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Devastating Loss

Dear Readers,

With great sadness I want you to know that my husband died March 19 of severe spinal cord injuries sustained from a fall on March 5.

Jack was 76 years old and had weathered three strokes over the past ten years along with a knee replacement and gall bladder surgery with complications.  In spite of his fragile condition we were able to enjoy a number of trips.  A former physicist and mechanical engineer, his intellectual curiosity eventually focused on ancient history, specifically a system of ancient writing found worldwide, coined by him as Earth Mother Sacred Language.  His passion for EMSL symbols took us on several wonderful trips to great museums in Europe, Mexico, and Canada.  Meticulously organized, he amassed an extensive collection of research and insights that epigraphers who follow in years to come may build from.

Now, to tell you what happened on March 5.  The day was a Saturday and it had been rather full.  We were preparing to meet good friends for dinner across town that evening, and I wanted to make the trip count by getting a birthday gift certificate for our younger son.

My husband was so happy about being recently certified to participate in a health club a short distance from our home.  He had been with a trainer earlier in the week and we had also gone midweek to participate.  Eager to build a bit more strength he wanted to make it a third time for the week.

So around 4:15 in the afternoon we drove to the center.  (I had been doing all the driving for us for quite some time.)  This day we needed to meet our friends for 6:30 and I was not quite ready for the evening.  So Jack said, “Just drop me off and then pick me up.”  That at the time sounded reasonable to me.  So I did.  As he left the car I said, “Don’t take any chances.”

As I was leaving the house to pick him up, a call came from the center that my husband had fallen and was being taken to the nearby emergency room of the hospital.

He had had other falls over the years, so I didn’t feel unusually anxious, thinking he might probably need a few stitches.  But this was way different.  At the hospital he told me he had done his usual trips around the track, then the four easy machines on the main floor.  Lastly, he told me he got on the treadmill and that was it.  He told me, “I’m so disgusted.”

Those were really the last words he was able to utter, for a respirator was placed in his throat for extensive MRIs then surgery later that evening.   The surgery according to doctors was successful, but what followed was paralysis of his limbs and eventually his diaphragm.

I stayed with him in his room, doing the best I could to make him comfortable.  Doctors told us he would never be able to walk again.  But he could have a tracheostomy and work toward being weaned from it gradually.  He could choose Hospice or opt to have the trach put in.  He chose to live, and I was encouraged.

But complications ensued during the second week further weakening his body.  His mind, however, was clear and he was very present to what was happening.

The doctor spoke to us as a family later that week, telling us my husband was dying.  At this point we did what we could do, wanting him to hear from friends and colleagues who held him in high regard.  So I made phone calls and emails to people around the country, and they each called back and were able to speak to him via my cellphone speaker.  Each of us – our sons and myself had time to tell him as best we could how much he meant in our lives.  And we said goodbye that evening.

Now, my family is back at their homes for a few days and the house is all too quiet.  I continue to encounter raw moments of despair, wishing I could have done things differently that Saturday afternoon.  All I have is turning my guilt over in  prayer, trusting that I can be of good to my children and grandchildren in future days.  Nothing else really matters except love to be shared.

In a few days family will return and we will comfort one another with warm memories of good times shared with Jack over his lifetime.

I realize you may have endured what I am experiencing at this time.  It is a part of the cycle of life.

I want to thank you for allowing me to tell you what happened.  There are a number of writers and experts in their fields who have sent articles and information for sharing with you.  I will do my best to represent them as soon as I am able.

In the early stages of dementia the ability to manage finances often can become impaired.  My mother used to pride herself on never needing a calculator, enjoying the exercise of adding up ‘in her head’ columns of numbers when preparing tax records.  In her healthy life she was meticulous about her financial affairs.  However, when her math skills began to slip, she turned to my brother, who lived nearest to her, for assistance.

Other families may not be so lucky.  If a parent or other loved one develops dementia, a risk that grows with age, finances can present a big problem.  In fact you may have to step in to make sure your mom or dad doesn’t rack up credit card debt or even go broke.

That’s what happened to Kay Bransford, an author and entrepreneur in Virginia, after her mom and dad both developed dementia.  When a home contractor tried to charge her parents more than $5,000 for needed repairs, more than five times the going rate, Bransford acted quickly to cancel the contract.

Because of the dementia her parents also went from donating once a year to their favorite charity to making many donations of $10 to $25 in response to mail solicitations that would thank them in advance for their pledge.  “I know my parents never pledged,” said Bransford, who started the blog Dealing with Dementia.  “It was distressing.”

