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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Where Did The Time Go?

By Lisa Baker

Has anyone really looked at the calendar today?  Where did January go?  Here we are one month into 2019.  Time goes by so fast.  I talked to Dad this morning on the phone; it was hard to understand all that he said.  From what I could piece together, he is tired of sitting around and no one coming to visit him.  I tried to explain to him that both my husband and I have been sick.  He told me he has never had a cold, and that shouldn’t stop us from coming to see him.  He wants to see Mom and go to his house.  He thinks he can stay by himself.  He wants to walk in the yard and in the road so he can go wherever he wants.

He thinks that no one watches him at the facility.  It doesn’t matter how many times you try to tell him that staff watches him, he can no longer comprehend that he cannot be alone and that he is being watched.  He cannot communicate because he can’t verbalize what he wants to say.  He repeats words over and over thinking that he is completing his thoughts.  Dad will never again be able to be alone.

Right now, Mom seems to be doing OK.  She has been a little dizzy and has had some pain lately, but she seems to be settling in at her new facility.

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I want you to sit down and think about this: you can’t speak clearly, and you can’t remember which words to use to express your thoughts.  You feel so isolated and alone because you are having huge communication issues.  Can you begin to understand how a dementia patient feels? How about the family that is trying so hard to keep their loved one at home? At this point, it doesn’t matter if they are in a facility or at home.  If they are at home, you or someone must be with them 24 hours a day, 7 days a week. If you have no help, you start to feel like you are losing your mind too.

Now imagine you are married.  Your spouse works outside the home.  You have to care for your children, keep up with your house work, prepare meals, wash clothes, and help your kids with homework. Now add a loved one with dementia to the mix.  Imagine they are at a point where they don’t want to bathe or eat. If you thought you had your hands full before, you were dreaming.  You are very quickly wearing yourself out.  You need help. Is it any wonder that caregivers for a loved one with dementia stand a very high chance of getting it themselves?

So what are you going to do?

Give up yourself completely? Find extra help who you will have to pay? Start looking at long term care facilities? The answers to all these questions and many more vary from person to person and family to family.

I do not have all the answers, right or wrong.  I can only do what’s best at the moment for myself and my parents.  What can I tell you then?  Well for me, I almost immediately made an appointment with my doctor.  I had no idea just how bad things could be, but I knew I would need help for me.  I knew I needed to be very honest with my doctor about my physical health as well as my mental health.

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I knew that the stress of everything could be very high, but I also knew that I needed help.  I needed someone who I could share all the burdens and business of having both parents with a dementia diagnosis.  While I do have both of my brothers, I knew I needed someone else with some medical experience to help me with things.  My sister-in-law was a perfect choice.  She has medical experience which makes it so much easier when we have to split up with one of us with Mom and one of us with Dad.  We set up a group text between my sister-in-law, both my brothers, and myself, so we could communicate effectively to each other about both parents. Early on, I mentioned that my parents had their wills already done and their POA financial and medical already picked.  All their legal paperwork was in order.

Even with that, you need a human support system. I don’t see how anyone can do this without help.

What other things can you do? Look at the questions below.  Sit down with your loved one NOW and go through these.  Write their answers down or better yet, video record them and their answers.  You may think it’s not important now, but later you will wish you had done this.  Sometimes you don’t realize just how much is gone until you start thinking about the things you can never go back and ask your loved one because they are too far in the dementia process to be able to remember.

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This disease takes so much away from us all even before your loved one dies.

fb_img_1541818060307Sorry folks, I’ve been pretty deep in thought about the process and how we’ve already lost so much of Mom and Dad even before they pass.  You start realizing you can’t just ask them the things you used to because they don’t remember.

Strive each and every day to make as many memories as you can.  Take lots of pictures.  Journal about your loved ones as well as yourself.  You never know if the day will come, so you will be so thankful that you did.

 

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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Meet the Caregivers

By Lisa Baker

It has dawned on me that I should tell you all a little more about me.  I have two younger brothers, Larry and Chad. I am married to a wonderful man named Carl.  He is such a blessing to me.  My brother Larry is married to Stefanie and they have two children.  Chad is single and has three fur babies, a cat and two dogs.  I have two children, a boy and a girl.  My husband has two children, a boy and a girl also.  Between us we each also have a grandchild, a boy and a girl.

My parents thankfully were smart in setting up their wills ahead of time and along with it a medical power of attorney and a financial power of attorney.  So we were in better shape because of that.  We just had to find the will and get copies to the appropriate parties.  Their financial institution also required that their Doctor write a letter stating that each of them were no longer able to handle their financial affairs.  Out of everything, this is one thing that took a little while to get.  We had Mom’s letter before we had Dad’s.  But once we had them both and signed the appropriate paperwork at the bank, it went smoothly.

I can’t stress enough that we all need to have a will and a medical and financial power of attorney and talk with these people so they are well aware of what you want.

You should also let these people know what insurance you have and where the contact information is for all policies.

Be aware that while some facilities take insurance, but some are private pay. Also, it depends on the level of care your loved one needs as to what the final cost is.

With my parents, my Mom needs more care around the clock.  She is unable to stand or walk.  She barely eats anything and drinks very little as well.  My Dad can still take care of his personal hygiene and doesn’t need as much one on one care.  They each needed different facilities for their special needs.  wall art

There are some great support groups on Facebook and the internet.  One that I have enjoyed is Molly’s Movement on Facebook.  This is a page that you can join and have conversations with other caregivers dealing with the many different forms of Dementia.

Also, on YouTube you can look up videos by Teepa Snow.  She is really good at breaking down what the Dementia patient is going thru.

There are many others.  These are just two that I have gotten very good information from and have enjoyed knowing that I’m not the only person going thru this with my parents.

As a family we struggle each day to get used to our new normal which isn’t normal in any way.  In fact, my Dad has been in the hospital for two weeks.  He got combative at his facility hitting two of the staff members.  The head nurse had him sent to the hospital.  His hospital stay has been very hard on us all.

He won’t talk to us at all so it’s very hard to tell if he knows us or not.  That alone is heartbreaking to experience.  He has also been in restraints during this hospital stay.

So, it seems that we are constantly facing one challenge after another.

I’ll continue to keep you all posted on our challenges and experiences hoping that they will be helpful to someone else out there going thru the same things.  Please feel free to ask questions or give me your feedback.  I would love to hear from you.