Gratitude with a heavy heart!

Hello to everyone and Merry Christmas.  My heart is very heavy right now but there is still much gratitude!  Sometimes it stinks to feel!

My gratitude extends to all my family and friends this Christmas Eve.  I am so grateful to all of you in my life.  I am grateful for the opportunity to take care of Mom and be here for her.  We have made this Christmas special with lots of lights and goodies.  Only the Lord knows if this will be her last Christmas.

My heart is heavy also, that she is becoming more distant.  She talks so much less than she did.  She won't answer most of the time when you ask a question or she will repeat what you say. I knew early on that this was a part of her disease, but until it starts happening you just don't think about it. 

On a note of Gratitude, last night when I tucked Mom into bed, (yes I tuck her into bed), she said, "I love you".  Now that's really special because usually I say, "I love you", and then she tells me.  We have our little ritual each evening.  I began to get teary eyed and told her thank you.  That's what makes this all worth while.

Will catch up more after Christmas.  Much to do:  Parties, midnight mass for Grandma, and then off to Ocala to see family tomorrow.

See gratitude in everything, it makes life a little easier!  Until next time, be happy and hang tight!

Rehab-Another lesson in Humility!

Okay, we have arrived at the Rehab after our 10 days in the hospital!
I picked this rehab because I knew it didn't stink, it was very clean, and also had high marks on its therapy programs. On Friday, the social worker said she wanted to meet with me and gather all the information she needed. As we were talking, she said that we will have a case meeting on Mom's progress in about 3 weeks. I just looked at her and said 3 weeks (Medicare pays for 21 days-get the picture)?  I promptly let her know that I did not expect Mom to be in there more than a week. If anyone could gauge Mom's progress it would be me. So, I explained to the social worker that I would let her know when Mom was ready to come home. I met with the physical therapist every day. The first day Mom's balance was bad (between being weak, in pain, eating liquids, and not walking much). Each day she got stronger and more balanced.  Saturday afternoon, Larry and I got reprimanded by the nurse for taking Mom for a walk (I just can't stay out of trouble).  We did it because on Saturday and Sunday there would be no physical therapy as Mom was a new patient and all the scheduling was not done yet.  We figured keeping her going was the best medicine.  Obviously, the staff did not feel the same way! 

So, Monday rolls around and physical therapy is going well.  Speech Therapy, on the other hand, not so much.  Mom was not on any special diet at the hospital or the rehab but I could not get anyone to understand that she is much better on solids than liquids.  I had to be at the rehab for all of her meals to make sure she didn't choke to death.  I had spoke to the nurse's at the rehab and explained Mom's swallowing issues and could we please give her real food, but they said I had to speak to the speech therapist.   After being persistent, I finally caught up with the speech therapist who had evaluated Mom. 

Now, remember I have had Mom in outpatient speech therapy for the last 4 months and we have already had a swallowing test done (her swallowing devices are fine) etc....etc...The rehab speech therapist's thoughts were that if Mom choked so easily on liquids, she would definitely not be able to handle solids.  I gave him all the reasons why he was wrong and then asked him if we could go see Mom together with different types of foods to try.  I explained to him on the way to Mom's room about her particular form of dementia FTD, because of the swallowing issue and he had the idea that Mom was in another world because she didn't talk much to him.  He did not understand at first that her swallowing problems were due to her brain not acting on the art of swallowing right away.  Mom's brain needs time to process things, and with swallowing it needs some ques to get the motion going. Before we played with the foods, I asked Mom some questions to prove my point about her intellect and speech.  Next, was food therapy.  So the therapist started with liquids, than progressed to jello, than a granola bar, and finally a banana.  With liquids Mom has to be told to swallow sometimes unless its with a straw than that activates her brain to swallow.  The jello, granola bar, and banana got chewed up and swallowed like a charm.  The speech therapist was a little surprised.  He admitted to me that he did get an education on FTD and he has never had a patient like Mom.  So by Wednesday Mom got to progress to pureed foods (yippee). 

On Friday, the physical therapist and I walked with Mom up curbs, down long hallways, and then getting her in and out of chairs, bed, etc..She was pretty much back to normal.  She still had tummy pain and was still recuperating from the gallbladder removal but she was steady on her feet and ready to come home.  So we made the great escape on Saturday just in time for dinner at the house;  Mom's favorite and real food-pork chops!!!!!