Carolyn Rosenblatt, a registered nurse, elder law attorney and consultant, who runs the website http://www.AgingParents.com has much to say about dementia and debt:

“Dealing with a loved one with dementia and debt is tough work. If someone with dementia builds up a credit card or other debt, you might be able to get it forgiven, but it often takes some legal help.  Thousands of dollars may be at stake.  And, yes, calling the credit card company is worth it.  But be prepared for long waits, transfers to other departments, stonewalling, and delayed responses.  They want you to give up and just pay the entire bill.”

Rosenblatt advises:  “It’s better if things never get to that point.  Stay alert for signs of possible dementia and offer to help manage a parent or spouse’s finances early.  Be proactive.  Some adult children say, ‘We’ll just wait and see what happens,’.  What happens is you get wiped out financially.”

Rosenblatt offers six steps to take if a parent or other loved one has dementia:

1.  Face the problem.  Some adult children and even spouses, when they first see signs of memory loss, dismiss the problem.  Rosenblatt says, “When a person can’t remember a conversation they had yesterday, and it happens over and over, that’s not normal aging.”

2.  Know how dementia can affect financial skills.  Even in the early stages of dementia a person may not be able to deal with financial tasks such as checking a credit card bill and getting any errors corrected.  As a result, a loved one could end up paying recurring monthly charges — such as for subscriptions they never purchased or free trials they forgot to cancel.  It’s also common to have trouble paying bills — or to pay one bill twice or more and forget to pay another one.

3.  Offer to help with bills.  You can say, “Mom or Dad, I’m a little worried because I noticed you’re having trouble keeping track of things.  Can I help you pay the bills?”  That way you can verify that all bills have been paid correctly and on time, making sure utilities or insurance don’t get canceled for nonpayment.

One tactic, especially if your relative doesn’t use online banking, is to set up online access to credit card and bank accounts for yourself, and let your loved one continue to receive paper statements in the mail.

4.  Get durable power of attorney.  It’s important to get financial, durable power of attorney, which gives you the ability to make financial transactions for your loved one.  If your parent or loved one is cooperative, it’s easy, and you can get free forms online so you don’t have to pay an attorney to help.  If your parent or loved one is not cooperative and you can’t get power of attorney, then you may need to go to court to get guardianship or conservatorship.

5.  Enlist help.  If your loved one is reluctant to let you help with the bills, get help from a clergy member, another relative, or a mediator.  In Kay Bransford’s case her parents’ doctors encouraged them to have a loved one help manage their money.  When her parents forgot how to deposit cash and checks, they added their daughter to their bank account.  Bransford says, “From there I could monitor what was going on.”

6.  Take away the credit cards.  It can be difficult to take away a parent’s credit cards, especially when they’re very lucid on some days, says Sheldon Goldman, a certified financial planner in California who works with senior clients.  Goldman has a client whose father has memory issues, pulling out his credit cards to make donations to every charity he sees on TV and to send flowers to friends and family.

Kay Bransford faced the same issue when her parents, who normally used checks, pulled out plastic to sign up for an expensive magazine subscription.  She eventually took their credit card away and replaced it with a debit card tied to an account that contained only a few hundred dollars.  “I learned to find small ways to work around issues,” she says.

Appreciation for this article is extended to Allie Johnson, an award-winning freelance writer and contributor to CreditCardGuide

 

 

 

   

 

As we know, the journey through dementia in its many forms usually starts at home.  And we as caregivers desire for our loved ones to maintain their independence for as long as safely possible.

I want you to know about some helpful products shared with me by Nicole Lascurain of Healthline.com that may help your loved one exercise his/her memory and maintain independent living.

The following was written by Kristen Fischer for Healthline.com and medically reviewed by Dr. Steven Kim, MD on November 19, 2015.

To go directly to Healthline.com to view and/or order the products described below, click here.

The article by Kristen Fischer follows:

We selected these items based on the quality of the products, and list the pros and cons of each to help you determine which will work best for you. We partner with some of the companies that sell these products, which means Healthline may receive a portion of the revenues when you buy something using the link.

About 5.3 million Americans have Alzheimer’s disease. Of them, about 5.1 million are over the age of 65. Because of our growing elderly population, those numbers are only going to increase each year. The Alzheimer’s Association projects that, by 2025, the number of senior citizens with the disease will reach 7.1 million — a 40 percent increase from 2015.

