My Mother’s Keeper

This blog [I am My Mother’s Keeper – A Job I Cherish!] reminds me, somewhat, of my mother’s last few years.

Momma about 1940

Momma about 1955

Momma (left) in Nursing Home about 1977

It certainly is a cautionary tale for all relatives, friends and caregivers. It can help prepare for what is, all to frequently, the future of their lives. No matter how many siblings or children there are, or how deeply they are (or are not) involved, care-giving usually devolves down to one person or one family group.

With the recent admissions that there really are to be “Death Panels” related to Obamacare, relatives and friends more and more will have to be assuming care-giving to the elderly and chronically ill. This is a step backward from our current system, but actually could be a step forward from the impersonal care currently given. It retreats to the days in which family and friends were closer and more involved with the elderly and chronically ill, but could be a step forward to more hands-and-hearts-on care. Instead of living one’s last days among a group of strangers, one can live at home with loved ones close by. There would seem to be more opportunity for saying all the things that need saying before someone dies.

Yes, there is the problem of “too much burden” on the home care-givers. Smaller families and individuals will be forced to rely on friends, acquaintances, Churches and volunteer groups. Is this bad? The transition to more family care-giving will be UGLY! But the final “product” has the potential to be very good.

“Author and organizational consultant William Bridges developed a model that explains the process of transition. This three stage model focuses on the adjustment that people make when they are going through a transition. Bridges states that “transition starts with an ending and ends with a beginning.” [Bridges’ Transition Theory in imjoeboe blog].

Bridges’ Transition Theory

It’s that “neutral zone” that can be UGLY! Change is always difficult. Aging and chronic illness are difficult – and can be UGLY! Surmounting those difficulties and the ugliness can become something to look back on with pride – after the grief! Grief is something I will deal with in another post.

Related articles

• Tips for Coping with Chronic Illness (psychcentral.com)
• 15 Ways to Stay Sane Caring For an Elderly Parent (johnshore.com/)
• Living with chronic illness beats the alternative (healthsass.blogspot.com)
• Caring for Aging Parents (caring-for-aging-parents.com)
• Coping With A Chronic Illness (e-prescribe.biz)

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Helps Getting Dressed

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I was researching Multiple Sclerosis after a discussion about it with Himself. Like RA, MS is an autoimmune disease. Unlike RA, it is pretty much confined to the neurological system, but it wreaks havoc there. It inexorably progresses until the patient is pretty much bed-ridden. But I was fascinated to find an article that discussed in specific detail the kinds of daily accommodations people with MS must make. Many of those accommodations are things that would help those of us with RA. So I thought I would discuss these in a series of posts. This first one is about getting dressed, and the things we can do to adapt to decreasing coordination and strength.

• Get dressed while sitting in a chair that has arm rests. This will help you keep your balance. 
  • Note from Turtlemom: this will also give you a place to rest your arms to reduce fatigue.
• Roll from side to side to get pants over your hips. You can do this while sitting in a chair or lying down on your bed.
• Wear clothes that are loose-fitting and have elastic waistbands.
• Choose wrap-around clothing instead of the pull-over type. Also choose clothing that opens in the front, not the back.
  • Note from Turtlemom: Finding bras that fasten in the front – that actually fit and give support – is very difficult. Especially for those of us who are, shall I say, “over-endowed.” I have gone through one brand and style after another. My search continues…
• Wear clothing with large, flat buttons or use Velcro closures.
  • Note from Turtlemom: I’m not to the Velcro closure stage, yet. I do have jackets and coats with large buttons – they make a BIG difference!
• Use a buttonhook to button clothing.
  • Note from Turtlemom: As I mainly wear tee shirts and other over-the-head shirts, this is not a problem, as yet.
• If you have shoulder weakness, use a dressing stick to get your coat or shirt on and off.
  • Note from Turtlemom: This I may have to invest in during 2012.
• Use a zipper pull or attach a leather loop on the end of the zipper to zip pants or jackets.
  • Note from Turtlemom: OR, use elastic-waist pants and skirts. I do have a loops either of leather or braided thread or string on the two jackets that have zippers.
• Use devices such as a sock aid and a long-handled shoehorn for additional assistance.
  • Note from Turtlemom: Now, I do have a Carex Sock Aid that I got through Amazon that I use during flares. I will say that it was especially helpful for about the first 5 weeks after  I had my knee replaced back in September 2011. With me mostly wearing Crocs, I usually don’t need a long-handled shoehorn. Occasionally, though, I wear athletic shoes, and I use elastic shoelaces and my long-handled shoehorn (purchased from my local Red Wing Shoes Store) at those times.