Mom is doing very well and pretty much back to where she was before this all happened.  Mom's disease is progressive.  When something else jumps in like surgery, there is a good chance of the person not coming back to the place they were before the event.  The biggest difference is she is a little quieter.  She's back in Adult Daycare, speech therapy (outpatient), riding in the 68 Stang, smiling, and bopping around. 

These adventures at the hospital and rehab have taught me a couple of lessons:  Be prepared to explain to every medical professional about Mom's disease, so they don't treat her like she's indifferent and/or stupid.  Make sure Mom is taken care of as these places are understaffed and don't get around enough to look in on the patients.  Be gentle but assertive to them to meet your needs.  Let them know when you appreciate them, because some of them are great medical professionals.  And last but not least, I do feel for those of you who are unable to be close enough to know that your loved one is being taken care of and not overstaying their welcome because they have no one to speak up for them or they have wonderful insurance benefits!!!!

As always-Be Happy and Hang Tight!

Hospital/Rehab-a lesson in assertiveness and patience!!!!

So are you with me?  I'm not sure I am.  I have the permanent cast on now for 3 days and then comes Mom's problems.  Its Friday night and Mom is having stomach problems (will not go into detail).  Saturday rolls around and Mom is still having stomach problems but is now pointing to her stomach and letting me know it hurts.  Sunday rolls around and things are getting worse not better.  Its very hard to gauge a person's pain when they cannot come right out and tell you.  By knowing her facial expressions and normal routines (mentally and physically), I can usually know something is going on.  So I call the Dr's. office. I explain all the symptoms and the Dr. says I should take her to the emergency room to get checked out as we were both concerned about dehydration.

We get to the emergency room and I already know they are going to keep her.  She was somewhat dehydrated and her stomach still hurt.  They did an ultrasound that night which showed nothing.  On Monday, it was decided that a colonoscopy would be done because of one of the symptoms she was having.  The colonoscopy turned out fine-spastic colon and non- cancerous polyp-Yes!  Dr. says Mom may very well go home Tuesday morning.  Tuesday morning comes around and Dr. calls me at 7am and says Mom is vomiting so she won't be going home.  We had the same Dr. who did the colonoscopy do the endoscopy (I asked for him).  Unfortunately, we could not get it done until Wednesday.  Test results came back with an inflamed esophagus and an ulcer-Yes we have gotten to the problem!  So, we get to escape on Thursday with new medications and diet restrictions-not so fast! 

Thursday morning rolls around and Doc calls me again around 7am (she called me every morning that Mom was in the Hospital-Thanks Doc with gratitude), says Mom's liver count is extremely high and that she won't be coming home.  At this point I am tired, easily agitated, running out of patience, and wanting Mom home.  Now, poor Mom, the whole time all this is going on they won't give her anything but liquids-Mom likes solid food! She chokes easily and holds liquids in her mouth, but only liquids.  I tried to tell them to let her have regular food-to no avail! They did at least have her up and walking around with a physical therapist every morning, but she was getting weak eating liquids and laying around.  So the Dr's. put their expertise together and decided we are going to get a CT Scan of Mom's abdomen.  This happened on Friday.  We get the results very late on Friday and Dr. calls me that night after conferring with the other Dr. that Mom has gallstones.  Now, Mom has been prone to kidney stones throughout her lifetime and both Dr's. knew this and the emergency room did too.  So looking back, we could have discovered this on Sunday night in the emergency room had they did a CT instead of an ultrasound.  As I look back on all of this, I try to be grateful, because now I do know a few more items that need attention on Mom's behalf. 

So, what's next?  Surgery.  I told Mom she just wanted matching scars!  We could not get surgery scheduled until Tuesday.  So there was poor Mom drinking her food and bored as heck!  They still would not give her solid food!  The surgeon came out and talked with me about the gallbladder removal.  He said he removed a stone the size of a dime with her gallbladder, so Mom got a little bigger hole in her.  She was pretty much out of it until Wednesday afternoon.  Mom's Dr. asked me if I wanted to take her home or have her go into a rehab. center for a while.  Mom was weak and in pain and I was in a cast.  I told Doc rehab.  I needed Mom to get her strength and balance back.  I figured a few days and she would be home.  I asked for a specific rehab.  Mom got transferred on Thursday to the rehab.

