Caregiving: calendars & schedules

Wall calendars are the caregiver equivalent of ancient cave drawings. A 20” wide by 30” high monthly calendar has been part of our kitchen forever.

 

Through home caregiving and basically single parenting it was my alter ego. Graphically displayed in color, it emphasized what had to be done and what had just happened.

 

Now in the care facility era we have grown to two wall calendars. One hangs in Patti’s room, the other still anchors our kitchen. For example, the circles pictured below from July 2007 count and record 'family outings' with Patti.

                     

Patti’s room calendar, on the other hand, records visitors, outings, important dates, etc. Patti can somewhat see and understand it, but more importantly shifts of staff, and visitors can glance at it and get a quick grasp of what has been going on outside of her ‘medical’ news. It provides ‘reality’ to help offset Patti’s MS related memory loss and cognitive challenges.

 

At home, with the hustle and bustle of daily life it’s easy to fall into a trap of ‘out of sight, out of mind’. Walking by the calendar multiple times a day I am constantly reminded, “Are we keeping Patti involved with family and home?”

 

When someone is challenged and dependent on you, a calendar or schedule is a ‘door’ for them. If the door opens to nothing and looking back shows nothing, couldn’t that seem ominous?

 

As for me, well … there is the fun of drawing and writing with colored markers … kind of a Peter Pan kind of bonus. <grin>

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving

Caregiving: adapting media visual impairment

This evolving project of converting aging VHS tapes to DVD had its genesis in a NEED to find a way for Patti to SEE family pictures.

 

Multiple Sclerosis visual impairment prevented Patti from seeing and enjoying photographs. I found that by converting photos to DVD and displaying them on a mega screen TV that she was able to once again enjoy looking at family photos. Beginning with photo slide shows the path of trial and error led to converting aging family videos to DVD.

 

Sometimes you find gems. Re-discovering this 20 second clip felt a bit like video mining.

 

American tourists with cameras can wear down even the statuesque poise of British Royal Guards....

 

British Royal Guard sticking out his tongue    (00:23)

(Some readers have noted they have challenges using the AOL video display. For your convenience you can simply use the links to view the video directly.)

You Tube

http://www.youtube.com/watch?v=TgW4CVU4DcI

Google Video

http://video.google.com/videoplay?docid=5414311848940698511

 

Caregivingly Yours, Patrick Leer
Tags: caregiving, Multiple Sclerosis, visual impairment, Bristish Royal Guard

Caregiving: Video Genealogy

Continuing with my project of converting aging VHS tape to DVD I found myself in video alchemy as I tinkered with footage over half a century old. 

 

It is also eerie to realize that I am the only person in both videos alive. Strange but fun to spend a couple minutes with everyone ‘walking’ and ‘playing’ again.

 

NOW I am grateful someone was always sticking a camera in someone else’s face. <grin> Do not hide from cameras. Embrace them. Half a century from now you may be dusted off and restored for generations that never knew your smile.

 

(Some readers have noted they have challenges using the AOL video display. For your convenience you can simply use the links to view the video directly.)

 

Video Genealogy: (1940) Leer Family Washington, DC (02:14)

You Tube

http://www.youtube.com/watch?v=9Us2V7IjPrU

Google Video

http://video.google.com/videoplay?docid=169253810944673345

 

Video Genealogy: (1958?) Morgan & Leer Families (02:19)

You Tube

http://www.youtube.com/watch?v=xrwAT7R2W7Y

Google Video

http://video.google.com/videoplay?docid=4724050279923114161

 

(Viewing notes: I am the older kid in the 1958 video. It is so odd to see men wearing shirts and ties for a casual outing in 1940 or the propeller aircraft and blimp flying over Washington, DC. My maternal grandparents in 1958 video were immigrants; my grandmother born in Ireland, my grandfather born in Wales.)

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, converting VHS to DVD, Video Genealogy, 1940, 1958, Leer, Harvey, Morgan, Cavanaugh

Caregiving: eau de urine

How often in a “typical” chat between two people do incontinence, bladder accidents, and tips for clean up work their way into conversation? 