I can do many things myself with just a little assistance from the ingenious devices available from the many suppliers that abound on the internet and through paper catalogs. Here are a few of my favorites:

The Wright Stuff (Daily Living Aids Page)

Allegro Medical (Dressing Aids Page)

Buck and Buck

Disability Products (Dressing Aids Page)

Last, but not least, there is Amazon.com! They have an amazing amount of disability assistance products in their Health & Personal Care section.

I will admit that the clothing leaves a lot to be desired. The women’s clothing is all big flower prints or in “little old lady” colors. But looking at the adaptive methods used, I can get my daughter or one of her “sewing friends” to make one for me. I can go to little craft shops and find things to use to attach to zippers that I can grasp and pull. There are also hooks I can use to attach the pulls.

Joann’s,

Hobby Lobby,

and Michael’s

are all good sources, and the people there are friendly and helpful.

One last thing – check the non-disability websites, too. Their products are considerably cheaper, and the products usually don’t look like the disability clothing lines – more stylish, etc. I would only get the more expensive disability clothing if I couldn’t find anything more stylish and, perhaps, less expensive, that could be adapted.

Please let me know of adaptations you use when getting dressed!

 

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Life Accommodations

“Alas, physical energy must be conserved, but the engine inside the soul revs up just the same. Every day, I hear people with RA talk about the frustration of these restrictions and limitations. If physical energy remains limited, maybe we can become limitless at something else – like compassion or patience or joy.” Quote from RA Warrior blog. http://rawarrior.com/severe-rheumatoid-arthritis-can-leave-you-stuck/

We RA’ers have very limited energy reserves. This keeps us from doing many of the things that tend to define us. In my case, it has prevented me from attending Church. Now, those who “knew me when” know that my favorite place to be was and is in Church. The Ol’ Curmudgeon and I were there for most of the services. Because of our distance from the Church, we usually did not attend Vigil, but were there for everything else.

As we got older, we had to do more “picking and choosing” of the services during Great Lent and Holy Week, and that was most disappointing. After the Ol’ Curmudgeon’s first angioplasty, he was unable to direct choir anymore, and was unable to attend the Liturgy every week – we managed about every other week. Meanwhile, my energy reserves disappeared, and I was diagnosed with fibromyalgia – but we now know what I had was really early RA. I had to leave services earlier and earlier.

As a person who has always been very adaptive – I could adapt to nearly anything – I looked around for ways to retain and grow my Orthodox Christian faith while recognizing my limitations. I found them in books, on CDs and the internet. It has been disappointing to not find help on TV or DVDs, but clips on YouTube are helpful.

What has been most helpful? In addition to the Jordanville Orthodox Prayerbook, the Old (Orthodox) Believer’s Prayerbook has been wonderful. The translations are very beautiful and not awkward. There are many additional prayers not found in other prayerbooks. Another book is Prayers by the Lake by St. Nikolai Velamirovic. This book is also available on-line. The books by Johanna Manley (The Bible and the Holy Fathers for Orthodox, Grace for Grace: The Psalter and the Holy Fathers, Wisdom, Let Us Attend: Job, the Fathers, and the Old Testament, and Isaiah Through the Ages have been of inestimable help. The “Book of Akathists, Vol I and Vol II, from Holy Trinity Monastery in Jordanville is wonderful. I also have the Lenten Triodion and the Festal Menaion by Archbishop Kallistos and Mother Maria. The translations are delicate and euphonious. They evoke the sense of deep joy inspired by actually being in Church. For daily devotions, The Prologue from Ochrid (mine is the early, first edition, in 4 volumes that could be purchased individually – made it easier to purchase) is essential to me. The Menologion-3, A Troparion and Kontakion reader for Windows, with Lives of Saints and daily Bible readings, is extremely helpful when time is short, as is Horos (St. Anthony’s Hours of Prayer), a computer program that pops up on the Liturgical Hours with a Psalm from that service.