I learned through this experience that I have many concerns, number one being that most medical professionals do not know what FTD is. They think Alzheimer's.  They automatically assume that Mom does not understand what is going on because she does not talk much or they are too busy to wait for the answer. What scares me is Mom is so quiet that she will not let staff know what her needs are. I decided after this ordeal that if I ever have to place Mom in a facility that she will go down quickly. She would be the quiet one that never gets out of the room, but would be the staff's favorite because she does not complain and smiles all the time! 

So until next time and the rehab story-Be Happy and Hang Tight!

We are back!!!

I really missed my blog!  The last three months have been full of laughter, tears of joy and sorrow, and quite the education.  This blog will be a little of a catch up and not my typical humor.  But the humor is coming back-stay tuned!

Back in June, I had some female surgery which hurt for awhile number one, and number two affected my care giving.  Could you imagine no lifting for 6 weeks or driving for 2 weeks as a caregiver and homemaker?  Well, me being the good patient I am, I did not follow direction from the Doc, but did things as I felt I could handle them.  The first couple of weeks were the roughest by far, having to depend on the boys and Grandma.  Grandma was great with letting me rest at the beginning and doing the laundry at almost 94-God Bless you Grandma!  Husband and son did the best they could with work, college, lawn, cooking, and housekeeping duties.  My biggest complaint was it didn't get done in my time!  Thank you boys!  So other than feeling incompetent, isolated (my fault), and restricted, it all worked out.  Everyone is still alive and breathing!

So then in July, I decide my medical deductible has been met and I was also having problems with my left hand for the past few months.  I went and saw an orthopedic hand specialist and find out I have osteoarthritis!  I look at him and say "I am a little young for this, am I not?"  And he said, "No, its genetics."  Yippee!!!  So I received my first cortisone shot, which I yelped like a puppy and hoped the shot would do the trick!  About 3 weeks later my thumb was worse than ever.   Back to the Dr. I went.  I knew what the outcome was before I even got there-surgery.  So on a Wednesday, I went under the knife again for a lapraplasty on my thumb and oh while we were at it, a carpel tunnel release! 

I really think the hand surgery was much more painful than the female surgery.  I am right handed and the surgery was on the left hand, but you have no idea how much you use both hands.  I was in a temporary cast for 1 1/2 weeks until the stitches could be removed and then in a hard cast for 3 more weeks.  Now, taking care of Mom was almost impossible, I could hardly take care of me.  I have home health aides and Mom goes to adult daycare on the weekdays but I feel I take the best care of Mom as far as keeping her clean.  Mom and the one-armed bandit made it through with several trials and tribulations! 

Just after my hand surgery, within a week, Mom ended up in the Hospital!  To be continued-until then Be Happy and Hang Tight!!!!

Keep coming back as we will be on a blog streak to play catch up!

Overly Affectionate

Hi All!

I know this can be a problem for a lot of caregivers.  It can be difficult to handle a man with overly affectionate intentions, especially for a female caregiver.  Luckily for me, that's not the case.  I have smiley, over affectionate Mom.  She smiles, hugs, and asks for kisses!

Picking up Mom the other day from Adult Daycare I discovered Mom was a little overly affectionate.  It was disclosed to me that Mom wanted to kiss and hug everyone (men and women alike).  Personally, I don't find this a problem.  Hitting or affectionate (hmm, let me think). 

Okay, at the daycare it can be a problem, especially when redirecting her was not working.  Some other daycare guests do not like to be hugged, kissed, etc...It was suggested to me to ask her Dr. about any drugs that would help to keep her a little more poised.  I resented the fact of even thinking of putting Mom on anymore drugs.  I would much rather have an affectionate, smiling Mom who is not walking around like a zombie!  Why is putting someone on more drugs the answer for every problem?  I told the daycare I would not put Mom on anymore drugs but that I would contact her dementia Dr. to see what could be done and that I would have a talk with Mom.