 

Clocks

These can be an important device to help the person keep track of dates and times. Clocks such as this one have large digital faces that spell out the full date. It also has a sharp, nonglare display that can be useful for anyone with visual impairments. In case confusion between different times of day is a persistent issue, this clock tells you whether it is morning, afternoon, evening, or nighttime.

Big Calendars

Large print calendars like this one are an effective way to remember important dates. A large wall calendar is also hard to miss, helping anyone to keep track of dates, appointments, and special occasions.

Mind Games

Not only can games be wonderful to keep our minds active, but they can also introduce a social aspect. Match the Shapes is made specifically for people who have dementia and Alzheimer’s disease, as is Match the Dots. The latter involves matching up the dots on domino tiles, which can also trigger positive memories. People who enjoy playing cards might like Match the Suits, which has a similar concept. People who like word games will probably appreciate Grab & Go Word Search puzzles, which feature a simple layout and larger print.

Timed Pillboxes

A good pillbox can prevent confusion and help a person with Alzheimer’s disease ensure that they are taking the right medications at the right time — and not taking pills over and over again. This one has five different alarm times, plus a countdown timer to ensure medication is taken on time.

Picture Phones

Staying connected is important, especially when your friend or loved one has dementia or Alzheimer’s disease. The Memory Phone can be programmed with numbers and images so the user only has to push the person’s picture to call them. VTech makes a phone that has those same features, plus a portable safety pendant that you can use in case you need emergency assistance but can’t reach the phone.

Locators

The Emergency Medical Alert Bracelet might be a good option if the person you are caring for wanders. If the QR code on the bracelet is scanned, the scanner will see a message saying “provide location.” When he or she provides the location via a smart phone, tablet, or computer, any emergency contacts will receive a notification with the patient’s location.

There are plenty of innovative products on the market today that enable those with Alzheimer’s disease, dementia, or other forms of memory loss to live safely, whether they are fully independent or not. These products not only assist the individual but can offer much needed peace of mind for busy caregivers who want to make sure their loved ones are always safe.
References:

•2015 Alzheimer’s Disease Facts and Figures. (n.d.). Retrieved from http://www.alz.org/facts/

Copyright © 2005 – 2018 Healthline Networks, Inc. All rights reserved. Healthline is for informational purposes and should not be considered medical advice, diagnosis or treatment recommendations.

Rising health care costs in the United States have led seniors affected by Alzheimer’s to travel to other countries for affordable treatment.

In the United States, the financial costs of Alzheimer’s are staggering. According to the Alzheimer’s Association, out-of-pocket costs for Alzheimer’s care total $34 billion. When you add Medicare, Medicaid and other sources, the total cost to the nation comes to around $203 billion.

It’s no surprise that seniors and their families are looking for more affordable options for Alzheimer’s care. Many have found those options in foreign countries.

I received a most interesting and unusual response from caregiver David Duce following the publishing of my previous blog “Long-Distance Caregiving”.

David writes, “After caring for my 94-year-old grandmother with latter stage dementia at home for two years, I relocated her four months ago to a full-care nursing home in Transylvania, Romania.”

Please keep in mind that Dave and his partner are parents of three young children under the age of 10.  After his grandfather’s passing Dave became the caregiver of his grandmother.    With Dave’s permission I am sharing with you his story.

This article happens to be much more lengthy than others, but I felt the family circumstances deserve notice in order that you may understand what led him to make such a choice for his grandmother’s care.

Granny’s Story

My granny, we soon discovered, had Alzheimer’s.  And within a few months her condition rapidly deteriorated.  I brought in a daycare helper for about $800 per week (not nearly enough for the work she did).  She cooked, cleaned the house, bathed, and loved Granny like family.

I was 500 miles away with a career, two young children and another on the way.  At 92 years of age and still fairly mobile, Granny had a number of small accidents, leaving the sink tap running a couple of times flooding the house, and boiling the kettle dry on more than one occasion.

Then those words I had spoken to her years before came back to haunt me:  “No, I won’t put you in a nursing home, Granny.”  So I rented her house out for $1150 a month and she was collecting $1500 in Social Security benefits.  She had $45,000 from Gramps’ retirement.

We packed her things in a small moving van and we road tripped, singing along the way, “California here we come, right back where we started from..”  It’s weird, you know; even in her demented state she would say things that were so true and cutting to the bone.  I couldn’t help but question is she there inside trying to get out, or was it me reading into her statements.  The connection was subliminal, but it struck a chord deep inside.

