Tag: parents with dementia

Pausing to Understand Your Loved One

Years ago when I was the adult child watching my parent’s cognitive abilities dim, I ended up reading some things Kate Swaffer posted. She was diagnosed with dementia before her 50th birthday and has been a thoughtful, passionate educator for the years I have been watching her in action. She recently posted Today, I hate Dementia.

In caring for my parents, I read her words to help me better understand what my parent’s might be experiencing. What I thought was a mean rebuke of something I was doing to be helpful, was a personal affront I had initiated without realizing my impact. Dementia is cruel. It steals things from all of us.

I hope you will read her post and check out her book and other posts that may offer you a peak into the lives of those we are living with that might not be able to tell us what and how they feel. Appreciated.

Navigating the Choice to Move a Parent in with You

I believe had I known how my parent’s care journey would end, I would have made some different choices. We all know hindsight is 20/20 and it’s easy to second guess decisions made, especially when you are making a decision for a loved one that is unable that choice for themselves.

I am sharing this story that quotes a local professional that I met years ago on a panel discussion. I was immediately drawn to her practical advice and wisdom, and also witnessed her support when we both worked for the same client.

I believe the more you know, the better you can feel about the decisions and choices you may need to make with or for someone else … as well as consider what you might want when you are the one needing a little more help.

When mom or dad wants move in with you: How to decide and what to say if the answer is no

I hope you find the article useful. Recommended.

How can I get Mom to Move?

I have lived this journey. You know Mom/Dad are not safe in their home, but they have no interest in making any changes to their living arrangements.

First, recognize that your loved one may not recognize that they are not managing very well. Their eyesight might not allow them to see the dirty counters; a change in their cognition might make a messy room not seem like a problem; an inability to manage more than one step at a time may make picking up and sorting piles of mail seem less important.

A friend visited her mom and they were working on clearing out the closet. They had pulled everything out and sorted it and the day got too long for them to finish, so they left the project and went to dinner. They were all exhausted and planned on finishing the work in the morning. When my friend returned in the morning, she found her mother put everything back in the closet and was angry that her daughter had “rummaged through her stuff!”

It’s hard. You are worried for their safety and when someone is totally lacking short-term memory and having difficulty processing a simple project, it means they really should not be living on their own. Mom refuses to clean out the clutter and says she is not interested in moving.

My Advice? Tell your Mom you are worried and you want her to move (community, your home, siblings home, fill-in-the-blank). Have the conversation. Understand her feelings, fears, wishes. Don’t dictate, yell, admonish, but just have a conversation. After you have had the conversation, determine if you can come back on another day and implement what you discussed but approach it knowing what your Mom is worried about or afraid of.

When someone doesn’t have short-term memory you will just relive the same conversation. Remember that emotions are what usually get remembered, not the content of the conversation.

After struggling through a move from Independent Living to Assisted Living for my parents, my siblings and I had the conversation with our parents. We were afraid … as are many adult children … that the Assisted Living apartment was too small for them. However, we knew we had to make this happen or their community was going to evict them. One day, we took them out to lunch and brought them back to their new apartment. We spent time helping them decorate and patiently answered questions.

Within days, they had adapted and WERE HAPPIER. They loved being able to watch people come in and depart from the entrance. They had totally forgotten about their prior apartment. At this point, both of my parents were in a moderate stage of their dementia. The move can cause a step down in responses and thinking. They actually enjoyed having a smaller place to manage and enjoyed their new home. We were all surprised.

If there is a cognitive issue, you may never be able to talk them into the change. If they are truly unsafe and a change needs to be made, you might have to make it happen if there is no way to layer in safeguards where they are.

If you don’t make the change, you end up waiting for the crisis and then have fewer options and maybe now another health issue to manage. There is no right answer … just the right answer for you and your loved ones. Believed.

Finding a positive environment for my parents

Yesterday, my brothers and I visited with the retirement community. We need help on navigating the next steps.

The community relations director shared some additional insights on how our parents are doing. She shared that my parents are having a “dignity issue” — as in they are not aging with the grace they expected and can’t recognize it now.

As their children, we want to provide them with the right environment to give them meaning and purpose to their lives, keep them safe and enjoy each day.

Kate Swaffer posted this video and before watching, I suggest you go get tissues.

