One Year after Diagnosis

By Lisa Baker

Hi everyone.  Hope everyone is doing well and enjoying the weather.  As I sit down to write my blog post I realize it has now been one year since we got Mom’s diagnosis of dementia.  None of us could have even imagined all that we have gone through.  Sometimes it seems as if it could be a bad dream.  But it isn’t.

Dementia can be so very complex and so very different for each person.  So please know that I am in no way an expert on the subject. I can only tell you things we have experienced and things we have learned along the way.

If you think about everything we have experienced in one year, lots of patients and their families go through this sometimes for years before their loved one passes away.

Can you imagine living for years with dementia?  Many families can’t afford help to care for their loved one.  So they do the best they can everyday, twenty four hours with no or very little help.  Let that thought sink in for a while.

This is a very hard disease.  Hard on the loved one that has it and hard on the family members that take care of them.  It is different for each and every person.  What works for one may not work for another.  The worst part of all is when you realize that you are losing your loved one bit by bit every single day.  Until you have lost them completely; yet they are physically still alive.  At this point they don’t remember your name or that you are a part of their family.  It’s very heartbreaking.  You begin grieving when you first get the diagnosis and continue to grieve even until they die and after.

photoYou keep thinking that it’s got to get easier yet it really doesn’t.  Even now I still find myself suddenly in tears over the smallest things because they remind me of Mom.

About a week and a half after Mom passed, it was her birthday.  Now a month and a half later and it’s Mother’s Day.  So we are left trying to figure out how to celebrate, yet missing Mom so very much.

If you think your loved one my have dementia go with them to their Doctor appointments.  Talk with their Doctor about any small issues that you are noticing.  Remember there is no cure but there are some medications that do seem to help.  Try not to correct your loved one, it only confuses them more.  Try to go along with their conversation or gently redirect them.  Remember that just as challenged as you feel they are also feeling confused.

I wish all mothers a very Happy Mother’s Day! Celebrate with your families and make plenty of memories.  Even take lots of pictures.

Hospice

By Lisa Baker

I know…I know…you hear “hospice” and think the end.  Mom has been on hospice before FB_IMG_1551055644572just 3 or 4 months ago.  Then she seemed to get better and graduated from hospice.  Now we are looking at hospice again.

Hospice does more than just help as a loved one gets close to passing away.  They can help with medication, supplies for incontinence, and care of skin while using these supplies including adult pull ups, diapers, skin care lotion, and creams to help with skin break down.

They also can help with bathing and dressing your loved one as well as walkers or wheelchairs.  Their care doesn’t stop with the patient: they also help family members.  They provide pastoral care and many resources for the family because you are all going through this together.

It takes very special people to be involved with hospice care including nurses, nursing assistants, and even doctors.  Hospice does not always mean the end.

During this challenging time, I also lost a very dear friend to cancer.  I have worked with her for 16 years.  We used to get to work very early and have breakfast together and talk about our families.  We celebrated our joys and comforted each other during especially trying times.  I can’t even begin to express the importance of our friendship.  I also find it hard to express how much she will be missed.

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I know you must be thinking, “what does she have to do with dementia?” You are right; she has nothing to do with dementia.  Honestly, she and I both started having issues in our lives almost at the same time.  For her it was cancer, and for me it was my parents’ dementia. It was very hard for us to physically be there for each other, but we stayed in touch.  We would text and send cards to each other. We both knew that if it weren’t for our hardships, we would indeed be there for each other. I’ll miss her so very much here on Earth, but I have faith that we will one day see each other again.

We are thankful for each day we get with our loved ones and pray that we will have more time for more memories. Tell your family and friends you love them.  Give as many hugs as you can.  Forgive easily. For no one is promised tomorrow.

**This post was written on March 21. On March 24, my mother passed away and is free from dementia.

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Get Out of Jail, but Don’t Pass Go

By Lisa Baker

Mom has been discharged from the hospital to a rehabilitation facility.  She will be here for 20 days.  We hope at that time, she will be able to return to the assisted living facility she had been at before her hospital stay.

