Memory Necklace

I received the most lovely and thoughtful gift last week.  An engraved necklace that used the pattern of my father's handwriting. A special friend who also knows the pain of a parent with Alzheimer's ordered it for me.

My friend used a photograph of the little note my father gave me decades ago as the pattern.  How marvelous is that?  

This is the first Christmas since my father passed, so this memento is particularly special right now and it is lovely to have his words close to my heart. 

Talking to Kids about Death

I've been mulling over sharing how my little family dealt with the topic of death this year.  It took me a few months but I'm finally ready.  Earlier this winter my father passed away after a long battle with Alzheimer's.  A battle so long that it encompassed my girl's entire lives.  As a result his death was not a surprise, but something we had prepared for for quite some time.  However, there really is only so much you can plan for, even with an expected eventual death there are unexpected emotions and realities.

My father's decline was experienced for some time, and he was living in a Care Home when he passed.  However, the actual passing happened quickly and with only a little notice.  As a result I had to fly out unexpectedly while they were at school to be there in time to be with him as he left this life.  

When I returned home a few days later I started conversations about what happened, his death and how they felt about it all.  It was a process and I found that my youngest was the most effected, she didn't want me out of her sight for quite awhile after my return.  I had to reassure her frequently and spend extra time with her so that she could feel secure again.

Here's what I did and what I would do differently if I could.

Death
What Helped

1. Honest communication - I allowed my girls to ask questions and to talk about Grandpa's death when it was comfortable for them.   I purchased a couple books online and borrowed one from the library that dealt with death and grieving.  Although no book is a perfect match they at least offer topics for kids to discuss with you.  You can also talk about what ways you agree or disagree with the book, this may be especially important with your family's beliefs on the afterlife.  
2. Talking about Highs and Lows - We came up with lists of the good and bad parts of Grandpa passing.  For example a good was that Grandpa had his memory back and was whole, also that he got to be with all of his friends and family that were already in heaven!  A low being that we missed him and wouldn't get to see him anymore.
3. Reassurance - My youngest had a *really* hard time with being away from me after my dad died.  This is mostly because I left while she was at school, so she didn't get to say goodbye.  But also because she folded that feeling/fear into the permanent goodbye of my dad.  Reassuring her that I'm not going anywhere and that I plan to live a long life was helpful to her security.

What I would do Differently

1. I would have prepared my girls better the day I flew out.  Either by letting them know that there was a possibility I might have to leave that day, or by leaving them messages.  I was in such a hurry and in the midst of grief that I didn't take the space to think of them.

The time between when my Dad died and his funeral and then burial were all weeks and months apart.  The girls joined me at  Dad's funeral almost a month after he died.  We used that time to prepare the girls by talking about what a funeral/memorial service looks like so that they would know what to expect.  As a result they were pretty comfortable on that day and handled the situation really well. 

Memorial Service/Funeral

What Helped

1. Describe ahead what a memorial service usually looks like.  Talk about how some people may be laughing at times and smiling, and at other times crying.  That both are normal!  Let them know who will most likely be there and that lots of people will be strangers to them, but were close friends to your loved one.
2. Include your kids in decisions that they can have some say in such as what they will wear.  We were making our own flower arrangements for the church and my oldest was able to help grandma select the flowers and arrange them.
3. Go over rules regarding behavior and expectations, especially if this church (or any church) is new to your kids.  Talk about voice level, running, etc.
4. During the service I had the kids sit with my husband (behind me) so that I could experience my own feelings without them having to respond to or take care of me.  I did let them know ahead that mommy might be sad or cry, but that this is totally normal because I am sad about Grandpa passing.  Also that it's okay if they cry and okay if they don't.

Burial

My family waited to bury Dad's ashes until the summer, so it was quite a few months after his memorial.  During the in-between time we talked more about death and I prepared them for the burial.  What it would look like, who would be there and how they could be involved.  

Our situation was a little unique in that Dad was buried in a very small private community cemetery.  As a result we did the actual digging/burying ourselves.  The kids were invited to participate and they both did (happily).  In a more traditional burial you could have your kids place flowers on the grave, or toss flowers on top of a casket.   

We also had a time of remembering Dad where each family member shared a memory of Dad.  The kids were included in this part and were warned ahead so they could prepare. They were given the choice to opt-out, but both of my girls shared something.  Kids could also share a poem, favorite joke or even sing a song.

There is nothing I would do differently with the memorial and the burial.  They were both positive experiences with my girls and I noticed that they were able to process his death as a normal part of life.

We still talk about Grandpa and when I had moments of sadness after his passing I made sure to be honest/open with them.  That way they would normalize sadness and grief as normal reactions to loss.  I let them share how this made them feel and what their hopes were about death ("that mommy lives a long time").

