Posts Tagged ‘dementia’

Hospice offers a helping hand: Saying Goodbye to Mom

Mom's art show at Sunrise Assisted Living

Mom's art show at Sunrise Assisted Living

My mother has been in Hospice since the first of December.  She suffers from Dementia which is a brain disease.  I just got off the phone with a relative, and he couldn’t understand why Dementia is causing her decline since is seems like a simple brain or memory loss issue.  It’s not though.  Since she was diagnosed, she has slowly been declining in all areas of her life.

I remember taking her to Fitness 19 to work with a trainer last year, and she told me that mom’s muscles were no longer firing…and she just could not seem to get the rhythm of the treadmill together.

Last summer, she was still taking long walks with me and working in the garden and even playing pool with my husband when she began to experience a serious decline.  It may have been the change in her medications after her last visit to the neurologist…I have racked my brain over this.  It doesn’t matter now though, because I and everyone else did our best. 

In most cases, caregivers are giving 100% and it’s just part of the process and there is nothing we can do about it when the decline begins.  My mom went into the hospital in August, came home was back in a month later, came home, and them moved to the dementia section of Sunrise Assisted Living.

If there is anything I can recommend to someone reading this post, it is to go to the higher level of care earlier in the game. My mother stayed in assisted living for 30 days longer than she should have and had several falls.  Once she moved to the higher level of care, she was so well cared for, that she thrived at first.  But in the end, there was nothing anyone could do.  No heroics could save her.  She was on her path to transition to the other side, and I could not stop it.

Maybe she just wants to go visit everyone.  All her loved ones have already left this world.  Tonight, as I sat next to her side, she was unconscious for the first time.  I told her I loved her, I said The Lord’s Prayer for her and I told her it was okay to look for her loved ones.

I hope it’s wonderful on the other side.  I hope she is happy when she gets there.

Hospice has made this process so much easier. If you are not familiar with Hospice, don’t be afraid when the doctor recommends it.  They are the most caring and loving people.  They have mad this entire experience so peaceful for her and for us.  Feel free to share you experiences with me.  I would love to hear from you.

Caregivers and When to Bring in Hospice?

Thanksgiving with mom

Thanksgiving with mom

What do you do when the doctor recommends calling Hospice for your loved one?  After visiting my mom on Thanksgiving and watching her finish her entire dinner, it was shocking to visit her just a week later to find her on oxygen.  My daughters were in tears as we played a couple hands of rummy with her while I held her cards and played for her.  Just weeks ago, she had been able to play independently…plus she actually beat me at a few hands.  How does this happen so quickly?  I called her doctor, and he recommended that we contact Hospice for a consultation.

I am very familiar with Hospice.  My step-father was diagnosed with lung cancer at 86 in October 2005.  We managed to keep dad healthy and enjoying life (beating all odd, the doctor said) and finally called in Hospice in June.  Hospice was our saving grace until he died on October 24, 2006 on my birthday.  I love Hospice.  I’ll share that story with you one day…now back to mom.

Yesterday, I surprised mom on her birthday.  She is just 76 and suffering from dementia and a series of unexpected falls that have caused this sudden change in health.  She was very excited to see me with her gift and cards in hand.  She was just finishing up with her last therapy session that was related to her hospital stay and subsequent rehab stay at Fox Run.  It gets complicated, doesn’t it?

I have been crying on and off every day and feeling this pit inside my stomach since I realized that my mom really is declining.  I have been asking myself did we do all that we could have, did I choose the right doctors, what chould I have done differently?  It’s funny how we do this to ourselves.  I am sure I am not alone with these types of feelings, right?

When I look into my mom’s eyes now she seems to be telling me all is fine and she is ready to go and be with Dale (my step father), and her mom, dad, bothers, and Aunt Madge.  She smiles all the time and is just happy to be with me and grateful for the moments of time we have together right now.

I am calling Hospice tomorrow as her doctor has recommended.  It seems so final, but I know it’s the right thing to do.  What are your feelings about Hospice?  Thank you for your support right now…and I send my love to all of those who are going through this same process right now.  Feel free to share your thoughts…

Caregiving and Gratitude

Yesterday I visited my mother at Sunrise Assisted Living.  She had just moved over to their Reminiscence – dementia section.  At first I was worried that she would not like it, but after visiting, I found that the homey setting which resembles a very large open kitchen, dinning and living area was perfect for individuals at this level of need.

About six weeks ago, my mom had a short stay in the hospital and than spent three weeks in rehab at Fox Run, an Ericson Facility, my mother spent her days in bed, often in a hospital gown.  Although their nurses and care was excellent, my mom was bored and sleep most of the time.  At Sunrise, she is up and dressed, her hair and nails are done every Thursday.  They even gave her a pedicure.