IMG950063I talk about my parents and their facilities, but there are many families out there who aren’t able to afford any facility.  They often hold full-time jobs outside of the home and come home to care for their loved one for the remainder of the day and evening.  These people often are married, have children and a home of their own that needs tending. It isn’t easy to care for a dementia patient. Sometimes they don’t eat or drink.  Often, they refuse to bathe.  They sometimes will sleep all day only to be up all night.  They try to do the things they used to do when they were younger such as cooking, except now they forget they turned the stovetop on, or that the milk goes in the refrigerator and not the pantry.

The caregiver in this type of situation is spread very thin. They are trying to juggle way too many balls. They need help and are way too tired and short of time to find help. Often, they don’t have the extra funds to be able to use a facility or hire extra help to come inside the home.  In this type of situation, it’s even harder for the caregiver to take care of themself.

FB_IMG_1534039807489In fact, at a Teepa Snow conference for the positive approach to care, she told us that it is important that you have a group of trusted helpers to care for your loved one.  You can’t do it alone and take care of yourself.

For now, Dad is doing OK.  He still tries to get out of the door every chance he gets.  He also still stumbles over his words.  Many times just saying, “blah blah blah blah” as if he is really saying words.  I have many times thought surely at some point our lives will settle down when they get used to their new homes.  Now, I don’t think our lives will ever settle down.  There will always be something with them whether it’s another UTI or behavior issues that require a medication change. Things will only settle down when they are gone. Then, we will miss them terribly.

Sorry folks, I’m still realizing that we lose an important part of them each day. There is such a huge difference in them now and even one year ago.

In closing, check out this last picture.  It gives you some ways to take care of your brain. Until next time, make memories!

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Finding the right solution

By Lisa Baker

Here we are the week before Christmas and I’m writing yet another blog for December.

Mom and Dad have been together for two weeks at the same facility sharing a room.

Things seem ok at first.  But then they start arguing.  She feels that she must correct him and he is far enough along in his dementia that he doesn’t remember exactly the way things were.  He gets very agitated the more she corrects him.  So right now I’m not sure how this will end.  The facility wants us to give it a little more time, so that’s what we are doing.

pictureExcept for the phone call to let me know Dad put his fist through a double pane glass window.  No, he did not get hurt.  Seems he had just enough presence of mind to wrap the curtain around his hand before hitting the glass.  We now will be replacing this lovely window.

A day or two later I get another phone call.  Dad is acting very unlike his normal self.  Muttering, not really talking.  Had not slept for 48 hours.  Not taking his medicine.

The nurse was calling to let me know that she was sending him to the ER.  We later find out that he does have a UTI.  Word to the wise here.  Dementia patients can and will have very strong reactions to a UTI from being very unresponsive to bouncing off the walls.

ER sent Dad back to his facility.  Where he then tries to overturn any furniture that he is able to move.  The nurse sends him back to ER where they now give him something to make him sleep and bring him back to his facility.

He slept all day and most of the early evening.

It was decided that at least for that night it would be best for Mom to sleep in another room.  The next morning Dad is still just mumbling, not talking and will not take his medicine.  But he is also a bit on the combative side, even hitting Mom.  This time he was admitted into the hospital and will be there at least a few days.  They will be doing other test just to rule out other possibilities such as other infections.

Mom misses him and begs to go see him.  However, at this point he isn’t even aware of where he is.  So no visits right now, they would only upset her even more.

We are hoping that he will be back with her in a few days and that his temperament will improve.  If not, it is yet again very possible that we may have to move Mom to another room or even another facility.  Above all we want them both to be safe.

Here’s hoping the New Year will bring us and all of you much peace and happiness.

New kind of holidays

By Lisa Baker

Hope everyone had a wonderful Thanksgiving.

