Category Archives: Caregiving

Caregiving

Christmas gift ideas for loved-ones with dementia

Leave a comment
Wayne is trying out some of the Twistables by Crayola.
Wayne is trying out some of the Twistables by Crayola.

Once friends or loved-ones begin their journey down the path of dementia, gift giving becomes much more difficult. Previous interests change or fall away. Abilities diminish, concentration and focus shorten as senses dull. Warm socks, stretchy pants and button-up tops may make dressing easier, but finding something your loved one would enjoy can also make a nice gift.

Gifts for the three stages of dementia

EARLY STAGE

  • Goldfish- easy to maintain, inexpensive to replace
  •  Jigsaw Puzzles-specifically tailored to age and level of loved-one’s ability. Number of pieces should match their ability and interests
  • Adult Coloring books – especially the books themed from the1950s. Pictures and information from that era may also trigger memories from youth.  Crayola Twistables  are nice and sturdy to fit in an older hand.
  • Favorite movies such as “Sound of Music”, “Miracle on 34th Street” along with any Bob Hope, John Wayne or Gary Cooper movies
  • CDs, an ipad or radio. Any type of music your loved one might enjoy. If you are not sure, go to BBC Music Memories and play snippets of songs from a variety of eras and types until you  learn what songs provide enjoyment.
  • Card games such as ImageSnap card game

MID STAGE

LATE STAGE

Since one of the companion maladies that often accompanies dementia is loss of the ability to smell, perfume or scented soaps are not items that would bring the joy to your loved-one they hadin the past. Many folks with declining ability also have food limitations dueto diabetes and other medical issues. Because of that, gifts of candy or otherfoods may not be appropriate.

One lesson that I learned about candy was that at some point, my Mama lost the ability to distinguish between the candy and the paper wrapper. She would often try to put the whole thing in her mouth – wrapper and all. Things that require batteries can also be a problem along with any article of clothing that has intricate snaps, buttons or closures.

A Word of advice on gift giving

Giving your loved-one a present is wonderful, but to really brighten up their day try to arrange it so that you can participate in the activity. For example, don’t simply give a movie – watch it with them. Bring a color book for yourself and plan to spend a bit of time coloring together. Best of all, instead of handing your loved-one a CD of old songs, attempt to discover music they loved as a youth, learn the lyrics and have a sing-along. The time spent together is the best gift of all.

Gifts for Caregivers

Cover of New Every Day
Paperback or Kindle edition

A friend of mine, Dave Meurer has just published a book titled, “New Every Day – Navigating Alzheimer’s with Grace and compassion”. He is an award-winning author and writer of a multitude of books dealing with family life.  I have loved every book Dave has written – they are always filled with humor, love, and insight. You will not be disappointed.

From the Back of the Book: A friend on the journey of caring for someone with Alzheimer’s
Alzheimer’s. It breaks your heart, disrupts your plans, and consumes enormous amounts of time and energy. When someone you love has Alzheimer’s, you need more than just information on the disease–you need a break. You need a laugh. You need a friend by your side who knows exactly what you’re facing.
Award-winning humorist Dave Meurer is that friend. New Every Day is packed with practical information–like where to look for financial help and how to get the DMV to take away the car keys so you don’t take the heat for it–along with plenty of true stories from Meurer’s own experiences navigating life with a loved one who suffers from Alzheimer’s. Here you will find both hard-earned wisdom and badly needed comic relief for your journey down this difficult road. With compassion born of experience, Meurer helps caregivers develop the ability to relax, adapt, and even laugh again.

Paperback or Kindle edition
Paperback or Kindle edition

Caring for a loved one with dementia 
My book, “FinishingWell: Finding Joy in the Journey”, is a collection of stories and tips about doing life with my Mama, who fought the good fightwith dementia for over a decade.The journey down the pathwayof dementia is seldom static. Change is the norm. Like lost pieces in a puzzle,the picture never quite comes together—something is always missing.

