Tag Archives: dementia

A Journey…

journey-jpeg

This idea has been percolating in my head for a bit now and I’ve even been outlining.  Can you imagine? A pantser like myself actually outlining and mind-mapping?  It was fun, in fact.  It’s always been about the process.  Surveys done in social science classes, experiments and research…now you’re talkin’!

So, here goes.  We, dear reader, you and I, are embarking on our very own journey starting right here, right now (insert earworm here, never mind…I did it for you).

It is my wish that together we will help one another find hope in daily moments.  There are so many opportunities to not be humble or optimistic or purposeful or energetic.  Then again, there are so many little, everyday moments to find in the most obscure, random, downright surprising spots that I have been inspired to share them with you and ask you to share, too.

Do you have an unusual experience or nugget or story that seems to defy all reason, but still inspires you (and others) to not lose faith? Please share it here.

One of the places that seems to have sparked this journey for me is hospice.

My dad was put on hospice following a surgery gone wrong.  It allowed him to go home and be with family when he passed.  Fast forward several years and my mother was also put on hospice, but in a facility as her dementia had progressed to a point where she needed more care than she could get at home.  However, she was put on not because of some horrendous diagnosis, but because of a factor called “negative caloric intake”.  In other words what she was able to eat wasn’t doing her any good nutritionally.  Therefore, the powers that be thought she was “not long for this world” at that rate of speed.  She fooled them.  She ramped up her eating again and did something I didn’t even know was possible. She “graduated” from hospice.  And, in fact, when she did finally pass away, she was not on hospice.

So, both of those instances involved examples of hope.  Dad’s allowed him to be at home with loved ones in an environment he’d helped to create taking some of the powerlessness out of it for him and preparing him for the next step in his journey.

Mother’s was educating me (at least) that this was something that could also be overcome and was not a done deal or a “given”.  God still had the reins here, not us.  Humbling, to say the least and hopeful that she would get stronger and healthier (which she did for a bit).

Since then, I have begun volunteering with hospice myself and it is amazingly rewarding and hope-filled.  The wonderful folks I have had the privilege to meet are veterans who have, in some capacity, served our nation in the armed forces and we are now getting a chance to thank them for their service and sacrifice.  There have been veterans who served in World War II and some much younger who served in Iraq and Afghanistan.  Some are at home and just look frail, not truly “sick”.  Some who are fully aware and others I have heard of who seem to not hear a thing.  The one thing throughout that resonates is that the word HOPE is within the word HOsPicE.  It came to me one day by Divine Intervention no doubt, but just stood out in vast relief and has stuck ever since.  And I feel so lucky to be able to volunteer with such a terrific organization. It has the element of the military which I have such a place in my heart for (being a military spouse will do that to you) and being the beneficiary of hospice (by way of both parents) that it seemed like a perfect fit.  Couple that with a terrific angel of a volunteer coordinator and you’ve got yourself a winner!

What sorts of experiences have you had that were wrapped in Hope when it seemed like that would be the last emotion to be present?

I hope you have enjoyed this session of our journey and I look forward to our next leg.

 

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It’s all relative…

roses

It’s in the teens now (degrees and times matched at 6 and 9 this morning, however) and we are hunkered down with some ribs in the crockpot and the blinds closed to keep the bitter cold out.

We are blessed to have a warm home with working heat and electricity.  We are blessed to live in a first world country where even if the bureaucrats screw up on school closings it is not life being lived under some form of law that would stagnate and paralyze us all.

After being all grateful and philosophical I must say that I still keep the Phoenix temps and the Germany temps on my phone (one makes me drool most days and the other usually makes me grateful, today however it’s about 30 degrees warmer in the European city than here in our nation’s capital region).

Things can seem like they are coming apart at the seams and that you’re just going to lose it, but then you’ll catch a glimpse of a sweet child absolutely besotted with her best friend (her dog/four-legged sister) or you’ll think about someone who is facing an insurmountable task and she is kickin’ its butt.  She is not merely surviving, but thriving and you realize that good is winning and will win.

We all make choices about how to react to things in various situations whether it be to have a meltdown over a mess in the house (hypothetically speaking, of course) or something bigger.  I choose to be as a certain 7-year-old proclaimed the other day, “I’m a balcony person, not a basement person.”  Me, too, Sweet Pea…me, too.

Photo courtesy of Morguefile – http://mrg.bz/TRPDP9

The Simple Things

Butternut squash roasting

Maybe it’s an innocent question like the one my 7-year-old asked this morning.

“What was your first word, Mommy?”

“I don’t know, Sweetie.”

And, I probably never will.  When you have a parent with dementia that’s how you roll.  Now, in fairness, she didn’t always remember those little details when she was still herself, so if I start to have too big a pity party nudge me, will ya?!

These little moments are reminders from God to enjoy these times and appreciate the simple things.  Try to get this information while you can and tuck it away.  Appreciate that you’ve had your mother in your life into her 80s and know that there are families out there right now reeling from the loss of a parent or facing some difficult times where they are praying and enjoying their time now.  These people are working to be “present”.