My family did not do our usual Thanksgiving together.  My parents are both doing well and are still in two different facilities.  As a family we have had so much change for us this year.  I feel that we are all still trying to deal with our changes.  Each of us in our own way.  Maybe I should have pushed for us to be all together but I too feel so out of sorts when I think of celebrating the holidays.  I saw my Mom Wednesday after work.

Change is what our lives seem to be all about!

I got a phone call on Monday the week of Thanksgiving.  It was from my Mom’s facility from a gentleman in charge.  He called to tell me that Mom has been and still is doing very well.  So much so that she no longer qualifies for hospice care.  Yes, that is good news.

But that means we have to move her out by the end of the month – yes, the end of November.  So, we are back to square one trying to find a facility geared to her current needs.  That part is kind of bad news.

If you have ever had to go through this you will understand.  It’s not as simple as picking a place and just moving her in.  There is a process.  Paperwork to fill out.  The facility will want to send someone to evaluate her to see if she indeed will qualify for their facility.  Then more paperwork.  If she is approved, you then have to get her packed and arrange for the move.  Find out if the new facility requires anything that needs to be purchased for her.  Then getting her settled.  We are checking to see if it is possible for her to be moved in with our Dad at his facility.  Right now, it’s looking like that may work for us.  I’ve got several meetings to attend concerning this but we are hopeful that it will work out.

It would be so much easier getting to see them both if they are at the same facility and would help us to settle on how we want to celebrate the holidays.

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We did get Mom in with Dad!  She moved in last Thursday.  It was a tearful reunion.  A staff member at Dad’s facility got flowers for him to give Mom.  I don’t think there was a dry eye in the house.  They both seem to be doing very well. Happy to be together again.

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Christmas is only a few weeks away.  So what kinds of gifts are we getting Mom and Dad?

Shower or body wash and shampoo are always great items to gift.  As well as socks. A clock that also shows the correct day of the week as well as the time makes a great gift too.  Clothes are always welcomed but you will need to remember to mark their name inside the clothing items.  Wordsearch books and coloring books are great gifts too.

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Their favorite snacks or candy and even fruit can make great gifts.

Hope everyone enjoys the Christmas season.  Make time to be with all of your loved ones.  Don’t forget the ones that are in memory care facilities and nursing homes as well as Hospice.  Make beautiful memories that you can treasure for a lifetime.

Merry Christmas!

Phone Calls

By Lisa Baker

Fall has arrived!  Cooler weather and beautiful colors as the leaves change.  The stores are all decorated for Christmas.

Hold on, my phone is ringing.

Me: Hello

Dad: Lisa this is Daddy.  How are you doing?

Me: Good Dad.  How are you?

Dad:  I’m in a mess.

Me: Why?  What’s wrong?

Dad:  I need to get out of here.  I don’t have anywhere to put my stuff.

Me: Dad you have plenty of room in your closet.

Dad: No!  I need to get these things home.

Me: You need your clothes there, Dad.

Dad: When are you coming to get me?

Me: Dad, I have to work.  I can’t do anything until after I get off.

Dad: You can leave work now!  I want you here now!  You hear me?!?

Me: Yes, Dad I hear you.  I can’t just leave work every time you call.  I’ll get fired.

Dad: You don’t worry about that.  I need you here now!! Hurry up and get down here.  I’ll be waiting.

*dial tone, he hung up on me*

I know he is fine or the staff would have called me, and I can tell from the phone number he is at his facility.  So, I know he is safe.

Back to work.  I love the fall.  It’s a beautiful time of year.  People are shopping for Thanksgiving and Christmas.  The time changes, we fall back one hour.

Excuse me, my phone is ringing again.

Me: Hello?

Dad: Lisa, this is Daddy.  How are you doing?

Me: Dad, I am good.  Trying to get my work done.

Dad: Lisa, listen.  I am at Allied and I need you to come pick me up.

Me: Dad, you’re at Allied?

Dad: Yes, Lisa.  I need you to hurry up and get down here to pick me up!

Me: Dad, I’m still at work.  I’m not sure how much longer I’ll be here.

