Thursday, May 26, 2011

Gifts to share- Part 2 – Keeping eyes off ‘self’ helps keep a positive perspective throughout the aging process

Marlu and Buddy’s story (Part One) was an example of making volunteerism work despite and intense level of caregiving and cognitive decline volunteer, which I called Level 5 caregiving. For the purposes of comparison, I’ve broken down other care levels with tips on how to encourage the senior you love to continue to give back despite challenges faced by having an aging body.

Care Level 4 : Caree has mobility issues, may or may not drive.

Just because a senior needs a walker, cane, or other mobility device to make movement easier and safer, doesn’t mean his or her mind and hands can’t perform volunteer tasks. Use those mobility aids to help you get out and make a difference! Look for jobs that don’t require great deals of movement. Many organizations welcome the help of someone to sit down and write, type, or address newsletters, or other clerical tasks. Sorting books to put on carts to be returned to the shelves at a library or being a Children’s Storytime leader at the local library might be a perfect fit.

Care Level 3: Senior has vision, hearing impairment, may or may not be driving.

Many seniors withdraw from social interaction when hearing and visual impairments are everyday challenges. Just as family members and the senior find coping strategies, those can be applied to volunteer settings too, enabling your loved one to stay active and involved.

 So what do you do at home when vision or hearing is a challenge?

For the visually impaired, make sure the lighting in the volunteer venue will work for the tasks at hand. If necessary, find magnifying tools to help with tasks. For example, a senior with VI (Visual Impairment) can still help address invitations for a fundraiser but may need to use pre-printed labels instead of writing them by hand. If reading to children in an after school program, a magnifier may be the answer. The tool will also fascinate the children and teach a lesson or two. “I may need help, but I still want to share with you,” is a powerful message that doesn’t have to be spoken.

My mother lost most of her vision in her early 60’s but still had much to offer. Though she couldn’t drive, or sew anymore, she joined a crafting group and helped stuff the animals they made for children at a local hospital. In her case, she received an additional benefit with the social connection and friendships in the sewing group.

When hearing is an issue, make sure the work takes place in an appropriate setting. Background noise and the acoustics of a room may cause problems, particularly if the volunteer needs to hear directions or responses from others regularly. If hearing aids are used, this can still be an issue, as hearing aids may need to be adjusted for use in different locations. Sometimes moving the site where the volunteer work is done
(addressing envelopes at home rather than in a noisy office) helps. The type of work a senior can do may or may not be affected by hearing loss as long as the directions for the task can be offered and clarification gained as need. Make sure written instructions follow any given orally.

Regardless of limitations a senior may feel, look at what areas of life (and in the home) are not physically challenging and try to find a community connection for the same or a similar activity. If sorting and folding laundry is a doable task, consider volunteering at theatre group needing help with costume inventory. If gardening and planting flower beds is therapeutic at home, try offering to put in some beds at another location - maybe even doing it for another senior who couldn’t do it for himself.

Up next: Conquering the driving issue when encouraging your caree to stay active with volunteering.

Wednesday, May 18, 2011

Gifts to share – Part 1: Keeping eyes off ‘self’ helps keep a positive perspective throughout the aging process

Marlu Taylor has helped her
husband continue to give back
 to others despite his 7 year
 battle with Alzheimer's Disease.
Everyone has gifts. Using those gifts to help others in turn helps seniors feel productive at a time in their lives when their bodies often feel limited.  In fact, volunteerism can help seniors not only stay mentally stimulated but help slow the onset of frailty (see article).

Even if the time comes when a senior needs to stop driving, it is still possible to be an active volunteer. For caregivers, it may seem one more thing to do on an already strained scheduled, but with a bit of initial effort to coordinate activities, the long term benefits for both caree and caregiver can be great, regardless of the level of care your caree requires for himself. The positive effects of giving to others, despite physical limitations, are contagious and powerful.

For a few posts, I’ll break down senior volunteerism into categories based on care levels, starting with those who have the most intense care needs.  
Care Level 5 (intense): Senior has cognitive issues, does not drive

By the time cognitive abilities are an issue for daily living, many caregivers give up the idea of encouraging their loved one to be involved in the ‘outside’ world. Daily living seems enough of a struggle. But there are ways that seniors with memory issues can give to others and feel good about what they can do, receiving a vital boost to their self-esteem and perspective on life. The positive effects of giving to others, despite physical limitations, are contagious and powerful.

