairs so soon after his surgery.

While my Dad was angry and hated being in skilled nursing, he needed to be able to get himself to the restroom at minimum. Then he was able to finish his recuperation in their one-level apartment.

I’m not sure the new act if implemented will help, but I’m glad to see some light brought to this topic many of us have already faced. Finally, Some Help For Family Caregivers After Hospital Discharges Interested. 

 

Additional Related Stories:

Support Seniors and their Family Caregivers AARP

Thank you Gov. Fallin, Legislature for Support Marjorie Lyons

 

Helping someone with Dementia find Meaning and Purpose

helpinghandMy daughter and I visited my Mom yesterday and as we were leaving my 11-year old turned to me and said “She’s a lot worse.” I have noticed that instead of one or two odd-ball comments, she now has whole sentences that don’t make sense.

She is also doing things that don’t seem very nice, but I know under her actions there is good intent. My Mom is a life bridge master and created and directed games around Northern Virginia. Several of them were in the Retirement Community where she now lives. I was told that she has been very disruptive at the games and have visited and seen the resistance to find her a partner lately. About a year ago, she tried to willingly turn over the games to a woman who volunteered. My Mom was having a hard time getting the bridge boards together. I know the woman had a very hard time because my Mom would forget she turned over the game and try to take it back over. Apparently, she still forgets which causes trouble.

A few weeks ago, the woman who was running the games got ill and has been in the nursing unit. My Mom went to go take her “boards” back from the community room. When I asked her why, she couldn’t tell me.  She is having a hard time putting her ideas together and communicating her intent — the first week she told me the story, it just sounded like she felt like this was her opportunity to steal back the equipment she turned over to the new volunteer director. Yesterday, she finally told me she was getting them ready so they would have boards to use so they could still have their games.

What I do see when I visit my Mom is how many things she can still do. My daughter hurt her foot and is now using crutches. On our trip, I would stop by the front door to let out my daughter and my Mom. My Mom would hop out of the car and get the door open to help my daughter. She was attentive and tried to assist with small tasks during our entire visit.

That is the missing component now for my Mom. She has been a tinkerer her entire life and having small tasks or someone to help would do her a heap of good. The Assisted Living community can keep her safe, but they just aren’t staffed or designed to keep her mind engaged doing activities she is interested in joining. They do offer bingo and movies and Zumba — but those aren’t things my Mom is interested in. I bet she would be interested if they offered activities that would help others. My Mom was a caregiver for my Dad, but now that he is gone, I know with the right guidance, she could still help others. Wondered. 

Please let me know if you have suggestions or are familiar with programs or facilities that offer more purposeful activities. 

What to do when your conversation with your parent turns unreasonable

When angry with someone, it helps to sit down and think about the problem.

A friend told me the other day she was trapped in a debate with her parents who were going to fire their beloved cleaning lady. Her parents were convinced they were going to have to pay her social security. She did not work enough to come close to the hours needed, but her parents would not be swayed on this topic. She was at a loss on how to move through this conversation.

As I have shared many of the changes in my parents, many of those around me have come to realize they might be dealing with a parent who has some form of dementia. At 65, the Alzheimer’s Association reports one in eight suffer from some form of dementia and by 85, that number is one in two! The changes, even subtle ones, will impact your relationship with your parent.

I shared with my friend that when a conversation seems unreasonable or gets contentious; I abort the conversation as quickly and as pleasantly as I can. My go-to moves include excusing myself to:

  1. Use the restroom
  2. Get something to drink
  3. Make a phone call

If I return and they want to revisit the topic, I will move to the more elaborate options:

  1. Go to the grocery store
  2. Visit the art gallery in the retirement community
  3. Ask my dad if he got the mail today

Think back on your conversations and you might recall that your parent was very emotional. I found that my parents feed off the emotion I’m displaying. They were not listening to a word I said and the conversation would cycle through the same topics. I would grow more agitated with each cycle.

Now, I end the conversation and at a later time, consider if there is a way around the issue. In most cases, I won’t even comment until I’m specifically asked a question (this was VERY difficult for me).

In the instance of my friend, I suggested she tell her parents that she could pay the cleaning lady from her business account where due to her hours, she won’t have to pay the social security and employment taxes. While she has no intention of putting the expense through the business and would pay it from her personal account – it is a reasonable option that her parents might easily accept.

I had to learn that the civilized debate my parents encouraged at the dinner table was no longer part of our family dynamic. I needed to change to help my parents navigate their evolving landscape. Explored.

Out of the mouth of babes: “That was a weird call”

My brothers left to get back to their lives. The past week was full of activity and we made progress on some major items we needed to address.

As I was in the car with my son, my mom calls and I answer. I have Bluetooth, so he can hear the full conversation.

Mom: “Hi Kay, did you just call?”

Kay: “No, I didn’t. How are you?”

Mom: “Surviving. Can you help us?”

We chat a bit and come up with the game plan for my next visit. My mom tells me she didn’t want any help today, but they did want to go to brunch together tomorrow. I suggest I pick them up from their town house. My mom explained they have a lot of stuff they want to move to the retirement community so they came in to start working on that. They continue to search for purpose and meaning.  They need help, but they are not yet ready to accept it from anyone but their children.

THAT IS HUGE PROGRESS! They will let us help.

Unfortunately, I am unable to spend time with them every day to help them. However, usually when I do visit now, they accept the help and the visits have been much easier. This required that we both change.