Dad: Lisa, I’ve done told you I need you to get here now! RIGHT NOW!  To pick me up.  Don’t make me wait!

*dial tone, he hung up again*

I see that he called me from his facility, so I know he is not at Allied.  Also, Allied has been gone for years now.  That building is now Honeywell if I’m not mistaken.

Ok now, where was I?  Talking about fall.

It is such a beautiful time of year.  Not too hot, not too cold.  Just perfect.  Christmas trees and Christmas lights start being put up.

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Yes think we could all use a little prayer now and then.  Especially this one.

So, let’s see now, my phone has rung twice in about fifteen to twenty minutes.  Just while I’m getting my blog post together.

On a regular work day, I put my phone on silent.  Hard to scrub and have your phone ringing.  I check my messages during lunch.  While Dad won’t leave a message, he will continue to call me.  By lunch I could have as many as ten missed calls from him.

I also check my voice mail.  If the staff at his facility are really trying to get me they will leave a message.  If it is urgent and they can’t get me they will then call my sister in law.

By the time I get off work and get home there may be as many as 22 missed calls from Dad.

He has told me anything from, “I’ve got all this corn that I’ve got to get home.  You got to come help me get it home,” to, “they are kicking us out, Lisa I need you to come get me.”

I never know just what the story will be from one call to the next.  I try to deal with each one the best I can.  And I go to see Dad as much as I can.

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This and That

By Lisa Baker

This post is a little of this and a little of that.  My family and I celebrated my Dad’s 81st birthday this month.  We were able to use the family room at his facility to celebrate in.  All of his remaining siblings were able to come. He did not realize that it was his birthday so it was indeed a surprise.


We all had a good time visiting with Dad.  I made his favorite cake.  A Japanese fruit cake.  This is usually made as a layer cake.  To make it easier to carry I made it in a 9 by 13 pan as a single layer cake.  Dad gave me a wonderful compliment.  He said it was as good as his Mom’s.  Over the years I have often made this same cake for him.  Always he would tell me it’s not quite as good as his Mom’s.  So to me that was rewarding and a memory I’ll never forget.

Of course, during the celebration Dad kept saying that he wanted to pack up his things and go home with one of us when it was time to go.  We had to keep telling him to just hold on and enjoy your party.  We had to leave one at a time while whomever was left kept him busy talking.  It was a good day.

Now a little of that.  During the week leading up to Dads birthday we had some water issues at home.  I’m living in Mom and Dad’s house now.  We didn’t have hot water one night.  So, there I was trying to figure out what was wrong as well as who have they called in the past for water issues.  They are both at a point where if I had asked them I wouldn’t have gotten the answer.  I called my neighbor which is also my cousin and ask her who she used.  She was able to give me a name and number of a gentleman that proved to be honest and fair to help us out.  The problem was an easy fix.  But while he was here he was able to tell that we also had another issue brewing.  He was able to fix that as well.  It was more than we expected but keeps the second issue from becoming an emergent fix later on.  Now we have the name of an excellent plumber.

I’m starting a book with names and numbers for different things that need to be serviced at the house.  Just one more thing that you miss when you realize your parents both have dementia so you can’t rely on being able to ask them.

bookI’ve also finished reading a book that some of you may find very helpful.  The 36-Hour Day. By Nancy L. Mace, MA and Peter V. Rabin’s, MD, MPH. I got my copy online.  I think it cost me around $6.00 or so because it was a used copy. It’s a very good book.

Life is ever so full and ever so busy.  My parents both want each of us to visit every day for several hours each day.  They no longer fully understand that we also have to work and take care of our families as well.  I run out of hours.  I could use a 36-hour day in order to accomplish everything I need to do as well as spend time with each of them.

You start to feel very overwhelmed with everything.  Even with having them both in a facility they are constantly on my mind.  There isn’t a day that goes by that I’m not doing something involving them, from visiting with them to paying bills.

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If you are dealing with dementia in any form with a loved one hang in there.  You are not alone.  Until next time!

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