I visited mom yesterday, and she looked beautiful…she could not get the smile off her face.  She loves her new room and we even played a game of cards.  It’s amazing how lucid she was after my experience last week when she barely recognized me.

Today while I was preparing turkey dinner, my brother ran over to see mom and had a Thanksgiving lunch with her.  I even received a call from her nurse giving me an update on her condition.  She said mom would not be able to travel to our home today, but she was doing much better after the “house call” from the Sunrise physician.

My heart goes out to all these wonderful caregivers.  Thankyou for giving your lives in the service of others so our loved ones can maintain their dignity and quality of life.

Reminiscence

Caregiving Dilemma: dehydration, over medication or what?

As a caregiver to my mom, I am forced with a huge dilemma right now.  A week ago, I went to visit my mom at Sunrises Assisted Living.  She was still in bed at 10 am.  Recently, she has been wanting to sleep.  She was excited to see me when I woke her up, so I helped her with her shower, and then helped her get dressed.  I was shocked to see how much she deteriorated in her abilities to manage on her own and it puzzled me.

Mom and Dad

Mom and Dad

 

How could my mom be experiencing such huge changes in her physcial and mental abilities so quickly and what could I do about it.  I decided to spend a few hours with her to see how she was managing her daily activities.

I took her to the dinning room and asked the chef to prepare scrambled eggs, toast, OJ and coffee.  When it came out, not only was it delicious, but I was thrilled too see my mom devour every last bite.  She had no problem managing her breakfast independently and we had a great time together.

Next, I invited her to play rummy and she was thrilled.  We started playing in the bistro, and soon we had a full table of other players.  Mom played quite well.  The only issue was that I had to remind here when it was her turn.

One week later, last Saturday evening, I stopped over to say goodnight and to my horror, my mother was in here wheel chair, looking off into space with a dazed look.  She did not recognize me, and could not speak or move her legs.  What was going on?  I pulled out one of her photo albums, and began to show her pictures asking her who these people were.  When I showed her a picture of herself, she replied, “Mum-ma”, like a talking doll.  When I asked her to identify her recently deceased husband — my stepfather –she  replied, “Pa-pa”.

I called the attendants in to help my mom to bed…and left in tears.  What was going on?  One thing I noticed is that my mother seemed very dehydrated, so I called the nurse and requested that they monitor her food andn water intake and make sure she is given water regularly with a straw as if she was in a hospital.

I noticed that she even had a problem swallowing the water and pills that night…and I was told that she has lost interest in eating.

What does a daughter do at this point?  What do you do when a loved one is unable or unwilling to feed themselves and begins to refuses food?

Please share your stories and experiences with me for my upcoming book with co-author and Legacy Expert, Meredith Bromfield called, The Designated Daughter:  Caregiving and Legacy Planning.   Thank you.

Who is watching over mom when you’re not there?

My parents: Dale and Rose

My parents: Dale and Rose

Women today are faced with a real dilemma as Caregivers:  How do we manage all our roles: as wife, life partner, mother, business owner or career woman, volunteer and more often as primary caregiver to our parents?  This is known as living in the Sandwich Generation.  I call it being the Designated Daughter.

My Story:  Last Sunday, I went to check up on my mother who resides at a local, very upscale, assisted living facility.  What happened next was scary.  Because of my professional training as a Certified Financial Planner and Certified Senior Advisor and my recent experience helping my step-father during his final year long struggle with lung cancer, I may have been more prepared to notice “red flags” in her care.  I just wonder, however, what would have happened had I not stopped by that night, or had been living out-of-state.  Let me first fill you in. 

What happened two nights before (Friday night):  My mother who suffers from Dementia had been in the hospital just two night prior after complaining about heart pain.  She had been receiving the physical therapy that I had requested after her last hospital visit only 30 days prior.  The facility had given her a nitro glycerine pill which had caused her heart rate to drop dramatically.  The facility called an ambulance and sent her to the hospital.

I was called, and when I arrived at the hospital, I found her disoriented, exhausted, in a weakened condition andin very poor hygiene.  I won’t go into detail, but I was very embarrassed for her, and after her vitals were normal again, I took her back home to the facility, where I made sure that she received a shower.   I had not idea at this time, that she had a low grade urinary tract infection and that she should have stayed at the hospital.

