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.

Sunsets

By Lisa Baker

Hi everyone.

If you read my last blog post, you know that my Mom passed away within a few days after I wrote it.  She has been gone over a week now. We miss her so much, but we know she is now whole and without pain.  Most importantly, she now has no dementia.

Funerals are not cheap.  I’m sure most of you probably already know this or have had experience with this.  We knew this.

Keep in mind that you most likely will be making these arrangements at a time when you are already very emotional.  I suggest that you don’t go alone.  Take a few trusted family members or close friends with you because they will think of things to ask about that you won’t.

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With every item, ask about the cost and if there is possibly a less costly alternative. The funeral home staff won’t mind you asking lots of questions.  That is what they are there for.

We could have gone cheaper on Mom’s arrangements, but we also could have gone a much more costly route too.  I think we are all very happy with what we picked out for her, and we feel that we went about middle of the road cost-wise.  Her insurance will cover over half of the cost leaving a couple thousand dollars for us to pay.  I would encourage people to check into making your arrangements ahead of time.

Yes, I’m changing the subject a bit, but last night Dad got very aggressive and angry.  He was turning over furniture and yelling.  Staff sent him to the ER after talking with his doctor.  They were checking for a possible UTI or other infection.  I haven’t gotten a report yet.

We decided not to tell Dad about Mom.  I know……I know, many of you will think that is just wrong.  He is far enough along in his dementia that we feel it will only confuse him to tell him.  We also asked staff at his facility what they thought about us not telling him, and they also felt that it was the best decision.  It’s sad.

I’ve got to tell you that for several weeks, Dad has not so much as asked about Mom, but Tuesday after she has passed, he told a staff member that Mom was sitting in the recliner in his room.  Some staff feel that maybe she came to tell him goodbye.  Some think that she may be visiting him and may possibly lead him home with her soon.  I guess only time will tell.

Mom loved “Japanese Cherry Blossom” scented items from Bath and Body Works.  She wore the scent often.  I am living in Mom and Dad’s house now, and there isn’t anything with that scent left in the house.  However, I have smelled that very scent in the house the day after Mom’s service and have smelled it a few times over the last several days.  You may call me crazy if you wish and may even not believe me.  That’s OK, but I know what I smell.  It’s as if she is passing through for a visit or maybe just checking on me. I think it’s a comforting thought and feeling.

I’m cutting my post a little short this time.  I’m still busy writing thank you notes to family and friends that have sent flowers and food during this time.  I’ll be back soon on a regular basis.

Until then, make memories, hug your loved ones, and tell them how you feel.  Have no regrets.  None of us are promised tomorrow.

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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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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!