What is that? This short films shows a son and his father and provides great insight into the nature of the role reversal as our parents progress through dementia.

Personally, I’m struggling to determine how I feel about the choices we have in helping my parents. I felt this video helps one understand how challenging it can be to care for a parent and reminds us how important it is that we provide them with the same patience and love they gave to us growing up.

The community around my parents — friends, neighbors, the retirement community — is telling us they need more help. We need to provide a more complete safety net for them … now.

What is the right environment for them? How can we enhance each day they are on this planet? How can we surround them with a loving, nurturing environment as their dementia progresses?

I’m not as ready as I thought I would be when the day came to make these choices. Puddled.

Adapting to dementia in a loved one … it’s a process

I worked in many other firms prior to launching my business and one of the nuggets I learned during my development was that change is a process. We need time to adapt to the changes happening around us and we need to give ourselves the space to practice, practice, practice.

I’ve been collecting my past blogs in a book format and as I go back and re-read some of my blogs, realize that many lessons I learn take time to stick.

Some of the key themes I struggle with the most seem to be:

I’m not perfect, but I will continue to try to my best to help them, even when they don’t seem to want to help themselves. I understand that they may not know what is wrong or where to start. Accepted.

What are some of the things you struggle to adapt to in helping your loved ones?

If you don’t show up, we will just walk home.

As I’m about to walk into a work event last night, my mom calls. “Kay, our brains are bad and we don’t know how to get food. Can you come pick us up and take us to the club for dinner?”

Dread, sadness and frustration hit me all at once. My parents told me they were going to stay in the retirement community because they recognized they were struggling.  However, they  recently reported to me they again broke back into their town house, and my siblings report they got a letter saying they are living at their town house now.

I’m sad because I know they must be frightened and I miss my parents.

I’m frustrated because I can’t help people who refuse to accept help beyond the emergencies they create.

I’m filled with dread because I know the only way to move forward is to sue my parents for guardianship and conservatorship.

I offer to have food delivered. She then shouts to my father who says he has money for a cab. She then tells me “If you don’t show up, we will just walk home.”  I remind her they have a credit card but that if she needs a ride I will come pick them up. I feel manipulated.

The toughest period in supporting someone with dementia seems to be this transitional period. They want independence, while we crave for them safety. We sometimes get to spend wonderful moments with our loved ones, and other times face a person in our loved ones skin that is foreign to us. Confounded.

Facing your Parents when Dementia Creeps In

My parents are not my parents.  The man and woman who raised me and who would join my family weekly for meals are not the people who carry around my parent’s ID cards now.  It was a really hard thing for me to face as my parents changed. Before I visit my parents now, I remind myself of this fact.

I can no longer have a meaningful conversation with my parents. They don’t remember what is going on in my life, the ages or interests of my children or any of the life events we share with them when we visit.

I still cry when I think about the loss of my parents. Some days, I get a glimpse of the people I remember my parents to be. A witty remark zips off my mother’s tongue or my father will trot like he used to do when plain walking just got boring – I still savor those moments

When I greet my parents they still get hugs. I honor them with the respect they deserve, but I learned to not torture myself but pretending they are my parents and allowing the behavior and language to destroy my memory of the two wonderful people who raised me.

Some days, it’s still a battle, but it’s getting easier to manage. Coping.

If you are in my shoes, how are you dealing with your visits?

 

Other related stories on this topic include:
Three important things to practice when visiting a parent with dementia

Planning activities for people with dementia

Finding activities for parents with memory loss

We are here on the 5th world

My brother and I visited my parents for lunch. Both parents are scheduled to see a Neurologist as the next step toward a diagnosis.

Dementia is a pretty broad term. We would prefer to have a little more clarity around each parent’s dementia. One brother and sister are coming into town to be on this appointment with my parents.

My parents were angry with the brother who is coming into town for taking the cars. He is getting blamed, although we all agreed and supported this decision. I thought it would be nice to just visit and have lunch together so we could move beyond this potential confrontation before he arrives to take them to the doctor.

We arrive for lunch and my parents have already eaten. I called this morning at 9:15 AM and my dad said he was looking forward to lunch with us today.

After lunch we are just hanging out in my parents apartment and talking about how my other brother is visiting a variety of Asian countries now. We mention how the notes we receive sound like they are visiting 3rd world countries. My mom pipes up and says she is here on the 5th world*.