We continued with a daycare aid about $1000 per week, and I took over the night care and weekends.  I found her naked and confused in the corner of the room a few times in the middle of the night, so I put a safety rail on her bed with bells and a baby monitor next to her so I could hear if she was getting out of bed at night.  I could hear when she was restless, and we soon got into a routine midnight bathroom run.  She still managed to get up and take off her clothes a few times after that, and I was worried that she was going to take a fall.

At that time I was earning about $60k per year and my partner was helping with Granny and managing the household. Granny still had a good sense of humor. And although I loved the time I spent with her, the stress and sleepless nights began to take their toll. Wiping butts and cleaning up messes was the least of it. Even reassuring her that everything was okay wasn’t a problem. She never really asked about Gramps; I became the man in her life. Whether it was her brother who had passed on many years earlier, or her dad, I played the role.

After nearly a year with Granny, my aunt offered to look after her for a while. She left her job to take care of her mom full time, but there was conflict. My granny was verbally abusing my aunt, who is the kindest person and already had a full house. Things took a turn for the worse. Granny had a couple of falls and visits to the emergency room but fortunately no broken bones. Additionally, Granny was not happy at my aunt’s; and when I would speak with her, she would insist that I come get her because they were trying to kill her – not true, I’m sure. My granny would call out the window for the police and had numerous conflicts with family members, whom she never really liked. She knew she didn’t want to stay there. Then there were some 911 calls, and you know, they send the whole entourage, fire trucks, etc.

My aunt did a fine job, but I could tell it was just a matter of time before something bad happened. I explored the option of a home; and with the condition she was in (skilled nursing) care started at around $5k per month. I would have to sell her house worth about $220k. I had to do something.

We met with an estate planner. His advice was to spend down the assets so we could get my grandmother into a Medicaid-covered home. This didn’t seem like the right plan.

I had been working in Eastern Europe over the years and had fallen in love with the countryside of Romania, Transylvania, to be precise. The food is natural and the exchange rate is very favorable, about 4 to 1. Admission into the European Union has opened the door for funding grants, and the medical profession has benefited tremendously.

So I thought we’d give it a try. After investigating our options, we found a brand new nursing facility owned and operated by The Church. We were fortunate in finding a home that provides exceptional care at an affordable cost.
I stayed there (in the immediate area) for the summer and visited most every day at different times of day. The adjustment for my grandmother wasn’t difficult. For about the first week she asked when we were leaving, then that was about it. I would tell her the new house wasn’t ready yet, or we were still on vacation.

We had one really bad day where she thought a nurse had hidden her rings. They were quick to recognize the problem. The nurse took off her white coat and reassured Granny that she was her friend, and had her calmed down in a matter of minutes.

Granny has been there nearly six months now. She has a healthy appetite and is very strong. I have independent people, who check on her at twice weekly and report directly to me. She developed a rash on her face, which the staff was quick to remedy.

Our situation has turned out better than I anticipated, so well in fact that I am starting a service to help other families who are in a similar situation,  Angels Respite Program.

 

Questions regarding this arrangement along with Dave’s answers:

  1.  Steps you took to get your grandmother accepted:  “In all fairness credit is due to family friends.  They found a recently completed full-care nursing facility.  The application process was very simple; a copy of blood work, medical history, and an interview.  I also provided three months worth of medications for the transition.”
  2. How you made the long trip with her:  “As you can imagine I was very nervous before the flight, not knowing what to expect, ruminating about all of the possible scenarious, a freak-out scene at customs or refusal to get on the place.  None of that happened.  I told her we were going to Europe, and she seemed excited and was the perfect patient/passenger the whole way.  At 94 she sleeps a lot.  We flew Lufthansa andthey were great to help with wheelchairs and a family waiting room during a layover in Frankfurt.  I gave Granny a baby aspirin and dressed her with some compression sleeves and socks per doctor before the flight.  She even had a glass of wine.
  3. Did you go it alone:  “I didn’t take her alone; my partner and I were also travelling with our three young kids.
  4. How do you communicate with your grandmother long distance?  The nursing facility arranges for us to talk via Skype.  Granny has some hearing problems, but we just speak slowly; she recognizes me most days.  The Internet/Skype connection is good, and I have someone there to make the connection for us.  She likes to show her pictures she has colored.”
  5.  How are financial arrangements handled?  “I have set up an electronic payment through an international bank, where it is converted to Romanian currency Leu (Lay).”
  6. What about elder care in Romania at this time?  “There is much to share here; Romania is at the historical crossroads of Europe.  The discovery of insulin, invention of the fountain pen, and jet engine – all Romanian.  Since the end of communism there has been a technical and medical revolution, bringing Romania back to the forefront.  E.U. funding has allowed the latest medical equipment to flood into this developing economy.  But more importantly it’s the people; there is a certain passion about them, a positive energy that is undeniable.  I see it in the eyes of the nurses; they get it!”