Dementia is a tough disease. It wreaks havoc on the emotions of both loved ones and caregivers. It can often be a long trek – taking you up the hills of lost-ness and confusion, as well as down through the valley of the shadow of death. We don’t know how to fix it nor do we have all the answers, but we have walked this road. It is our prayer that the anecdotes in this book will be both a help and an encouragement for your own unique journey.

Caring for my Mama through her decline felt like an uncharted wilderness. Resources were few and far between. There wasn’t a lot available in the way of guidance or help, but we were determined to bring as much joy as possible along the way in spite of the challenges. 
This is our story – actually, it’s Mama’s – who loved to say, that despite every difficulty, she was still in good shape for the shape she is was in. 


Caregiving

Resources, Applause, and Help for Caregivers

Leave a comment

Coretta Scott King stated, “The greatness of a community is most accurately measured by the compassionate actions of its members.”

Ms. King’s statement certainly describes most family Caregivers I know. They unquestionably contribute to the greatness of their community by their compassionate actions.

Caregivers make a difference. Friends make a difference for caregivers.
Caregivers make a difference. Friends make a difference for caregivers.

As we move closer to the end of the year, take a moment to consider and celebrate the contribution of friends and family members who care for loved-ones. Don’t just give a pat on the back. Offer help in concrete ways. Family Caregivers are certainly heroes, but not ‘Superhero’s (they can’t go on endlessly and never tire).

Usually, Caregivers are not complainers and are often reluctant to ask for help. Because of that, I thought I would offer a few suggestions that will provide concrete suggestions for those who are either a Caregiver or a Friend of one.  

  • Friend: provide a meal for someone who is caregiving.
    •  Caregiver: Accept/request a specific meal.
  • Friend: Offer to sit with a loved one.
    • Caregiver: Accept the offer for someone else to sit with or visit your loved one.
  • Friend: Offer to run errands.
    • Caregiver: Accept the offer and make a list.
  • Friend: Clean/do laundry (even taking larger bedding to a laundromat).
    • Caregiver: Accept the offer – you can’t do it all.
  • Friend: Ask your friend specifically what you can do to help.
    • Caregiver: Accept the help, answer honestly.

Some caregivers don’t ask for help because they don’t recognize when they need it. I came across a helpful article that may shed some light on the ‘asking for help’ issue. Caregivers asking for help – recognizing when you need it.

Caregivers Resources:

The following is a list of websites that can be helpful for both caregivers and seniors alike. Please let me know if there is any resource that I should consider adding to this list.

Remember, you can’t do it all whether you are the caregiver or friend. Sometimes the best help may be a welcome visit that provides a temporary distraction.

Paperback or Kindle edition
Paperback or Kindle edition

Has your world been touched by dementia? My recent book, “FinishingWell: Finding Joy in the Journey”, is a collection of stories and tips about doing life with my Mama. May it encourage and inspire you to find the joy on your own, unique journey.

Find our group on Facebook 

Keep in mind that links can change. If you discover a broken link,please make me aware of if so I can fix it. Thank you.
Disclaimer: ThoughI check all links for reliability, I cannot personally vouch for each company listed. Please use wisdom as well as your own discretion when engaging with any of the resources listed above.
Caregiving

Are you a Caregiver? Do you know one?

1 Comment

William Shakespeare wrote:  “Some are born great, some achieve greatness, and some have greatness thrust upon them.” Most family Caregivers I know fall into that last category.

It turns out that November is National Family Caregivers Month. Caregivers are typically folks who stepped up to finishing_well_in_life_cargvrthe plate and accepted the role of caring for parents, spouse or other loved-ones.

This is a good time to celebrate the contribution of those volunteer friends and family members who care for loved-ones – not by a pat on the back, but in some concrete ways. Family Caregivers are certainty heroes, but not ‘Superhero’s (meaning they can go on endlessly and never tire).