My brother stops and turns to ask my mom “What is a 5th world?” and my mom swiftly replies, “It’s 2 more than the 3rd world.”

She’s still clever even if she doesn’t make much sense some days. Giggled.

 

* Turns out there is a Fifth World prophecy from the Hopi that marks the beginning of a better way of life here on Earth. I hope for my mom’s sake, they were right.

Happy 81st Birthday Mom

Tomorrow is my mom’s 81st birthday. I’ve chewed through a few options and settled on hosting them at our house and feeding her dishes from her own cookbook. That is if they are where they say they would be when I call tomorrow.

I was going to do the traditional brunch we do at the retirement home, but that seems ordinary. Then I considered taking her to a local brunch with a 5 foot chocolate fountain – but I know that new places are difficult for her to absorb.

So, I have prepared her classic brunch favorites and hope they will eat at our home tomorrow.

One year I gave my mom white roses and she commented on them so much, I’ve made this a birthday tradition. This year, as I was cutting the roses, I noticed the name of this variety is “Vendeta”.

According to Dictionary.com, “Vendetta” is any prolonged and bitter feud, rivalry, contention.

On top of all the new issues dementia of a parent brings, you have to mix in the parent-child dynamics, mix in the sibling-sibling conflicts, and you realize that 90 percent of the battle has nothing to do with the dementia, but with loss, anger, resentment, pride. This list goes on and on.

The best present my siblings and I are giving to my mom is our will to stay united. I’m the latest to crumble at the enormity of my parents needs and my brother and sister patiently listen and step in when they know I’m on overload. In speaking with many other children, we are a rarity.

Happy Birthday Mom. Wished.

If you think your neighbors are being neglected or abused by their children …

If you think your neighbors are being neglected or abused by their children … Call Adult Protective Services.

After some events over the past few days, I’m aggravated by the random involvement of my parent’s neighbors. Please HELP us help our parents!

If you hear your neighbors telling you that their children have taken their cars, are forcing them into a retirement community, are stealing their money, don’t try to fix this on your own. Call Adult Protective Services (APS). APS investigates reports of abuse, neglect, and exploitation of adults 60 years of age or older and incapacitated adults age 18 or older.

If what your neighbor is telling you is true, they need an advocate. Instead of trying to fix the one issue, tell them that you will help them by getting someone involved who can provide them with more permanent assistance to address any past or upcoming issues.

You did not help my parents when you helped them re-key their car, or break into their own home.

The Situation You Aren’t Aware Of: Both my parents had their licenses revoked by the DMV, told us about it, and continued to drive. We learned that their insurance company dropped them after getting the revocation notice. My brothers flew into town, discussed the issue with my parents who initially handed over their car keys. They visited with them and helped them adjust for the three days following this action. A second brother stayed on a week to help my parents.

My parents were compliant the first few days and then started to rebel.

What A Neighbor Did: My parents neighbor connected my dad with someone to “rewire” the car. This cost over $800 and then created additional issues with the car’s electrical system.  We could no longer use the original keys and then had to tow the car to a shop to “refix” the car. Add another $500 to the tab.

The Possible Consequences of your Help: My parents could have killed someone else or themselves when they got in the car to drive. Many days, they don’t remember they no longer have a valid driver’s license or any insurance.

Thanks Neighbor!

Please know that several neighbors have either my phone number or that of my brother. We reached out to ask for their help should they be concerned for my parents safety or well-being.

I’m sure you thought you were helping your kind old neighbors. Please next time just call APS. Frustrated.

Did you know we missed brunch today?

I get a call from my mom today at 2 PM. She says she found a note that we had a reservation for brunch at noon – did I forget?

Thankfully I was on the tennis court and missed the call. However, this morning with my parents was rough and I’m alarmed that she forgot that we came over, picked them up and took them to brunch.

At brunch this morning, both my parents were unusually mean-spirited and by the end of brunch, everyone was bickering. I don’t think I can have my children around my parents any longer. My mom was using profanities and throughout the meal they made fun of the people around our table. I couldn’t squelch it.

I reminded my parents they raised me practicing the mantra that if “you don’t have anything nice to say, don’t say it.”

My dad disagrees with me and says he thinks it’s okay if they don’t hear you say it.

Today at brunch, I really missed my parents and resented the people who have taken their place. Disheartened.