To learn more by communicating with Dave Duce directly, go to:  angelsrespite@hotmail.com.

 

 

 

 

Caring Long Distance

My Aunt Eunice has resided in a nursing home since 1982 when her hip gave way due to osteoporosis at the age of 55.  Like my grandmother, my aunt always walked with a limp.  She was my dad’s younger sister and was dearly loved by her family, loved perhaps too much in that, having some developmental delays, she was protected at home and never ventured out for any kind of employment.

Only 14 years older than I, my aunt was fun to be with.  My grandfather always kept her favorite snacks at the ready, such as Royal Crown Cola and ‘Brown Mules’ in the freezer.  They bought her a piano and made sure she had lessons for years.  (That piano never seemed in tune!)  But since I didn’t have a piano, I gravitated to hers and taught myself to play hymns and other tunes when we visited.  My aunt only made it in public school through the 4th grade, but she was my buddy growing up.

After the hip fracture in 1982, she never really walked again.  She is now 88, and I am her guardian and long-distance caregiver.  My mother did this for her as long as she was able.

Our grandfather provided well for my aunt, but when her money eventually ran out, she had to rely on Medicaid.  As I may have told you previously, I visit her every few months.  Our outing for the day includes going out for breakfast and then to a store like Wal Mart to shop for whatever she needs.  Since she can’t walk, we enjoy breakfast in the car and she waits while I shop.

This arrangement has been good for a number of years.  However since my husband’s health has become fragile over the past several months, I can’t leave him overnight like I used to.

Not wanting to neglect my aunt, I came up with an idea early today on a way to let her know she is still loved.  Online I discovered there to be a grocery store within a mile of my aunt’s nursing home.  And this grocery has a fax line!

So late this afternoon my Aunt Eunice was able to enjoy a Dr. Pepper and a slice of cheese from her stash of goodies delivered by the store.

Meet Caregiver Amy Goyer

For many of us our days come down to a constant juggle between managing life, work, and caregiving.  I would like you to meet Amy Goyer, who is a primary caregiver to her parents ages 85 and 88.  She also happens to be AARP’s Family Expert and media spokesperson on a variety of caregiving issues.

November happens to be NATIONAL CAREGIVERS month.  I found a recent recorded interview with Amy Goyer most refreshing with insightful, practical ideas and suggestions.  To enjoy her interview click here.

She is the author of Juggling Life, Work, and Caregiving, loaded with tips on how to manage caregiving along with life and work.  This book is available at a discount through Amazon.com.

Is the Effort Worth It?

“Momma has very little recall with short term memory, so a card or a phone call would be enough. We all just do the best we can.”   Those were my cousin’s words for me as I was trying to decide about attending her mother’s 95th B-day celebration (out of state) set for this weekend.  I believe she had resigned herself to ‘the way things are.’

It is true, with moderate dementia, my aunt may not remember that I came to see her within a few hours after I leave.  Though she may not remember I was there, I will know that I was a part of her special day.  And her caregivers, my cousins, will feel the peace and support of having had family together, even if only for a few hours.

Thinking back to that period when my own mom was living in a nursing home miles from her loved ones and remembering a few of those slow, quiet Saturdays we used to spend together, I used to debate whether to call a few family members and say hi, or should just not bother them.  At those times I felt isolated and a bit unloved.  I wonder if our family thought that because she had dementia, that my mom had no feelings.

When family were able to make the drive to visit, I could sense her pleasure and delight as we sat quietly together.  As her disease progressed, she lost the ability to speak.  But even so, when her family showed up, there was a peace and contentment that filled the air for both of us.

What does one get a 95-year-old for her birthday? —  For my Aunt G I settled on an inexpensive necklace she can wear around her neck anytime with no fuss.

Whenever I call my cousin, as we end the phone visit, she usually asks, “Would you like to speak with Momma?”  And I always do.  My aunt has been slipping a bit with her memory for quite some time, but she can always keep up the conversation for a few moments if I do my part, asking easy questions about is she feeling well and maybe the weather.  She is still able to keep up ‘appearances’.

As many of us caregivers know, whether it be through a phone call, a note or perhaps a visit, the deep joy of connection in the moment can mean much to a loved one and their caregivers.

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