For more information on Dementia 

Talking to Kids about Alzheimer's

Recordable Books Treasured Memories
Goodbye Dad
Visiting Memory Care/Nursing Homes with Kids
Gift Ideas for Loved Ones with Dementia

Talking to Kids about Alzheimer's

My father had a long journey with Alzheimer's that spanned over 14 years. When my Dad started showing symptoms I was a young adult living in another state, focused on my own life, madly in love and planning my wedding.  It took me awhile to take my Mom's updates seriously and to recognize the symptoms.  

The first time I acknowledged the reality that my Dad was changing was during a visit when he kept repeating the same conversation over and over.  He also read newspaper articles and headlines (out loud) repeatedly.  And most alarming at a family function I overheard him talking and realized that he had forgotten that I was there even though I was standing just a few feet from him.  At this point I was newly pregnant with my first baby.

By the time my baby girl was born Dad was clearly confused.  He didn't know where he was or what we were doing, but he was (mostly) content.  He was also a fantastic grandfather.  

My parents came out to help after my daughter was born and he would hold her, love on her, tell me how beautiful she was and remember her name.  

As she grew he celebrated her milestones along with us, rejoicing over her walking, eating foods and generally being an adorable baby.  By the time she turned 3 he was asking over and over when she'd be starting kindergarten since she was so advanced.

When my oldest was little he would read to her for hours.  Repeating the same favorite book over and over didn't bother him in the slightest since he didn't remember that he'd just read it.  They would talk and read in the backseat of my car happily, he thought she was marvelous.

I didn't talk much to my oldest about her grandfather's disease at this point, since she didn't know anything was different or out of the ordinary.

By the time I was pregnant with my second daughter my Dad had slipped quite a bit more.  Multiple times a day he would see my big belly during visits and ask when I was due.  He was sweet and excited for me but becoming increasingly less patient with my 3 year old since he was regressing in his emotional maturity at this point and starting to match hers.

He would get angry with my oldest and had a hard time sharing or dealing with her typical 3 year old behavior.  As a result we had to move Dad to the front seat to keep her safe and make sure she always had mom or grandma with her when grandpa was there.  This was a really tough transition for me and also for my daughter.  She started to realize that sometimes grandpa would react "funny" or "scary" and didn't know why. 

I purchased a couple books around this time to help explain his illness to her.  For the most part they were pretty wordy and advanced so I had to simplify it for her.  It's also tricky because every Alzheimer's journey is different.  Some symptoms are similar but we couldn't relate exactly with the stories in the books.

Still My Grandpa
What's Happening to Grandpa

In time I found that just talking about his disease was easier.  We would talk ahead of a visit (we saw them about 4x a year), during the visit and after the visit.  But I kept the books around so they could grab them for me to read (or read to themselves) whenever they wanted.

How I explained Alzheimer's:

Using developmentally appropriate words I explained that grandpa's brain isn't working well anymore.  That he has an illness that is progressing and parts of grandpa keep going away.  I gave examples of brain-parts that no longer work as the deficits kept progressing such as: his patient part, the part that tells his tummy he's full/just eaten, the part that takes turns, the part that says please and thank you.  Later I had to explain that the part that tells him it's time to use the potty or go to sleep (this was easier to explain as her little sister was potty training around the same time).

I told her that he was slowly going backwards in his brain, that he was getting younger while she was getting older.  

These simple explanations seemed to satisfy my oldest, and later my youngest.

Focus on Strengths:

At the same time we were talking about what wasn't working with my Dad I also highlighted what he could still do.  To focus on his strengths!  What he still tolerated/appreciated: hugs, a picture, reading to him, watching a show he likes, taking a walk on the beach, etc.

I also pointed out what my kids did that Dad loved.  How he lit up when they talked to him.  How he hugged back.  How he smiled whenever they came close.  How he remembered my youngest daughter's middle name (which was amazing!).

Talk about the Past:

Since my Dad was not able to tell them stories about his childhood or mine I filled in the blanks for him.  I told my kids about what Dad used to be like (and I still do!).  Showed them photos, videos, slides and especially highlighted the good memories as well as my Dad's character qualities/personality.

Reassure and Answer Questions:

During our regular conversations about Dad I found that their most pressing concerns were about me.  They needed to hear that I wouldn't get Alzheimer's and leave them.  So I made sure to tell them over and over that scientists are working really hard on a cure right now and that although it will be too late for grandpa it will be in time for me if I was to get the illness.  This seemed to satisfy them.

I had our family participate in a Walk to End Alzheimer's and pointed out all of the people coming together to raise money for a cure.