Usually, Caregivers are not complainers and are often reluctant to ask for help. Because of that, I thought I would offer a few suggestions that will provide concrete help for those who are either a Caregiver or a Friend of one.

  1. Friend: provide a meal for someone who is caregiving. Caregiver: Accept/request a specific meal.
  2. Friend: Offer to sit with a loved one.  Caregiver: Accept the offer for someone else to sit with or visit your loved one.
  3. Friend: Offer to run errands.Caregiver: Accept the offer and make a list.
  4. Friend: Clean/do laundry (even taking larger bedding to a laundromat).  Caregiver: Accept the offer – you can’t do it all.
  5. Friend: Ask your friend specifically what you can do to help.  Caregiver: Accept the help, answer honestly.

Additionally, ‘Alzheimers.net’ offers some very specific ways to help the unsung heroes in our world. Click on the following link for ideas: 7 Ways to Celebrate  Caregivers 

Additional caregivers resources include:

Remember, you can’t do it all whether you are the caregiver or friend. Sometimes the best help may be a welcome visit that provides a temporary distraction.

(Disclaimer: Though I check all links for reliability, I cannot personally vouch for each company listed. Please use wisdom as well as your own discretion when engaging with any of the resources listed above.”

Keep in mind that links can change. If you discover a broken link, please make me aware of if so I can fix it. Thank you.

Has your world been touched by dementia? My recent book, “Finishing Well: Finding Joy in the Journey”, is a collection of stories and tips finishingwellinlife3Dcoverabout doing life with my Mama. May it encourage and inspire you to find the joy on your own, unique journey.

Find our group on Facebook 

Caregiving, Safety

Help, my Mother-In-Law is moving in….

Leave a comment

….and I think she has dementia. There are so many ways this post could go from this headline, but today, I am going to focus on the ‘Safety’ aspect of bringing an elderly loved one home. The person who inspired the title of this post had a toddler, so she had already done some ‘baby proofing’ such as securing cupboard doors, pulling knobs off the stove, and plugging outlets. Adults, however, bring a whole new set of safety issues – essentially you may need to ‘senior-proof’ your home.

Once Mama came to live with us, we began the practice of keeping the doors leading outside locked at all times. We thought that was enough to keep Mama from going outside alone. We were under the mistaken impression that dementia would prevent her from remembering how to unlock doors.

That’s when we discovered ‘Muscle Memory’.  It turned out that evenfinishingwellinlife-lock though her mind didn’t remember how to unlock a door, her fingers remembered and were able to turn the lock quite nicely. It didn’t take too long to discover there was much more to be done.

My husband Wayne quickly went to the ‘big box’ store and bought a new lock he could install near the top of the door where Mama would never think to look and couldn’t reach. We also hung a very large Christmas bell around the finishingwellinlife-bellsdoorknob to create noise for added security.

There were a few things we could do right away that made a big difference. Since falls are a leading cause of injuries, we removed throw rugs and anything else that could cause her to trip. We noticed that Mama liked to sit in a certain place on the couch, so we made it ‘her’ place.  We also placed a folded blanket under the couch cushion to bring it up higher so she would have an easier time standing back up. Adding more, and brighter lighting, as well as several night-lights were also easy to do.

The bathroom needed more attention. We obtained a raised toilet seat, a shower chair, grab bars for the walls and a bubble bath mat for the shower—there was already a shower wand that extended the facet. I always set the water for Mama, so there wasn’t a problem with getting the hot and cold mixed up.

“A Place for Mom” has an “Elderly Home Safety Checklist” which can be printed and filled out for handy reference.

“Good Call” has a resource as well, “A Guide to Helping Senior Citizens Stay Safe at Home” it is accessible and reader-friendly, with larger font and compatible with screen-reader technology. Their optimized guide also includes a printable PDF version to share to those who can’t access the internet.

For additional help and resources, use the federal government’s Elder Care Locator  to find your local office, or call 800-677-1116 to inquire about home modification loans and services available to seniors.