 

I am blessed with a washer and dryer in our home. Many caregivers need to use laundromats. That is an exponentially more difficult challenge including everything from social stigma of eau de urine to how to store urine soiled laundry.

 

On a worst case day with Patti at home, I must do 2 to 3 loads of incontinence related laundry. A caregiver requiring a laundromat is quickly overwhelmed.

 

Incontinence and bladder control affects not only the obvious such as clothing and bed linens but furniture, car seats, carpeting, and of course wheel chairs.

 

With the graying of America and booming sales of ‘Depend’ products it is safe to say this topic will affect more than just veteran home caregivers.

 

In our story, I guess it has been over a decade that incontinence (both bladder and bowel) has been a daily part of living with Multiple Sclerosis as a family. I’ve learned some truths, the hard way …

 

ü  “DEPEND” products cannot be imitated. Generics have not been worth the cost savings. … “Depend Boost” inserts for women, or “Depend Guards for Men” are more than worth the additional cost to improve “Depend” underwear protection especially if an outing or sleep will make changing difficult.

 

ü  After exhausting every known retail cleaning product unsuccessfully I cannot believe that as a cat owner it took me so many years to connect the dots that urine is urine. I swear by “NATURE’S MIRACLE”, available in pet stores. I use it for everything related to incontinence from pre-treating laundry, to laundry, to cleaning and shampooing furniture, car seats, and carpeting.

 

(For the record, I have never received a penny from the above products or manufacturers.)

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Multiple Sclerosis, incontinence, Depend, Nature's Miracle

Caregiving: Enhanced Adult Family Care (EAFC)

While net surfin’ recently I discovered another caregiver journal, Family Caregiver Info and Family C.A.R.E. and learned about yet another innovative Massachusetts health care program. 

 

Enhanced Adult Family Care (EAFC)

“Enhanced Adult Family Care (EAFC) is a MassHealth program that pays family members or non-family members to care for elderly or disabled adults at home. The goal of the program is delay or prevent nursing home placements. EAFC makes it possible for frail elderly and disabled residents to stay in their own homes or homes of caregivers instead of being institutionalized.”

 

Your caregiver will receive:

·        Up to $1500 per month for caregiver services ($18,000 per year)

·        Support and training

·        Home visits by social workers and registered nurses

·        Respite care (up to 14 days per year)

 

Massachusetts is already taking the lead with their health care insurance plan that I mentioned in my July 11th entry Caregiving: 'country is watching'. However the above from a caregiver’s perspective is jaw dropping innovation.

 

The “shot heard ‘round the world” echoed from Lexington Green on the morning of April 19th, 1775 in the then colony of Massachusetts. They just seem to be first to jump into the ‘good fight’. God bless them!

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Massachusetts Enhanced Adult Family Care (EAFC)

Caregiving: caregiver self-assessment questionnaire

American Medical Association

Caregiver Self-Assessment

Questionnaire

How are you?

"Caregivers are often so concerned with caring for their relative’s needs that they lose sight of their own wellbeing. Please take just a moment to answer the following questions. Once you have answered the questions, do a self-evaluation."

During the past week or so, I have...

 1. Had trouble keeping my mind on what I was doing.

     .......❑Yes ❑No

 2. Felt that I couldn’t leave my relative alone.

     .......❑Yes ❑No

 3. Had difficulty making decisions.

      .....❑Yes ❑No

 4. Felt completely overwhelmed.

     .......❑Yes ❑No

 5. Felt useful and needed.

     .......❑Yes ❑No

 6. Felt lonely.

     .......❑Yes ❑No

 7. Been upset that my relative has changed so much 

     from his/her former self.