Remember to:

• Allow your kids to ask questions freely (or not, don't push the topic if they are not ready).
• Have time before, during and after visits to discuss what they see and feel.
• Be honest, if you don't have answers let them know that.
• Reassure them and point out what they are doing well.
• If your kids aren't big on talking try using art.  Ask them to draw how they feel, or draw the grandparent, visits, etc.
• Let them know that it is hard for you too.  Share your feelings so they know they're not alone.  Don't hide all of your pain or they won't learn that it is normal.
• Take LOTS of photos of your kids with their grandparent.  You can look back on these photos together to remember, reinforce their relationship and to fill in gaps once grandpa is gone.
• Reach out for help if you need it from a professional counselor or support group.

If you have a parent or loved one with dementia I highly recommend the book "The 36-Hour Day".  This book was very helpful for me to understand what was happening to my Dad, what would be coming and ways to make our relationship (and his relationship with my kids) go more smoothly.









For more on Alzheimers:

Recordable Books Treasured Memories
Goodbye Dad
Visiting Memory Care/Nursing Homes with Kids
Gift Ideas for Loved Ones with Dementia

Recordable Book - Treasured Memories

This weekend my girls and I pulled out this very special book for the first time since my dad died.  It was super sweet to hear his familiar voice reading along with the pages in the book (and my moms too).

The book was recorded a few years ago when dad was able to read and understand.  At the time I bought it because my parents lived far away and I thought the girls would enjoy hearing their grandparent's voices.

Both girls said it was "so cool" to be able to hear grandpa's voice whenever they wanted.

I agree.

I highly recommend these recordable books.  If you have a parent with dementia or even a grandparent/parent living far away they're a fun treat for your kids.  And if you're in my shoes they're an irreplaceable treasure once your parent is no longer here.

They're a little pricey but worth every penny!

Get your own books here:

Goodbye Dad

The day after we returned from our cruise vacation I received word that my dad had contracted influenza and was deteriorating quickly.  Less than 2 days later he passed away.  I was able to fly out the next day to meet up with my mother and sister and we were all together as he took his last breaths. 

It's a lot to take, even though my dad has been slowly passing for years due to his Alzheimer's disease this ending was much quicker than we had expected.

Fortunately my girls and I had been out to see him only 3 weeks before and had a lovely visit to remember him by.

It is hard to know how to get back to normal; driving carpool, running errands, making dinner while also processing loss and planning for his memorial.  There isn't a handbook for how to do this, and I'm just stumbling along.

So if I take a break from blogging you'll know why.  Or if I decide that blogging about popcorn recipes, vintage toys, vacation tips or how to talk to kids about dying you'll know that that is helping me move forward.  Either way, know that I'm thinking about my dad every day.

This is the last photo taken of me with my dad in early January.

And this is the first photo I have with my dad.  I was a 70s baby as you can see.  My dad was older in this photo than I am now.  

For more on Alzheimers:

Visiting Memory Care/Nursing Homes with Kids
Gift Ideas for Loved Ones with Dementia

Visiting Nursing Homes with Kids - Tips and Advice

Visiting a nursing home/care home with your preschoolers or school aged children can be a challenge.  When you add children to an environment with unpredictable adults and then add in a (potentially) emotional situation it's no surprise that it can be very stressful.

However, I've found that the more you prepare your kids ahead, and normalize (talk through) any potential obstacles the smoother the visits can be.

For example before going to the care facility take some time and talk with your kids about how your parent/grandparent/loved one is doing.  What their current limitations are (sight, walking, talking, ability to feed themselves, etc) as well as what they can still do.

Also talk ahead about:

1. Smells - Poop/Urine
2. Sounds - Screaming, singing, bad words, laughing
3. Sights - People in wheelchairs, strangers smiling at or talking to them.
4. Rules - Boundaries, where they can and cannot go (for example bathrooms in the units may be off limits), food is just for residents, etc. 

Try to have a conversation about what they might see and what that would feel like to them, how they might react.  You could even do a little role  playing for what to do if someone wants to talk to them, etc.  Remember that your loved one might not be exhibiting these behaviors, but someone else in the facility may be.

Also talk about how the kids should act, what is and isn't allowed.  I'd suggest low voices, no sibling fighting, no running, etc.  

Come Prepared

Bring activities for the kids to do alone, together as well as with your loved one depending on how the visit is going.  When we first visited my dad my oldest was pretty apprehensive and in order to have her feel safe/comfortable she spent most of that first visit playing her Nintendo DS.  She was with us, but able to be in her own little world.  As she became more comfortable on subsequent visits the video games weren't necessary anymore and she was able to interact with us.