Remember, at the end of the day, we can only do what we can do to make a home a safe place for our loved one. My sister and I would tell each other all the time, “We’re doing the best we can, and so is Mama.”

Caregiving

Send in the Butterflies

Leave a comment

Back when my Mama was in the early stages of dementia, we tried to help her be as active as possible by taking walks, eating at restaurants and walking laps at a local gym that has an indoor pfinishing-well-in-life-butterflies_1ool.

In the course of these outings, we naturally came across folks who didn’t know that she had dementia. Since Mama was very social and friendly, she would often initiate a conversation with someone. It usually didn’t take too long before the other person would begin to suspect that the nice lady they were chatting with was not functioning at 100 %. Sometimes it was a bit of a dilemma; we didn’t want to dishonor Mama by talking about her as if she wasn’t there, but at the same time, we needed to clue them into what was going on.

We would try to catch the person’s eye and mouth the word ‘dementia’.  A puzzled expression was quickly replaced by a smile and nod as understanding dawned.

A couple of recent articles has proposed excellent solutions for those ‘awkward moments’.

The first one tells about a using a card the size of a busfinishing-well-in-life-butterflies_2iness card to relay the information: New ‘purple card’ system would help people with dementia 

Madeleine Fraley’s husband has dementia, so she created a simple card explaining the situation that she could discretely hand to someone. The purple-hued card  states, “My companion has memory problems. Please be patient. Thank you!” 

What a brilliant idea! That would have been quite useful to have on our outings.

The other clever idea is really more for a hospital or medical situation. They are using butterflies to help ifinishing-well-in-life-butterflies_3dentify patients who are suffering from dementia. The butterfly symbol is stamped on everything associated with the patient. Staff is trained  to keep an eye out for the symbol so they can support and treat the patients appropriately.

Francesca Hall, the hospital’s dementia champion states, “It’s vital that people know that a patient has dementia so they can treat and support that person appropriately to ensure the best care possible.”

The important thing here is to keep your loved one as active and social as possible while continuing to treat them with dignity and honor.

Caregiving

De-mystifying De-list-ifying

Leave a comment

My phone rang while I was eating lunch today. Grabbing my phone, I saw an unfamiliar number. I decided to answer anyway because the care home where my Mama lives have several phone lines and I didn’t want to take the chance that it was a number from them that I hadn’t added to my ‘contacts’ yet.

Nope, it was a sales call. Annoyed, I resumed my lunch. It suddenly occurred to me that I had read an article in a publication sponsored by the California Bar Foundation that addresses unwanted phone calls. It listed various places you can call or visit online to get your name and contact info off of call lists. It seemed like a good idea at the time, but I hadn’t followed through yet.

As soon as I got the chance, I hunted down the publication and began the process of getting off of the call lists. There is a phone number listed for the National Do-Not-Call Registry, which is managed by the Federal Trade Commission (FTC). To register, call 888-382-1222 or go to the website www.donotcall.gov.finishing-well-in-life-phone

I decided to go to the website, where they tell you that this list never expires and very kindly allow you to check to see if you might already be on it. After clicking on the blue ‘Verify Here’ button, I simply entered my phone number and email address and in a short time, received an email from them that said, “National Do Not Call Registry – You Are Not Registered”. Easy. And then all I had to do was to go back to where I began, but this time, choose the brown ‘Register Here’ button.

The article also provided a site to have your name removed from mailing lists www.dmachoice.org which can be filled out online, or downloaded and mailed in.

But wait! There’s more! You can also ‘Opt out’ of credit agencies’ pre-approved credit offer mailing lists. Call 888-5-OPTOUT (567-8688) or opt out online at https://www.optoutprescreen.com.
This may seem like too much work just to save ourselves the time of hanging up on sales calls, or tossing junk mail but, remember; those with cognitive impairment are incredibly vulnerable to these types of pitches.

