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.

quote

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

quote 2

 

 

 

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.

 

Tough Decision Making

By Lisa Baker

After my Mom’s dementia diagnosis, she and my Dad went to stay with my brother and his wife.  My brother’s wife has a work from home job that made it easier for her to keep an eye on Mom and yet keep them both together.  This worked well for all of us.  We knew they were safe and getting their meals while Mom just relaxed trying to recover somewhat from her hospital stay.  Dementia also turned their world upside down too.  They were so used to relying on each other.  As we started learning more and more about dementia, we realized that Mom has had this for a while, we just didn’t pick up on it.  But we also realized that Dad had some of the same symptoms.  We started to question ourselves, could he have dementia as well?quote

Little did we know that we were closer to finding out the answer to that question than ever before.  Mom had a seizure one evening while staying with my brother.  She had never had one before.  So this put her back in the hospital for more tests.  They did not find an exact cause for the seizure.  It is possible that maybe from her eating and drinking so little that it threw her off enough to cause the seizure, but we never got a definite answer for its cause.  They did start her on a low dose of medication to help with seizures.

During the time she was in the hospital, my brother and my Dad had gone to visit her in the hospital.  After getting back home, my Dad decided that he was going to walk home to his house 20-something miles away.  He is 80 years old and certainly did not need to be walking the road.  Dad ended up being taken to the ER.  He was very agitated and upset and confused.  The doctor kept him overnight and they did some tests.  It was decided that he needed a psychological evaluation, which would help to give us a determination as to whether or not he also had dementia.  Because of insurance he had nothing wrong with him to stay at the hospital he was at which meant they had to find a psychological center for him as a geriatric patient.  The closest one that had an opening was in Lancaster, SC.  He stayed there for a week.

During this time, we found out that Mom was going downhill faster than we thought.  She wasn’t eating or drinking.  We were advised to consider putting her on hospice care.  You can only imagine the rollercoaster of emotions we were on at this point.  Because of the recommendation for Mom and we needed to find a place for her such as a nursing home.  The facility Dad was at agreed to keep him for one more week.  During this time, we were able to get Mom settled into a nursing home and on hospice care.  The following week we went to pick up Dad.

At this point we had nowhere for Dad to go facility-wise.  So I kept him at home for a week and a half.  It was then that I realized just how bad he was.  He couldn’t balance his checkbook, he couldn’t remember names and he was very confused.  But the worst part was him slipping out and walking the road.  This scared us the most.  We didn’t want to risk the possibility of him getting hurt walking the road or even killed by getting hit by a car.  So the search for a memory care facility for him was our next priority.

When I went to see Mom she told me that Dad had divorced her and was seeing a 17 year old girl that had thrown all of mom’s furniture out of the house and spent all of their money.  She also told me that Dad had married this girl and that their pastor had officiated the ceremony. Of course, none of that had happened, but I could not make her believe that so on that day I had to join her in that train of thought and say, yeah Mom, you know I guess maybe dad did leave you, although I didn’t use the word divorce.  But by joining her in her world or train of thought that day kept her much more calm than if I tried to argue with her.

Dad took my cell phone and held it behind his back as if to keep it away from me.  So I just let him have it and watched to see what he was going to do with it.  He took it outside and touched the screen as if he were pressing the button on the key fob to unlock the car door.

I went outside after a few minutes to see why he wanted to get in the car.  He was looking for Mom’s purse. I had the car key because he isn’t supposed to be driving.  I opened the car and let him look for a while.  After a bit I told him that I thought my younger brother had Mom’s purse last.  He stood up looked at me and said you know what I think you are right. He let me lock the car and he went back inside satisfied.

He stayed with me for a week and a half before we were able to get him in a facility.  It felt like four weeks.  I had to constantly try to redirect him.  I was also having to hide the car keys when I went to bed at night.  That means I hid them in a different place each night.

quote 2Being the caregiver for a dementia loved one is very hard.  They ask the same things over and over not remembering that they have already asked and you have already answered.  It is very important that you take the time to take care of yourself.  Have another family member give you a day off or a few days off.  Check your area for possible respite care centers that give the caregiver a week off while they care for your love one.