Consider bringing artwork that your kids have made or pictures of them to put up in your loved ones room.  That is a way to keep them engaged and to show that they are important to your loved one's space.

Activities to do Alone:

Game Players, books, tablets with games/videos

Activities to do with sibling/others:

Coloring, puzzles, painting, simple games

Activities with your loved one:

My dad joined in a little bit with painting (with some assistance).  He had watched the kids painting and I decided to see if he'd like to try and he did!  Now all of the above activities can be done in the same area as your loved one, our kids did simple puzzles (to be finished quickly and put away easily) at the table with dad.  He enjoyed watching them/us even if he didn't actively participate.

Another activity is reading together.  Illustrated children's books like James Herriot's Treasury of Children's Stories were popular with the kids and my dad, they all appreciated the beautiful drawings.  You could also look at photo books together (like the personalized ones we made for him).

If your loved one is still able to talk and communicate somewhat try to engage them in questions and be ready to write down what they say, as these gems are little gifts.  Or perhaps have your phone make recordings of your conversations.

And my best advice, take photos!  Take as many photos as possible of your kids and your loved one.  Depending on their ages your children may not remember the visits or even that they knew your loved one, so photos can help fill in the gaps when you tell them about this special person in the years to come.  

Do's:

• Prepare your kids ahead.
• Make sure they're well rested, well fed before a visit (and bring snacks, for your loved one too) and have used the bathroom.
• Bring activities and things to do.
• Be flexible, you may need to adjust the visit depending on how your loved one or kids are doing.  Consider taking a bathroom or drinking fountain break if your kids are struggling.
• Answer their questions, even if it's just to tell them that you'll talk about it later if it isn't an appropriate time right then.
• Give lots of positive feedback to your kids during and after visits.  Try to leave on a positive note.

Do Not:

• Make the visit too long, have a reasonable amount of time for all involved.  A few shorter visits (2 in a day for example) are better than one really long one.
• Expect or force your kids to preform if they don't want to, no forced piano playing or singing for example.
• Force hugs or kisses by your kids.  Let them interact with your loved one as they feel comfortable.

For more information on a parent with Alzheimer's check out:

Gift Ideas for Loved Ones with Dementia

Gift Ideas for Loved Ones with Dementia

If you have a loved one with dementia picking out gifts at the holidays or birthdays can be especially challenging.  I know first hand as my father has been living with dementia (Alzheimers) for over a decade now.  In case you are looking for a last-minute Christmas gift I thought I'd share some of the presents we've given him in the last couple years.

Photo Books

Personalized gifts have been the most successful.  I started out a few years ago by making a photo book (from Shutterfly) about our immediate family.  I included photos of his three children and my mom.  I selected photos of us together with him through the years from infants to present.  I added a little bit about his grandchildren, but not much as there are so many (8) and they keep changing. :)  

Dad's book about his family.

Dad reading one of mom's year-in-review books.

Mom would bring it on their trips out to visit me and he'd look at it over and over, for hours sometimes.

Tips 
1. Write simply, short sentences with large font.  
2. Quality over quantity, don't put too many photos on one page.
3. Include names, put them on every page if possible.

This book and other Shutterfly year-in-review books that my mom made have been very well used the last few years.  My mom now brings a book or two with her every time she visits Dad and they go through them together.  I can't recommend a book enough!  You can do children, marriage, favorite pets, etc.

Photo Pillow

Last Christmas I made my dad a personalized throw pillow (also from Shutterfly).  We knew that it would be his last Christmas at home, so I thought it would be a good transition object when he moved to the memory-care facility.  I put a photo of mom and dad on the front and on the back smaller photos of him with us kids and mom.

It was a huge hit.  Dad looked at it over and over after opening the present and kept remarking at his photo on the front.  He was amazed that it was them!  A couple months later when he moved the pillow went with him, and the staff use it as a transitional object to get him into bed or his room.  Saying "lets go see your wife".  

It has amazingly remained in his room and hasn't needed to be laundered as it stays on top of the bed during the day but they place it up when he's sleeping.  It is washable however.  The quality was pretty fabulous too!

Posters

Once dad moved to the memory home I had a big enlargement made for his wall, a photo of my mom.  That way he can see her smiling face all the time.  This Christmas I'm gifting another enlargement, this time of his girls (mom, me and my sister).

Tips:
1. Posters of favorite pets, vehicles or vacation spots would be great ideas too.

Other ideas:

Simple Photo puzzles.
Personalized photo mugs.

So there you go, a few ideas to help bring their past into the present.  

Merry Christmas and I hope you are able to make treasured memories with your loved one, remember to take lots of photos!