     ........❑Yes ❑No

 8. Felt a loss of privacy and/or personal time.

     ........❑Yes ❑No

 9. Been edgy or irritable.

     ........❑Yes ❑No

10. Had sleep disturbed because of caring for my relative.

     .........❑Yes ❑No

11. Had a crying spell(s).

     .........❑Yes ❑No

12. Felt strained between work and family responsibilities.

     .........❑Yes ❑No

13. Had back pain.

     .........❑Yes ❑No

14. Felt ill (headaches, stomach problems or common cold).

     .........❑Yes ❑No

15. Been satisfied with the support my family has given me.

     .........❑Yes ❑No

16. Found my relative’s living situation to be inconvenient or 

    a  barrier to care.

     .........❑Yes ❑No

17. On a scale of 1 to 10, with 1 being “not stressful” to 10 

      being “extremely stressful,” please rate your current

      level of stress.      

      _______

18. On a scale of 1 to 10, with 1 being “very healthy” to 10

      being “very ill,” please rate your current health

      compared to what it was this time last year.

     _______

To Determine the Score:

1. Reverse score questions 5 and 15. (For example, a “No”

   response should be counted as “Yes” and a “Yes” response

  should be counted as“No”)

2.Total the number of “yes” responses.

 

To Interpret the Score:

Chances are that you are experiencing a high degree of distress:

• If you answered “Yes” to either or both Questions 4 and 

   11; or

• If your total “Yes” score = 10 or more; or

• If your score on Question 17 is 6 or higher; or

• If your score on Question 18 is 6 or higher.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Caregiver Self-Assessment Questionnaire

Caregiving: 'adapting' nature

I have been known to take a walk through the lunatic fringe during my 17 years as a spouse caregiver. Sometimes this is triggered because I think it is unfair what has happened and is happening to Patti. … Yes, I know that life is not fair, yada yada. Because she must be, Patti is more accepting. Because I do not have to be, I get more nuts about it.

 

Through our daughter’s childhood, Patti’s Multiple Sclerosis symptoms prevented involvement in the more physical family moments such as sledding in the neighborhood after a snowfall. This just seemed so wrong.

 

Following the Blizzard of 1996, while shoveling and shoveling snow, I had a vision of an opportunity to right this wrong. Perhaps it was a hallucination from exhaustion?

 

With the inspiration and energy unique to madmen I turned shoveling snow into building a sledding hill right in our front yard. Patti could roll right out of our house and SEE and FEEL A PART of a family moment that MS had too often denied her.

(Some readers have noted they have challenges using the AOL video display. For your convenience you can simply use the following links to view the video directly.)

You Tube

http://www.youtube.com/watch?v=XIOix5mSRog

Google Video

http://video.google.com/videoplay?docid=-4839940500523256070

 

I will not even attempt to share how much snow I shoveled onto sleds and dragged to build my hill and mini bob sled course. <grin> While the Blizzard of 1996 may have crippled the East Coast I on the other hand, “had a dream” and I was going to adapt nature.

... and what could be better in hot and humid July than three refreshing minutes of sledding?

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

Tags: caregiving, Multiple Sclerosis, Blizzard 1996

Caregiving: let the memories live again

Living with Multiple Sclerosis as a family, memories are pivotal. Patti’s MS symptoms of memory loss and cognitive impairment erase time. Megan, our daughter, has never ‘known’ her Mom as a walking person.

 

Catharsis can be wrapped in “Memories”, as in the musical “Cats”:

“…I can smile at the old days,

I was beautiful then.

I remember the time I knew what happiness was.

Let the memory live again…”

Aging home movies, many collecting dust, can turn a song writer’s lyrics into near reality. The past can walk and talk and look directly into you.

Several months ago I bought a LG DVD Recorder/Video Cassette Recorder (Model RC199H) to convert VCR tapes to DVD in one step. Just insert an old VCR tape in one side and a blank DVD disc in the other side and push the “dubbing” button. It is that simple, and works!

With pause, play, fast forward, and rewind you can actually edit what you choose to “dub” onto the DVD.

Three (3) feet of VCR tapes stacked one on top of another now takes up only the space of three (3) DVD-R’s and preserves the memories on those aging video tapes. Viewing is simplified because DVD search and cueing is ideal for this attention span challenged age.