Mom and I had our talk about hugging, kissing, touching, hitting, etc...The rules are the rules and she must abide by them.  Our discussion went well and we have been overly affectionate clear for about a week and a half.  I did also speak with Mom's Dr..  She informed me that for women their is really no medication to help with inappropriate sexual behavior.  Men are a different story:  they can give them female hormones to offset the testosterone. 

I personally don't believe that hugging and kissing are inappropriate sexual behavior, I like to think of it as being affectionate.  I will admit I am overly protective of Mom.  My thinking and watching Mom on a daily basis leads me to believe that because her speech is getting more limited, being affectionate is her way of letting you know she cares and appreciates you.  She is just lovable!

So the moral for Mom is:  redirect, redirect, and redirect the behavior when being affectionate gets overused. 

Be happy and hang tight!

Bright Lights and lots of smiles!

The 4rth of July in Florida is always unpredictable.  I had not been out of the house for almost two weeks and was going nuts (that's putting it mildly).  So I had these grandiose plans of going to Clearwater or St. Pete Beach to see some of the best light shows over the water.  Well, with Florida weather those plans changed and in hindsight, for the best.  The little City of Port Richey (population around 3.5K) had a fireworks show at a waterfront park.  After watching the radar all afternoon we decided to take a chance and go. 

It was Mom, my husband, and I.  As we got within two miles of the park, traffic got rough, the clouds were talking and shooting light!  We decided to continue on.  We got by the park entrance and the police officer said they had 3 more spots in the park for parking.  I was just going to ask where we could park as Mom could not walk for miles as others were doing.  We were the second to last car to get parking in the park.  Talk about being watched over! 

Larry gathered our chairs and soda and I gathered Mom.  We found a beautiful spot on a hill to set up camp. There was a beautiful breeze off the water and the clouds were quieting down.

From the moment we left the car, Mom was like a little kid looking at all the people and smiling all the while.  After sitting for a bit, Mom started getting ants in her pants and got up to walk.  Larry said let her walk a bit and he would follow her from a distance.  As she walked past dozens of people, she stopped by a man in a scooter and just stood there and smiled at him.  I could see he was talking to her but all she did was smile back at him.  Larry caught up with her and walked a bit further.  On the way back to camp, Mom had to stop and smile at the man on the scooter one more time. 

I watched Mom on and off throughout the fireworks show.  It was like watching a child, fascinated with the lights and sounds of our Great America.  Her eyes lit up and every so often she would grab and hold my hand.  I am so glad we ventured out to see the  little town show.  God had everything fall into place for us.  When we got home, I thought what if this is the last July 4rth with my Mom?  If it is, it was perfect!!!

Be happy and hang tight!

Doctors, Doctors Everywhere!

Hi all.  Yes, we still live and breathe!  Finished with the Doctor's for now with Mom except the speech therapy once a week.  It is going well.  It does not make Mom talk anymore but helps with her understanding, pronunciation, and communication in general.  We also practice at home a couple of times a week by finishing phrases, describing pictures, etc... 

We saw Mom's FTD Dr. last week and went over the brain scan and we all met with the Dr.  Its kinda cool because the Dr. takes Mom in by herself and runs her tests and scopes how Mom's overall happiness level is and then invites the rest of the family in without Mom to compare notes and answer questions.  So the prognosis is:  Mom is happy and content,  her orientation skills are doing well, and she is at a moderate stage of her disease if you figure in all aspects of her brain (some areas are good/others are not).  It was very interesting seeing the brain scan.  There are actually pieces of her frontal lobe missing where there was once brain mass.  The dark holes have gotten larger from the scan back in 2009.  No signs at all of Alzheimer's.  It is eerie to see just blank spots.

Anyway, where have I been.  I have been recuperating from major surgery from 3 weeks ago.  Feel great, but still not allowed to do anything for another week.  For the first two weeks, it was hard.  I was not suppose to do anything at all, not even drive.  Depending on others for my own needs is hard enough to swallow but also having to depend on others fully for Mom's care was even worse.  It seems no one can live up to my expectations as to how my Mom should be taken care of.  I can definitely feel for whatever nursing facility my Mom may end up at, because I am very demanding in the respect I want my Mom clean at all times.  And yes, I did things I should not have done but Mom's cleanliness is extremely important to me. 