In my situation, my mom has gone down so fast that she needs nursing home care or 24-hour care as well as hospice.  My dad can’t stay home alone by himself because he could get out and walk the road so there’s a safety issue involved.  For my family it worked out better to have both of them in a facility geared to their needs instead of having them in a facility together.

 

Dementia Diagnosis

This month, we are introducing our new bloggers not only with their posts, but with a video!

Meet Lisa:

By Lisa Baker

What is the first thing you think when you hear dementia? Well, for me and my family this very word has put our lives in a tailspin.

First, my Mom was diagnosed with dementia in May.  From the day she got her diagnosis she went downhill so fast.  She couldn’t walk without a walker.  She had to wear adult diapers or pull ups.  She blamed me for so many things:  I took all of her money and spent it.  I messed up the checkbook.  I was trying to kill her.  That’s just a few things I had done, according to her.

Slowly we began to realize the very best she was going to be was at that moment.  For the only guarantee was she would get worse not better.  So we began the whirlwind of trying to get used to our new normal that was changing daily.

mom and dadIn June, my Dad also was diagnosed with dementia.  So now we multiply all the above by two.  If we thought things were tough before you could only imagine how they were now.

So…….how do you even begin to get through the initial shock?  I think one of the most important and valuable things my parents did for us was to already have their wills done.  And with them their medical power of attorney and financial power of attorney.

So many people think that they will do their will later, sometime in the future.  You need to do it while you are of sound mind.  After a diagnosis of dementia isn’t the best time to do this.  Talk with your loved ones so you know what they want.  Yes, my parents have all that in place and still it can be hard.

We still had to get a letter from their doctors stating they could no longer handle their financial affairs.  Most doctors will want to see your loved one before they will write such a letter.

Talk with your loved one now about what they want and don’t want for medical care.  That also means the hard questions such as, “Do you want all life saving measures such as feeding tubes if your quality of life will be compromised? Do you want to be resuscitated if you stop breathing?”

Know about their medical insurance as well as life insurance.  Where you can find the policies and who can you ask if you have questions.

The next thing to try to get used to is things constantly changing more for the worse then for the better.  Remember there is no cure and no guarantees other than they will get worse.

So today is the best it will be and tomorrow won’t be as good as today was.

If and when you need to consider a facility for your loved one do all the research you can.  There are memory care centers and nursing homes as well as assisted living centers.

At this time, we have my Mom in a nursing home facility and on hospice care.  My Dad is in a memory care facility.  They are at separate places that are best for their needs at this time.  We would have loved to keep them together however Mom’s care is a lot more involved at this point then Dad’s.

Cost is also a huge factor in finding a facility for your love one.  I’m talking thousands of dollars.  Yes, there are places that take insurance but there are also private pay places as well.  Ask to take a tour of any facility before placing your loved one.

You also learn quickly to join your loved one in the frame of mind they are at in this moment.  There is no way to change their mind and no need to argue, you won’t win.  You will learn to redirect them, but you won’t be able to change their mind.

During one of my Mom’s hospital stays she insisted that Dad had divorced her and had remarried a 17-year-old girl.  This was during the time that Dad got his diagnosis and therefore had not been able to go see her very much.  I did start out trying to get her to understand only to realize nothing I said was going to change her mind.  Looking back, I have to laugh a bit about it.  She was very serious.

dementia tips

In Memory Of My Father, Richard Baldauf

By: Mary Pat Baldauf

On Sunday, December 11, my father, Richard Baldauf, lost his brave struggle with dementia with Lewy bodies (DLB). I am feeling so many emotions, but instead of focusing on me, I want to share an amazing story of God’s grace that I experienced firsthand

Mary Pat Baldauf

Five years ago, my father was diagnosed with dementia with Lewy bodies (DLB), a form of dementia that shares characteristics with both Alzheimer’s and Parkinson’s diseases.  From day one, I felt helpless because Dad could no longer enjoy the many things we used to do together like talk politics, do puzzles or work around the house. Up until this summer, I felt bad that I couldn’t do more for him, but that all changed when I found Gizmo, a rescue Pomeranian pup who changed Dad’s last six months in a way that I couldn’t.