We used to have a neighbor who loved ordering things from catalogs. Because of that, her name must have been sold to lots of lists because she was constantly being solicited by both telemarketers and door-to-door sales visits. If we saw someone knocking on her door, my husband would usually go check out what was going on to interrupt and intervene in some way if need be.

It is up to us to keep our loved ones as safe as we can from those who would try to prey on their emotions through sales pitches. A little time spent now will save in many ways later.

What experiences have you had with unwanted sales pitches?

Caregiving

Caregiver awards

Leave a comment

It turns out that the government has declared November as “Family Caregiver’s Month”. Who knew? It’s well deserved and a great idea since, for the most part, cargiving can be a rather isolating endeavor. Those caring for their loved ones continue to show up day after day despite the odds, hours and obstacles.

Caregivers are not blind to hard reality. Or to the fact that short of a miracle, no matter how much they try, and how hard they work, their loved one’s abilities will continue to diminish and disappear until their time on earth finally draws to a close. Caregivers are often on a first name basis with such difficulties as isolation, financial strains, feelings of guilt and uncertainty as well as the uncomfortable reality of a shift in roles.

Why continue to labor in such a thankless and lonely burden of love? What keeps a person going? Part of the secret may be that they have discovered the ability to find sparks of joy in their everyday life as they celebrate even the tiniest victories.

The vast majority of these heroes will never be recognized for their tireless efforts. Of course, recognition is not what drives them. It is a sense of love mixed with duty that is usually the compelling force. Yes, there will always be those who simply find they have no other choice, but that is a fact of life.

I recently came across a study that provides one of those sparks of joy and reason to celebrate while caregiving.

It turns out that a study led by Johns Hopkins suggests that caregivers actually live longer, (no, it’s not that it just seems that way)

According to the Johns Hopkins-led study published online in the American Journal of Epidemiology, an analysis of data previously gathered on more than 3,500 family caregivers suggests that those who assist a chronically ill or disabled family member actually enjoy an 18 percent survival advantage compared to statistically matched non-caregivers. Indeed, caregivers in the study lived a full nine years longer than non-caregivers over the course of the six-year study.

“Taking care of a chronically ill person in your family is often associated with stress, and caregiving has been previously linked to increased mortality rates,” says first author, David L. Roth, Ph.D., director of the Johns Hopkins University Center on Aging and Health.

He adds that “In many cases, caregivers report receiving benefits of enhanced self-esteem, recognition, and gratitude from their care recipients.  Thus, when caregiving is done willingly, at manageable levels, and with individuals who are capable of expressing gratitude, it is reasonable to expect that health benefits might accrue in those situations.”

So, while being a caregiver may have its share of demands and difficulties, try to find ways to appreciate the benefits of caregiving as well as the challenges.

Caregiving

Happy. Happy? Holidays

Leave a comment

According to the Hallmark and Norman Rockwell, the holiday season is a wonderful time filled with family, fun, and food. The reality is often quite different for those facing the challenges of caring for someone with dementia. Especially with the added burden of shopping, preparing, and all the extras that can go along with the season.finishing-well-in-life-greetings

Since stress is a part of everyday life for caregivers, it’s not always easy to tell when you are reaching a crises point.

As a caregiver, you may be so focused on your loved one that you don’t realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:

Do you have signs of caregiver stress? Some signs include:

  • Feeling overwhelmed or constantly worried
  • Feeling tired most of the time
  • Sleeping too much or too little
  • Gaining or losing a lot of weight
  • Becoming easily irritated or angry
  • Losing interest in activities you used to enjoy
  • Feeling sad
  • Frequent headaches, bodily pain or other physical problems
  • Abusing alcohol or drugs, including prescription medications

People who experience caregiver stress can be vulnerable to changes in their own health. Risk factors for caregiver stress include:

  • Social isolation
  • Depression
  • Financial difficulties
  • Living with the person you are caring for
  • Higher number of hours spent caregiving
  • Lack of coping skills
  • Difficulty solving problems
  • Lack of choice in being a caregiver

Searching through a variety of resources, such as AARP, Mayo Clinic, friends, as well as personal experiences, I’ve isolated 10 keys to help keep your stress in check.