I have downloaded many videos from the internet and converted them into MP3s so I can listen to them on my SansaClip (a very small MP3 player) as well as watch them on my computer. I also have converted some of my particularly treasured Orthodox music from my CDs to MP3s to listen to when I’m away, or want to listen when my Ol’ Curmudgeon doesn’t want to listen.

What do I wish for? I want St. Nicholas to bring me (and thousands of other Orthodox shut-ins) live, streaming videos of the Slavic-style Divine Liturgy on a weekly basis. I often watch the GOA live, streaming video of the Divine Liturgy, but my spirit longs for the Slavic music and English. None of the CDs really suffice for this.

Of course, I pray for healing – both for my Ol’ Curmudgeon (who isn’t doing real well energy-wise following his third angioplasty 2 years ago) and for me. Until God does that, we continue to adapt. But we are aware that, like many other people, our “golden” years are much less than “golden.”

After I was trapped in the bathroom (couldn’t turn the dratted handle because my hands were flared, couldn’t use my forearms because of the angles involved), my husband had lever handles installed house-wide. It was well worth the cost. On really “difficult” days, I put a “pull” on the handle and Emmy opens it for me!

Himself and I also planned out and had a new kitchen installed that lets me sit to do most of the things I need to do, and is big enough for him to do what he needs to do – finally! (My friend, Denise, in Savannah, would LOVE this kitchen!) The renovation was trying, but we survived. Energy-wise, we are still recovering – 2 months after completion.

We are gradually re-defining ourselves, taking our physical limitations into consideration and adapting as much as we can in a positive manner. RA continues to eat into my joints, and makes various tasks and activities more difficult.

We accommodate to our handicaps and make each day as good as we can make it, thanking God for His grace in giving us the ability to adjust, improvise, adapt, and accommodate (if not overcome) our handicaps.

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Two Leg Lifters from The Wright Stuff

I have to say, I’m very grateful to The Wright Stuff for allowing me to showcase some of their products that I find very useful. This one, the Leg Loop Leg Lifter, is one I’m very interested in because my knees and hips are getting really painful and stiff. They are making some crackly sounds, too. I’m having some problems getting in and out of the car from time to time, too, so I definitely think one of these is in my future.

I prefer this one to the others I have looked at because it doesn’t require hand strength. I can slip my foot into the foot loop, and slide my arm into the inaccurately named hand loop. So I will save my hand joints and use my larger joints to help lift my leg into the car. That’s where I most need it. But if you have problems with lifting your legs onto a wheel chair foot rest, or lifting your legs into bed, this device will shortly become your best friend! It’s a great idea for those with hip replacement or knee replacement, or for that waiting period before you can have the surgery.

The manufacturer has made the middle of this device rigid – almost like a pole. This gives a bit more control than just a strap.

Leg Loop Leg Lifter

Although the picture shows the model using his hand on the rigid portion, that is not necessary. It can be used simply by resting the hand loop on your forearm. You can also brace the loop arm with your other forearm to get a double-arm effect.

Another one, the Triple Loop Quad Leg Lifter may be appropriate, too. It does not have the rigid mid-portion of the Leg Loop Leg Lifter which is the aspect I, personally, find more appealing.

Triple Loop Quad Leg Lifter

The Triple Loop Quad Leg Lifter is designed for quadriplegics, and has three loops so one can choose the loop or loops most helpful for you. Although designed for quadriplegics, it can be very helpful for those of us who simply have weak legs and hands.

The Wright Stuff has a number of other styles of leg lifters. If these two don’t look like they will work for you, perhaps one of the other styles will.

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Fingerless Gloves

I remember seeing pictures of people with fingerless gloves when I was a child. My impression then was that these were poor people who didn’t have the money to buy “real” gloves that weren’t worn out.

Well, things are different now. I’m more grown-up (ya’ think?) and I frequently wear fingerless gloves. They allow me to keep my hands, and at least the bottoms of my fingers, warm. This is important for those of  us with rheumatoid arthritis – keeping joints warm reduces pain and stiffness while increasing the ability of the joint to move and be used with much less pain.

We keep our home fairly cool, because my husband overheats very easily. As we both say, it’s easier to put stuff on than take stuff off. So I use fingerless gloves frequently – mainly in the winter, but frequently in the summer when the AC is on.