Four score years ago my parents transferred tins of aging 16 mm and 8 mm film to VCR cassette tapes. Some of that footage “preserves” pre-WWII Washington DC as my future father then a high school senior shares some moments with his parents (my future grandparents) picnicking on the banks of the Anacostia River. To travel back 67 years and watch the river flow, old cars drive by, breeze blow through the tree leaves, a blimp float by and my future family mug for the movie camera is the closest thing to time travel I will ever experience.

 

Throughout this ongoing project, we are enjoying some interesting and shared family time letting the memories live again.

 

Caregivingly Yours, Patrick Leer

 

‘Caregivingly Yours’ Channel / You Tube

http://www.youtube.com/profile?user=daddyleer

Tags: caregiving, Multiple Sclerosis, memory, VCR tapes

Caregiving: 1994 Mother's Day

We are taking a little time travel with this entry back to Mother’s Day 1994.

 

Well intended teachers annually have students make cards or such for a Mother’s Day activity. Megan, our daughter, was always confronted with the uniqueness of living with MS as a family, because of MS symptoms her Mother was not like other Mothers. Patti could not see or read any ‘card’ and her symptoms and level of disability prevented her from most maternal relationships discussed in class. In Megan’s world her Father did all these things.

 

Recently converting some aging video tapes to DVD I rediscovered this “Mother’s Day video” Megan, as a Kindergartner, had made for ‘her Mom’.. Patti was in Pennsylvania and Megan wanted to send her a Mother’s Day “video card” she could “see” and enjoy on a mega screen TV.

Megan used her Sony drawing pad, a high tech Etch-a-Sketch, which connected to a TV and displayed her work on the larger screen. I simply stood back with a video camera and recorded. The artwork and narration is all our then young daughter.

 

(Some readers have noted they have challenges using the journal video display as a link. For your convenience you can simply use the following links to view the video directly.)

You Tube

http://www.youtube.com/watch?v=L0sUNNhyH6o

Google Video

http://video.google.com/videoplay?docid=6754117961090942972

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

Tags: caregiving, Multiple Sclerosis, Mother's Day, Kindergarten

Caregiving: 'country is watching'

Health care insurance impacts everyone especially caregiving and caregivers. There may never be a perfect 'universal' plan but it is long overdue for talk to evolve into action.

 

                         ---------------

'country is watching' Massachusetts insurance plan

 

“ …  Joyce Lawrence, who cares for the disabled and ill in their homes as a personal care attendant in Boston, says she has insurance now for the first time in years.

     "This plan is fantastic," says Lawrence, who pays $105 a month for her health insurance. "I didn't go to the doctor before. …"

 

“ … Although controversial, the idea of requiring individuals to buy health care coverage has "gained currency in the past few years," says Drew Altman, head of the Kaiser Family Foundation ... Proponents say it is one way to ensure that society spreads the cost of insurance across the sick and the healthy … “

 

“… Republican California Gov. Arnold Schwarzenegger has promoted it as part of his health insurance plan, as has Democratic presidential hopeful John Edwards. Another presidential contender, Sen. Barack Obama, D-Ill., has said parents should be required to carry health insurance for their kids. Republican Mitt Romney, also running for the presidential nomination, helped get Massachusetts' mandate passed in April 2006, when he was the state's governor.

 

"…The whole country is watching Massachusetts," says economist Paul Ginsburg at the Center for Studying Health System Change …”

                         ---------------

 

     Can ‘we’ put aside ‘me’ and see that our health care coverage crisis affects everyone?

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, health care insurance

Caregiving: an amphibious outing

Caregiving regardless of preparation or experience will hit you with the unexpected, even the unimaginable. 

 

Thursday we headed out for a family outing of an afternoon movie matinee of Disney & Pixar Studios’ “Ratatouille”. Shortly before and during our travel, thunderstorms drowned our area in 3 inches of rain.