1. Take care of your physical needs first. Eat healthy foods and get plenty of water. Try to avoid sweets or excess alcohol. Get as much sleep as possible; if you have trouble sleeping at night, try napping during the day. See your doctor to get recommended immunizations and screenings. Try to find time to exercise, even if it means you have to ask someone else to provide care while you work out.

2. Be social. Make an effort to stay well-connected with family and friends who can offer nonjudgmental emotional support. Isolation increases stress. Set aside time each week for connecting, even if it’s just a walk with a friend.

3. Join a support group. A support group can provide both validation and encouragement. As an added benefit, others in the same situation can help with problem-solving strategies for difficult situations. People in support groups understand what you may be going through. A support group can also be a good place to create meaningful friendships.

4. Get connected. Find out about caregiving resources in your community. Many communities have classes specifically about the disease your loved one is facing. Caregiving services such as transportation and meal delivery may be available. Other service providers can include home health aides, homemakers and home repair services. Volunteers or staff from faith-based or non-profit groups might be of help as well.

5. Take a break. You need it. Your loved one might benefit from someone else’s company. Think about respite care by friends, relatives or volunteers. Or try for a weekend or longer vacation by turning to a home health agency, nursing home, assisted living residence or board-and-care home; these facilities sometimes accept short-term residents. Adult day centers, which usually operate five days a week, provide care in a group setting for older people who need supervision.

6. Focus on what you can do. Accept the fact that you simply can’t do everything! Resist the urge to take on more activities, projects or financial obligations than you can handle. If someone asks you to do something that will stretch you too thin, explain honestly why you can’t — and don’t feel guilty.

7. Get organized. Simple tools like calendars and to-do lists can help you prioritize your responsibilities. Always tackle the most important tasks first, and don’t worry if you can’t manage everything. Create a list of ways that others can help you so you can be ready with an answer when someone offers to help.

8. Give yourself grace. It’s normal to feel guilty sometimes, but understand that no one is a “perfect” caregiver. Believe that you are doing the best you can and making the best decisions you can at any given time.

9. Deal with your feelings. Bottling up your emotions takes a toll on your psyche — and even on your physical well-being. Share feelings of frustration with friends and family. If you experience symptoms of depression — extreme sadness, trouble concentrating, apathy, hopelessness, thoughts about death — talk to a medical professional.

10. Stay positive. If you have to, paste on a smile and do your best to avoid negativity. Hold a family meeting or call an elder care mediator to resolve conflicts with siblings and other relatives. Instead of dwelling on what you can’t do, pat yourself on the back for how much you are doing, and focus on the rewards of caring for someone you love.

If you find yourself identifying with any of these issues, please try to find some way to reach out for help.

If you have found others way to cope, please share with the readers.

Caregiving

Managing Medications

Leave a comment

Does your loved one take medications? A lot of them? This post just might help make it a bit more manageable

In my research for ‘all things dementia’, I came across the following site:  Managing Medications for People with Dementia  dementiameds.com

It is UK based, so some of the information might not apply, but there are quite a few great tips on how to manage the vast volumes of medications that some of our loved ones have to take.

When I was managing my Mama’s multitudes of meds, it was overwhelming at times. My sister created a fabulous Excel doc that charted all the information regarding each medication. Among other things, it included the frequency, the dose, when it was last ordered, the RX number and even price.  In spite of all the finger pokes, injections and pills (oh my), Mama remained fairly agreeable.

Mama’s general cooperation was something I was always very thankful for as I knew some had outright fights on their hands at times to give their loved-ones all the meds they needed. Even so, it was a challenge at times to get everything just right.

If you are on medication overload, check out this site and glean all the useful/helpful tidbits that can make meds aspect of caregiving a bit more manageable.

Please share any tips you have come across while attempting to conquer the medicine mountain.