I ordered mine from Amazon. They have many different styles and colors during the fall and early winter – this is the best time to buy. They are not overly expensive, and if you need other items from Amazon, group them so that you will have no shipping. This is cool!

Fingerless gloves in my favorite color.

They make typing a lot more comfortable. When I’m not typing, or using my fingers, I frequently pull the finger-stubs of my fingerless gloves up to cover all of my fingers. You may notice that these are getting frayed from being used a lot! It’s about time for a new pair. I like this style, so I will stick to it. I may get the Rainbow or Fuchsia ones. I like happy colors around me to make me smile and feel good. And THAT’s good for my arthritis, too!

Mine are long so my wrists and lower forearms are kept warm, too. You may want shorter ones like THESE or THESE.

OR, you can simply search the web from Google using the search term: fingerless gloves. You will get hundreds of thousands “hits.” All colors and lengths. There are also patterns for knitting your own – if you or someone you know knits.

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Press Controls – Hurt Arthritic Fingers!

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There are several things in homes and elsewhere that require you to press your finger against them to cause an action. The elevator comes, the oven is turned on, the dishwasher is turned on. There may be buttons or there may be a flat surface with areas indicated for pressing.

I don’t know about you, but most days, now, my fingers don’t want to do that. If I insist, my fingers YEEE – OUCH!

A few years ago, my husband (AKA the Ol’ Curmudgeon AKA Himself) made a wooden mortar and pestle for crushing herbs and spices. It worked, but he eventually obtained a ceramic mortar and pestle (not as big as Julia Child’s, of course!) and retired the wooden set. It’s rather pleasant to the eyes, so I insisted we keep it. (More about keeping things later.) I was looking for something to use to press the various controls when Himself suggested getting that pestle and using it.

Wooden Pestle

Wooden Pestle in Hand

As you can see, it is about the right size – at least for now. I can still grasp it. Eventually, I will need an object somewhat larger in diameter. But, as I said, for now, I can use it.

Oven Controls

Our oven has the kind of controls I mentioned.

Pestle Used on Oven Controls

And this is how I use it on the oven controls. Being rounded it doesn’t harm the surface of the control. (It’s hard to take good pictures of myself doing things, but Himself cooks and doesn’t “do” photography!)

Hot Water Dispenser

The Panasonic hot water dispenser makes Jim-dandy hot water for making my tea each morning (I drink two huge travel cups of it daily). But the controls require pressing.

Using Pestle on Hot Water Dispenser

Using Pestle on Hot Water Dispenser – 2

The wooden pestle works great on this appliance, too.

I also will use it on the dishwasher (on the infrequent occasions I actually “do” dishes), and the washer and dryer, as necessary.

You can also use the handle of a plastic utensil or a tableknife. They work. I’ve tried them.

Happy innovating! Remember to Think Outside the Box!

 

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Improvise – Adapt – Overcome!

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Those of us who develop a handicap or disability often find ourselves unable to function in the non-handicapped world. Tools, kitchen utensils, even toothbrushes seem to defy our ability to use them. Perhaps others in our families just don’t understand why we can’t continue to function as usual.

My handicap is rheumatoid arthritis (RA). I am blessed to have a mild-to-moderate case at this point. I am careful to add the “at this point” because I never know from day to day how I will be the next day. I could suddenly find myself completely unable to walk, to use my hands, to raise my arms. And so it goes. There is the pain factor – not to be sneezed at – and the fatigue factor – another misery, as if the RA patient didn’t have enough to worry about.

My motto is a saying that my ex-Marine husband uses a lot: “Improvise, Adapt, Overcome.” I need to Improvise and Adapt in order to Overcome the disabling effects of my RA.

So this blog (which supersedes “Ancient Reptile”) will detail the various things that can be used to Overcome disabilities. There will be a new post about twice a week, sometimes more often, and frequently accompanied by photos to show how something works in the “real” world of one handicapped / disabled woman.

There will be, I hope, some guest posters, who will share their accommodations to their disabilities. In addition, I hope you, the readers, will contribute comments that will include suggestions for items to use or ways to do things. If you have suggestions for how this blog should be arranged and organized, I’m all eyes (and ears)!

It will be several days before the next post, but, in the meantime, I hope you will subscribe via RSS or e-mail.

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