Dad never really had indoor pets, but for years had a loving Chow mix named Lucy. As Dad’s illness progressed, Lucy came in during the day to keep Dad company. Unfortunately, Lucy was diagnosed with cancer in November of last year and died at home the following February. My mother, sister and I gave Dad some time to grieve, but we were anxious to get Dad a new canine companion, perhaps even a little lap dog. We made several attempts and even brought one home for a trial visit, but Dad was adamant that he didn’t want another dog.

As Dad’s somewhat rebellious daughter, I wasn’t going to take Dad’s refusals lying down. My sister and I kept our eyes open and even checked local rescue websites, but we hadn’t been able to find the right dog. Then one fateful Saturday, I was shopping at Harbison and stopped by PetsMart on a whim. There were several rescue groups on site, but I only saw puppies and larger dogs. I sighed in disappointment and decided to try again later.

On my way out, I spotted one last rescue group, Fairfield County Animal Adoption Center. At first glance, I saw no small dogs, but a volunteer told me they did have a rescue Pomeranian named Gizmo, but he was outside being walked. As we waited for his return, she told me that Gizmo’s first home was with a wheelchair bound man and that the dog would sit in his lap all day. That was my first tinge of hope. Dad used a walker, and any dog who rode in a wheelchair probably wouldn’t mind a walker. She went on to explain that when Gizmo’s owner passed away, the dog went to an abusive home where he was beaten with canes and brooms and generally neglected.

At that time, in walked a volunteer with a precious little bundle of fur that was Gizmo. I may’ve been on the fence before, but I was immediately determined to adopt Gizmo for Dad. I tried to call my sister to get a second opinion, but couldn’t reach her; I just took a giant leap of faith and adopted Gizmo. Janice screened me well and asked a lot of questions, but thankfully was as convinced as I that this was meant to be.

Fast forward to Mom and Dad’s house, where I walked in with Gizmo.  Dad had no more made that funny face and started to say no when Gizmo jumped in his lap; the rest is history. Within the hour, he was telling us, “This is my dog!” And indeed, Gizmo was Dad’s dog. He took to Dad immediately, and in the coming days, their bond grew exponentially. Quite simply, Gizmo gave Dad unconditional love and friendship that truly enhanced his quality of life in his final days.

These are just a few of the examples of how amazing Gizmo was for my dad:

  • Gizmo stayed by Dad’s side practically 24 hours a day, seven days a week. During the day, he sat on Dad’s lap in the easy chair in the living room, and at night, slept right beside him.

    My dad with his faithful companion, Gizmo

  • Gizmo made it easier for Dad to have guests.  With Gizmo, he always had something to talk about.  He could easily make conversation about the dog, while remembering current events or previous visits were more difficult for him.
  • In addition to the love he provided, Gizmo also became Dad’s smallest care giver.  On many occasions, Gizmo sounded the alert that help was needed. Once, when Dad was struggling to get out of the bed while Mom was making breakfast, Gizmo ran into the kitchen and barked until Mom figured out what he was trying to tell her.
  • Gizmo was loyal to Dad to the end. Gizmo camped out on Dad’s bed, and even when Dad could no longer speak, he nearly always had a hand on Gizmo. Even after Dad passed, we couldn’t pry Gizmo from Dad’s side, so we let him stay and say his goodbyes.

These days, Gizmo is still supporting Dad – this time by pouring out his love on my mother. He’s already sleeping with her, and with Gizmo there, Mom is never alone. For my sister and I, visiting Gizmo is like having a little of Dad right there with us.

In the opening, I mistakenly suggested that I found Gizmo. That’s not quite right. I was just God’s conduit, a way for Him to deliver the gift of Gizmo to my father. There are a lot of things I don’t understand about God, but this I know for sure: God bundled up his grace and love in that sweet, furry package especially for Dad.  And for that, I am most thankful.