 

Fording one stretch of road transformed into a stream, I heard Megan exclaiming from the back seat. The floor of our van was suddenly a pond with water sloshing and rippling back and forth. Fortunately she was wearing ‘crocs’ shoes. (perhaps a commercial endorsement opportunity?)

 

Patti’s wheelchair foot rests were keeping her shoes just barely above the water level. Patti’s cognitively impaired MS confusion often demonstrates a knack for comic relief as she observed, “Well, we needed the rain.” <grin>

 

We must have looked like some amphibious vehicle with gallons and gallons of water pouring out of our van as we drove onto higher ground and our ‘in-van’ pool drained back to the street.

 

Apparently our lowered floor for wheelchair accessibility is not water tight “when submerged” where the ramp joins with the floor.

Though not marketed for fording small streams and rivers, our Dodge Grand Caravan with IMS Conversion actually handled this surprise rather well. We passed multiple cars conked out and stranded in the flash flood stream.

 

Thank God for modern technology and our Hoover SteamVac. After returning home from the movies it sucked out 13 gallons of water still soaked into the carpeting. Making the best of a bad situation I then loaded in some rug shampoo and re-ran the SteamVac. The van carpeting has not looked this good since we bought it. 

Oh and by the way, WE ALL enjoyed the movie.

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, Ratatouille, Dodge Grand Caravan, IMS Conversion

Caregiving: "Heroes" by the Isaacs

A friend and parent caregiver forwarded this video. Thank you, Debbie!

 

A beautiful salute to caring performed by the Isaacs:

Caregivingly Yours, Patrick Leer

Tags: caregiving, Isaacs, Heroes

Caregiving: up a lazy river

Synchronizing an outing with care facility activities can provide a seamless and engaging day. For example this past Saturday rather than just arbitrarily take Patti out I paced myself to arrive after bingo. I found Patti rolling down the hall upbeat and particularly happy since she had won a game or two. 

 

We visited American MusicFest, but crowds began to confuse Patti. She enjoys scootering in wide open spaces (and at maximum speed) so we simply shifted to ‘plan B’ and cruised the banks of the Susquehanna River.  

 

          “Up a lazy river by the old mill stream"

         

          "Lazy river in the noon day sun"

         

          "Linger awhile in the shade of a tree"

         

      "Throw away your troubles, dream with me.”

         

“Lazy River” by Sid Arodin & Hoagy Carmichael.

 

When a day begins and ends with the maximum safety and attended care of a 24/7 care facility but can be filled with the best of both worlds it can be a beautiful day for all.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, care facility, American MusicFest, Susquehanna River

Caregiving: CARES / U of North Carolina

As a caregiver I’m honored to have this journal, “Caregivingly Yours” recently added to the “resources” links of the Center for Aging Research and Educational Services (CARES) of the Jordan Institute for Families, School of Social Work, University of North Carolina. “… Dedicated to serving social work practitioners and decision makers who work with older and disabled adults and their families.”

 

Reading from their Spring 2007 Adult Services Practice Notes (ASPN) I could not help but notice, remember, and “feel” some excerpts:

 

“Negotiating the change from caring for people at home to caring for them in a facility has its own steep learning curve and emotional heavy lifting …”

 

“… Family caregiving doesn’t end with the care recipient’s entry into a facility, and making the transition can be difficult not only for the people making the move but for the caregivers. The transition usually brings with it new challenges and stresses for everyone concerned. …”

 

Kudos to the University of North Carolina! CARES is addressing and making available knowledge and learning that IS and WILL BE needed for families everywhere.

 

AND …

 

I am neither that naive nor vain to believe this journal’s growth and recognition has to do with my attempts as a wordsmith. It is “our family’s story” of living with Multiple Sclerosis, joined by the cyber neighborhood of the hundreds who read each entry, the dozens and dozens of emails, and the wonderful handful who comment regularly. Any link to “Caregivingly Yours” is a welcome to this caring neighborhood.

 

Caregvingly Yours, Patrick Leer

Tags: caregiving, CARES, Multiple Sclerosis, Jordan Institute for Families