I was standing outside church yesterday talking with another woman and remarked at how busy this month of October is getting.  It seems I’m always focused on the future because each weekend seems packed with activities.  I even heard myself say, “It’s so easy not to be present in the now when always anticipating the next appointment or engagement.”

Wow, thanks for that nudge, Big Guy.

So today, I am working hard at enjoying the now and celebrating the victories of the ones around me (both physically and in my heart).  And I plan to toast them later with a cup of Butternut Squash soup!  Cheers!

Journey

motherduck

The day before yesterday, I drove up to NJ from VA to take our mom to the nursing home where she will be staying from now on. She has been living with our oldest sister for part of the time since our dad died a year and a half ago. He was her primary caregiver.

We sisters were all discussing, this weekend, how it feels as though the older generation (of which both our parents were the only remaining sibling, with two sisters-in-law left on my dad’s side) is already gone and how that platform has already fully collapsed onto ours…making our generation the oldest guys standing. It’s a surreal feeling in that we are now the top of the heap. And yet, our mother is still here…sort of. The curtain has been drawn on her life, somewhat. She is still here to talk to, hug and see, sort of. But, yet, she’s gone in so many ways, too.

When I went to pick her up on Saturday she didn’t know who I was. She kept asking me things like, “Are you going to meet your mother?” and “Where do I know you from?” which can be approached either with a sense of humor or some patience with some tears sprinkled in…or both.

I have to say, when she first looked at me with the ‘Are you kidding around with me?’ look on her face when I told her I was her daughter, it felt as though a thoroughbred had kicked me in the chest. Upon relating this to my middle sister she responded wisely, “Yeah, it’s different when she forgets someone else. When it’s you…ugh.” True that.

When we got to the nursing home, I unpacked the chicken sandwiches and drinks I had picked up at Wendy’s drive thru on the way over (a nod to Dad) and positioned her in a wheelchair outside so we could enjoy the breezes and fresh air. There was a man sitting outside with his stepdaughter and they were giving me pointers on the wheelchair’s operation and where and how to lock the wheels, etc. We chatted a bit about the weather and politics and I realized that 7 months earlier Mother would have loved to chat about the ‘folks in Washington’ with this like-minded individual. Yet, today, she didn’t even know I was one of her chicks. Dear Irony, You stink. Love, Me.

As I was leaving the building with tears streaming down my cheeks, I felt compelled to report to the nurses and aides that I couldn’t say goodbye. I told her I was going to the restroom and just…left. It felt like I was abandoning her and yet I knew that this was the best thing for her. She had already been in a daughter’s home with an aide or two (at times) and was too much too handle. But, it still feels cruel.

It makes me wonder why God allows this, but I really think that she is an instrument in his plan to teach the rest of us lessons on patience, acceptance, love, grieving, loss and appreciation for what is. Because you know what? It is what it is. And as my daughter’s 7-year-old friend says, “You get what you get.”

I called Mother today and she knew who I was, asked to speak to my daughter by name and even waxed eloquent (one of her favorite phrases) about how wonderful the ladies in the place were being to her. It’s the little gifts we need to savor and tuck away. Thank you, Mother, for all the countless lessons you’ve taught us and continue to. I love you. We all do.

Darned dementia

The alz.org website defines dementia as “a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer’s is the most common type of dementia.”

“Dementia is not a specific disease. It’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities.”

There are websites out there to help the caregivers and/or those who love the person with dementia. There is, however, nothing like the real deal of actually loving and interacting with a person with dementia and/or Alzheimer’s.

Denial of the loss (slow as it may be) of the person you once knew, often the person who took care of YOU is very powerful…role reversal at its finest.  Anger and frustration at their feet of clay are not uncommon.  Even gallows humor finds its way in as a coping mechanism…or maybe that’s just if you’re Irish, like me.  A gift I’ve found in having the “gift of dementia” in our lives is that I now realize that she has the ability to really only live “in the moment” which is what we’re all striving for on some level or other.  And, yet there’s a bit of irony in that she’s not completely aware of it.

There are a myriad of things that you’ll notice when interacting with someone with dementia. One of the more puzzling ones to me is the loss of a sense of time. The book  The 36 Hour Day explains it well. The internal clock on your loved one has begun to malfunction. So, he can see that the clock reads 3:15, but can no longer process what exactly 3:15 means. It’s interesting because God has given me a similar learning scenario with our daughter. For the longest time she didn’t understand which meal was to come next (even if we’d had lunch an hour before, she was still anticipating that the next meal was lunch). Funny how God draws these actual parallels for us, isn’t it?

The book suggests using a timer or some sort of device to let the person know that you will return and a timer to help them process the time until you return. Like anything in science it is not exact and so some solutions will work and some won’t depending on the individual.

I also found some items that are recommended for people with dementia. The phones with the picture buttons look great! I’m ordering some of the puzzles for our favorite patient to try!

For the caregiver, there are several great free tools on this site.  Always remember to put your own oxygen mask on first before helping others on with theirs!

What have your experiences been like? What worked and what didn’t?

Alzheimer’s PrayerMemories