Caregiver Red Flags:   This was still Friday night after bringing my mother back to the facility for a shower and helping her get settled.  I went to the nurses station and requested to see her personal file and medical file.  This is when I found that she was still receiving Vicodent to manage her pain on a daily basis.  The Vicodent had been prescribed about a month ago for the pain related to “old” compression fractions. 

Next, I went out to talk with the employees of the facility to see if they had noticed any changes changes in her health or ability to take care of herself, this is what I was told:

  • She had been more tired than normal
  • Spending a lot of time in bed complaining about pain
  • She also seemed to be “out of it” most of the time

My mother has always been very social and very active.  On July 4th, she had played pool with my husband for a couple of hours, helped me in the kitchen and garden.  In addition, she would play cards with her friends for hours.  I would often join them after dinner and we would play until 10 pm.  I was told that in the last month, she would sit at the card table and not even be able to play the cards in her hand because she was “so high or out of it”.

What they were referring to was the combination of prescriptions she was taking, plust the added dose of Vicodent that she had been prescribed for a urinary tract infection last month.   This also explains why she was getting weaker and weaker.  I noticed that over the last month, she had been riding around in a wheel chair, but I had no idea that Vicodent had been prescribed for long term pain management.

So on Sunday night, after receiving a call from the nurse that my mom was not feelling very well, I decided that I would  stop in to check on her.  To my horror, she seemed to be close to death.  She was lying in bed shaking (she had a high fever from a urinary tract infection)

  • She was dehydrated (I gave her a 12 oz. glass of water with a straw and she sucked it down in one gulp)
  • She could only speak in a whisper and had no idea anything was wrong with her. 
  • She looked as frail as a little bird and I knew she was dying. 

Right then, her caregiver walked in

  • I asked her if my mom was receiving food or water.  She said that the day before, my mother was in so much pain, that she was not really eating or drinking. 
  • The young, pregnant caregiver also said that when she tried to help my mother get to the bathroom, my mother had put her arms around her and lifted her legs like a little monkey to be carried.
  • My monther was also in a diaper because she could not control her bladder.

This is when I walked out into the lobby and asked for an ambulance immediately.  It was now almost 7 pm, Sunday night.  Thank God I had stopped by.

When we arrived to the hospital, she was put on an IV and given antibiotics.  She had a very high fever and a urinary tract infection.  This is when the nurse discussed the dangers of the sepsis infection with me.  The high levels of Vicodent may have been masking the pain she was experiencing from the urinary tract infection.  In addition, she had not been drinking enough fluids because of the drugs causing her to be “high”.  This may have caused the UTI to simply get worse and continue unnoticed.

This story has ended up okay, my mom is now safe and recuperating well at Fox Run in the skilled care section.  Because I am experienced in issues related to caregiving, this is what was going through my mind when she first arrived to the hospital on Sunday:

  • my mother needed a three day hospital stay to qualify for Medicare to cover rehab/skilled care for up to 100 days.  
  • She was very week and needed to build her strength and get back to her prior level of strength, but there was no exercise equipment at her current facility and this may have  attributed to her declining health.
  • I better get busy and figure out where I wanted her to live when she left the hospital, because although I loved the social aspect of her current facility, they may not have  a proper protocol when someone’s health is on the decline.
  • I contacted Fox Run, an Erickson facility that had a new skilled care/rehab center and also offered 5 levels of custodial care and I wanted to make sure she could go there, even though the hospital care manager would request 3 different rehab facilities
  • I would need to check my mother’s assets because Fox Run requires residents of the Assisted Living Facility to come up with a $99,000 cash deposit and then go through financial underwriting to see if she qualified.
  • Also, my mother had a long term care policy that paid $150/day benefit for a skilled care facility.  Currently she was only receiving 60% of the benefit since her current facility was classified “assisted living”.

There are so many decisions a caregiver is required to make when dealing with a loved one.  I just hope by sharing this information, I will be able to help others “be prepared for that call in the night”.  Currently, I am working with the management at the assisted living facility where my mother is living to help them see what went wrong so it won’t happen to another resident.  I honestly have loved her current facility…they have been wonderful and this is her home. The problem is that by simply missing a few red flags, a resident’s health can change very quickly.  Also, I needed to be contacted more frequently with important information about her wellbeing. 

Be sure to download your free copy of, “Your Caregiver’s Manual” right here on this website.  It will take you step by step how to get organized financially when helping a loved one.  If you would like a consultation about your own personal situation, please feel free to email me at katana@designateddaughter.com   

I am interested in your stories.  In fact, I am currently writing my new book, The Designated Daughter:  How to Be Prepared for that Call in the Night and interested in your challenges, and success stories of being a caregiver.  I would love to hear from you on this blog, so please leave a reply. Thank you!

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