So what did I learn from the experience?  Mom's cleanliness and needs are more important to me than they are to  Mom.  I learned to let go and let God /others do what I could not.  My husband and son stepped up to the plate without striking out.  My grandmother (Mom's Mom) gave up her fun time and bed to come help out with what she could.  I am grateful!

So there's where we are-how about you?  Be happy and hang tight!

Too Long!!!

Okay, I'll admit it-I have denied my blog.  When you are care giving time flies when you don't want it to and drags when you wish it would fly. 

We have been to more Dr's in the last couple of weeks than I care to count!  After all is said and done, Mom is doing well.  She had a brain scan done and there has been some deterioration but nothing out of the ordinary (I should have had them check mine too to make sure something is still there!).  Regular check up went great.  We went to a speech therapist to work on her talking and also had a swallowing test.  The swallowing test just shows that her brain takes a little time to tell her to swallow and everything else is fine.  We have now started using a straw for liquids and she does swallow quicker.  We had our first speech therapy session yesterday and it went great!  Mom likes the therapist and she was talking up a storm.  So Kelly will be a part of our weekly schedule for awhile.

Okay you all know by now that I love humor-it keeps me sane.  Mom's two new words in the past couple of weeks have been:  Key Lime Pee (Yum) and take your pick:  Caca Sauce or Cock Sauce (shrimp anyone?).

Till next time Be happy and hang tight!

Happy Mother's Day!

Just a quick writing today.  I am extremely grateful to have the opportunity to watch over Mom.  Yes, it is a lot of work!  Its draining emotionally, financially, and socially.  Again, I would not trade it for the world!  Its very sad to see someone slip away, but with Mom's particular dementia she is still alert to what's going on.  She may not be able to express it with the right words but she's here with us.  She is just smiling away today as I greeted her this morning with my regular Good Morning but than added Happy Mother's Day. 

We are going to go get Mom's Mom (yes that's right, 93 year old Grandma) and bring her over (yes she still lives on her own), and have a southern barbecue.  Its funny how life works.  Grandma is 93 and pretty much independent and her daughter (Mom) is completely dependent.  I am very fortunate to have these women in my life.

An additional note, thank you Mom number 2 (Carol) for being a wonderful loving part of my life and to my mother-in-law (Beverly) for accepting me as your daughter in law with open arms!  Happy Mother's Day to all and until next time-hang tight!

Another funny!

Hi all!  The adventure continues.  I went to pick Mom up at Adult Daycare yesterday (she has just started attending 5 days a week instead of three), and the nurse asked to speak with me. 

For those who don't know Mom is always smiling and sweet.  You can't help but love her.  At the Adult Daycare, they have many activities and its great socialization for Mom.  Dancing is one of the activities.  They have folks come in for free and sing.  Then the folks who are capable of dancing, just get up and dance.  I bring up the dancing because Mom's favorite dancing partner is Jimmy. 

The nurse proceeds to tell me that Mom whacked Jimmy upside the head earlier in the day (just a tap really).  Then Jimmy was ready to whack Mom back when the Activities Director said, "Don't even think about it Jimmy!"  Mom's not in trouble but they do have to document these things and let the caregiver know. 

So I am asking Mom what prompted her to smack Jimmy?  She just smiles.  I never really got an answer.  My conclusion:  She just felt like doing it! 

So we had the talk.  Mom you can't go around hitting or touching your friends at the Adult Center.  She acknowledged that she would not.  Time will tell!  Till next time-be happy and hang tight!

Choices-we all have them

Hey all.  You know we had choices whether to move Mom in with us or put her in an assisted living. I personally could not accept the assisted living.  I was afraid of strange people not caring for my Mother the way I would.  That fear still exists.

I knew there would be many challenges in caregiving and a lot of learning involved.  I thought I had a clue of what I was getting into!  As time went on, I realized there was much involved.  Time, finances, proper care, privacy issues, grieving for the loss of a loved one, and the list goes on (and the list includes how it has affected all of us in the household). 