My brothers reported that their visit was conflict free. They were able to use the tips I shared on working with the parents.  They noticed a big difference on this visit.

When I hang up, my son turns to me and says: “That was a weird call, good, but unusual – what happened?” I went with the short answer. We have all adapted to find a way to work together. Changed.

When you adapt to your parent’s dementia, so do they.

I am a glass half full kinda  gal, but my last two parental visits went a little too well.

Many of you shared that after a few weeks or months, the changes your parent fought starts to settle in. After one of my parent’s doctors revoked their licenses using the DMV form that is offered and they continue to drive unlicensed and uninsured, we (the children) agreed to take action. My two brothers arrived and my parents handed over the keys. However, my parent’s memory is porous so after about two weeks, they were angry and the story became how my one brother forcibly took away their cars.

Once we got into month two, I just stopped the rebuttal of confabulated facts. It was suggested to me that we make the cars disappear so one of my brothers and his wife came to town and put both cars in storage.  The repeated complaints that one of my brothers took their car keys has subsided – it is still a tale that rumbles around in my mom’s memory.  When it comes up now, I just don’t respond on the topic.

So here we are and my last two visits with my parents were pleasant. Did I learn how to better manage, did they change or is some of both of those elements creating our new state? I am totally okay with this new place. Settled.


 

Where are my Car Keys?


After my sister gets punked by my parents she comes to stay at my house. My parents said they wanted to give up the car keys and driving, but when my sister starts to drive them everywhere they end up taking the keys and leaving her without a car or a ride.

My sister was trying to help keep them compliant with the doctor’s orders by driving them where they said they “needed” to go, and they quickly repay her by creating an emergency and leaving her in their apartment at the retirement community without any of her belongings.

The next morning, after I picked my sister up to come stay at my house overnight, my mom calls looking for their car keys. Within the hour, my dad calls wondering where his car (and car keys) are – does my sister have them? Now my parent’s can’t find the car keys or the car. Do we know where they are?

My sister has no idea; it should be at their townhouse. He says he’s going to take a cab to the retirement home to pick up his car. But by the next day, when his car is at the townhouse and mom’s car is still “missing,” we later find he had driven mom’s car to the retirement community and left it there when he picked his up – probably using a second set of keys. We later learned that the set of keys that dad so solemnly handed over to my sister in front of the doctor had been mom’s set of keys, not his own.

I am trying to explain this clearly, but two homes, two cars…it’s hard to keep track of them much less for my parents to manage two places and two cars.

My siblings and I will often discuss how tiring this must be. They spend hours each day looking for my mom’s calendar, their checkbook, car keys and their cars. We would love to help them find more meaningful ways to spend their time. They don’t seem interested. Noted.

How many doctors does it take to help my parents?

More than three.  Ha-ha, anyone?

My brother and I spent the morning and early afternoon getting my parents to a follow-up doctor appointment based on the recommendations from the psychologist. There are no cues in their blood work to flag any specific issue we could address. Instead, we spent the appointment with the doctor trying to educate my parents that:

  1. Several doctors have raised a red flag that something is wrong.
  2. They are lucky to have children involved and interested in helping them.
  3. They need to simplify their lives before an accident causes them to have a sudden and negative life change.

My mom does not believe anything said to her and is angry with my brother and me because we didn’t have this discussion with her first. We explain we’ve had it so many times, we’ve lost count.

“Prove it,” she says. I tell her I stopped writing it down because it doesn’t make a difference. She won’t believe it and even if she did, she’d forget it.

The doctor suggests that for every instance, we write up a note and have my parents sign it. Brilliant suggestion.

We get to the end of the meeting and I ask the doctor to write up our meeting with her recommendations. She does and she hands it to my dad to sign and date. He willingly does. She turns to my mom who refuses to sign it so she writes that my mom refused to sign it and has my brother sign and date it confirming my mother’s attendance and her refusal to sign the paper.

We keep trying logic with someone who has dementia. My dad doesn’t want to betray the trust and partnership he has with my mom but I can tell he’s getting weary. We tried, but it’s just a different day with the same result.

Apparently, three doctors are not enough to help my parents accept the changes they need to make. Tired.

Guilt and Resignation

This is from my brother who was in town visiting with my parents when I was away.

 

After spending time with my (memory and behaviorally challenged) parents this past week, I came home with the feeling both they are and I am being cheated out of the things that give us value in life. When I get emotionally wrapped up with my mom’s antics, I find myself continually responding as her son, helper and then (sometimes) disciplinarian. I feel like I need to get her to understand that she is not making sense, and/or she can’t remember that she can’t remember anymore. Part of me needs to win the crazy argument logic, and the other part of me realizes this is not my mother, and there is no win if she is beaten down. Sometimes I see the fear in her face as she cannot process or comprehend what is happening. As Neil Young would sing, this leaves me feeling helpless, helpless, helpless. 

 

There are still some things I just can’t let go of, like false statements, risky behaviors and meanness. What I cannot get my mind around (while with my parents) is that none of what we try to do for them really matters anymore, and part of the problem is my behavior. Sure we need to look out for them, but they do not recognize or care about our (siblings) efforts almost all of the time now. After spending exhausting days with them, and feeling like I am too losing my mind, I return home and feel guilt and resignation that we have already gone over the edge and are not coming back. Weakened.