Mom really handled all the changes well considering moving, losing her husband, and being in a whole new environment.  The first week of Dad being gone, Mom started making faces (yes funny faces), and as time passed I realized that the faces represent her feelings.  Some are laughter (and yes I make faces back), some are sad, some are pain, some are happy looks (big smiles), some are the I'm puzzled look, and my favorite:  The what's up look!  Mom spoke more the first couple of months she was here.  As the months have passed her language skills are getting more silent.  We are going to try a speech therapist this week (will let you all know how it turns out) for language and swallowing issues. 

Even though the road has had its definite rough spots, I would not trade the time I have had with my Mother and the bonding we have shared.  Some day we may have to make the assisted living decision, but not today. Till next time, hang tight!

Humor day

Hi everyone.  I am going to lighten up today.  Humor is so good for caregiver's (at least for me)!  Mom has been with us since February 2010.  When Dad was still alive he used to tell me how much Mom loved to walk around their condo complex.  She would just take off when he was resting, not paying attention, etc...she would just wander off until he noticed her gone.  He had cancer so it was not a pretty picture.  He was proud too and we could not get him to let us help him with Mom.  He felt that by taking complete care of Mom that it helped him fight the cancer, so he could be around longer.

So that leads into what happened after Mom was with us for about 2 weeks.  My husband works swing shift from about 4pm to 4am.  We had been moving Mom's personals into our house and getting her bedroom ready.  We had the basics here such as:  clothes, meds, bed, dresser, shoes, and personal items.  Mom had tried to wander off a few times here too, but we always busted her before she got too far!

My husband asked me on a Monday morning if I had left one of the suitcases by the trunk of the car in the driveway.  He thought I might have because we had brought things from the condo to our house over the weekend.  I said "I don't think so", but with everything thats going on, its possible.  So he informs me that there was a suitcase on the driveway behind the car and that he brought it into the garage.  I went out to bring the bulging suitcase in (Mom's red suitcase) and opened it up.  Mom was in the kitchen watching my every move, not saying a word.  When I opened the suitcase it was completely filled with shoes (Amelda Marcus, that's Mom) and hangers with the clothes on them.  I looked at Mom and said how did the suitcase get out on the driveway by the car?  Her reponse:  I took it out there and tried to open the trunk and couldn't, so I came back in and went to bed.

Now picture this:  a 5'3" woman in her night gown, in the middle of the night, lugging a 70lb suitcase to the driveway!  I asked where were you going?  She said "Back to the condo to live alone". 

So needless to say we had to take measures to prevent this from happening again.  Safety is a big issue with a dementia patient.  Till next time-hang tight!

Trying to keep up

Well its Wednesday, more like 5 days since the first blog rather than just a couple.  A little more on Moms disease.  Frontal Lobe dementia (known as FTD from this point forward) affects the executive part of the brain (the frontal lobe).  Its main characteristics are language, organization, hygiene, and being uninhibited.  Throughout Mom's life she was always in an administrative capacity in her career.  When it came to finances, scheduling, history, politics, and always looking her best, she had it all.

FTD as it progress's (towards the end) looks a lot like Alzheimer's as the whole brain continues deteriorating.  I mention all this, so as I continue with this blog, you will have a better understanding of this disease.

Looking back at the progress of this disease it was very subtle at first.  Time to get the family fed.  Next blog will be much lighter and fun (there are some good times to caregiving also).  Humor is key to caregiving!!!!!!!

The start of something new

This is a new adventure!  I hope by blogging about my adventures in caregiving that not only will others gain hope and courage, but I too, continue to be strong.

My name is Jackie.  My mother Alberta has Frontal Lobe Dementia (a very rare dementia that only strikes about 12% of all dementia patients).  This disease (yes it is a disease), starts out as young as the mid 40's. There are no medications, no cure, and getting proper diagnosis takes persistence.  Mom was diagnosed with it in July of 2009.  She was originally diagnosed in 2008 with Alzheimer's (which was not what she had).  She has been my patient since February of 2010, when we lost my father.  Mom is a young 69 years of age and I am a young caregiver.  Over the past year I have learned much, loved much, bonded much, and laughed much.  I have also grieved, cried, isolated, and fought back.

So there you have it.  I hope to blog at least every other day.  This blog will be filled with love, humor, and above all gratitude.  This is one of my outlets and I hope you will follow along on my journey!