The following example is offered with my sincere thanks to Marlu for sharing with me. It helps us all remember that an important job for caregivers is empowering our caree, and keeping our eyes open for the blessings that come when we do.

Buddy and Marlu Taylor, of Spartanburg, SC have been dealing with the affects of Buddy’s Alzheimer’s for more than seven years (See " Love's lasting embrace can overcome life's obstacles," by Kim Kimzey). Marlu has been dedicated to keeping Buddy informed, but also active. Despite his diagnosis, he continued doing volunteer work outside their home as long as he could. He tried volunteering at the local hospital, delivering newspapers, but the room numbers, locations, and managing the task weren’t a good fit. Then he found his ‘job’ at Animal Allies, which in turn made as much impact on the staff there as it did Buddy. 

 “It’s not just one way. The people Buddy worked with felt good that they were helping him feel productive. He’d go to his ‘job’ every day and it meant so much to all involved,” explained Marlu.

Then Buddy started painting “memory rocks.” The activity helps him with hand/eye coordination and Marlu reminds him that what he is doing helps others learn. The rocks are painted purple and white – the signature colors of the Alzheimer’s association. Marlu shared the rocks with the SC Lieutenant Governor and others advocating for funding for respite care vouchers.

Buddy carries the rocks with him and gives them away. 

Marlu has been surprised at the reaction of the recipients and the power his gifts hold.
Buddy Taylor's painted rocks
decorate the bird bath area in the
 Memory Garden at the
Alzeheimer's Association office in
 Spartanburg, SC.  His gift to the
garden serves to remind visitors
that everyone has something to give.

You can see the expression on their face and how clearly they  
are touched. It’s not about
what is offered.
They realize the significance of Buddy still wanting to offer something to another person despite his own limitations.”

Now Buddy needs extra support to paint the rocks. Placing a  
canvas under the rocks he can no longer hold, Buddy is painting
canvasses which will one day be turned into Christmas presents.

As Marlu explains, “It's okay that he can't do some things, it's about what he can do.  It’s all about having a purpose in whatever way works.”

Friday, May 13, 2011

When Reality Strikes - Accepting and Managing the Hurt

Your lifesaver in difficult times may
be different than the one your caree uses.
That's okay!
When a loved one is dealing with a major crisis, we read the books and pamphlets, we Google. We listen to the doctors and think of people we know who have dealt with those issues before. We gather the information and prepare. Even the worst diagnosis can seem manageable for a while - when it’s not in your face.

It’s important to remember that no number of books or conversations with friends will change the harsh reality of when what you read is what really happens to you. Sometimes it’s bad. Sometimes it hurts. And sometimes the caregiver can’t make it better - at least not right away.

For those of you who are parents, you likely know what I mean. It’s a harsh reality when parents feel the sting of the pain they can’t take away from their child. It’s often the same with the caregiver/caree relationship.

Some caregivers grab a life saver by looking for the logic of a situation.
Well, that’s what the book said would happen. Let’s get beyond this.
It’s only temporary.
It’ll be easier the next time. We’ll know what to accept.

Are those platitudes we are throwing out to our carees? They may sound like it - empty, and hollow, but really, they are lifelines we’re throwing out to ourselves as much as our carees. We want to believe something other than what is right now, especially when ‘right now’ hurts.

We can’t make the hair grow back. We can’t force the sickness to stop. We can’t bring the energy back.

So what can we do?
Call it what it is.
It’s bad. Sometimes just acknowledging how bad we feel gives us the space to deal with the pain and move forward. Sometimes it takes a while. But one thing that is constant in all of it is change. The worst will change. Sometimes it takes longer for the caree than the caregiver to accept a new reality. Sometimes it’s the other way around.

Once we allow the reality to settle in, we can take some actions to ease the hurt we and our caree feel. Likely, there will be a difference between how a caregiver deals with the pain of reality and the caree does. That’s okay, as along as both are willing to give each one the space to feel what they feel. Trying to force your caree to share your lifeline just isn’t fair. It’s yours. Try not to push, but just be there in whatever way works.

The best thing you can say or do when times get tough? Sometimes, nothing. Sometimes just hold your caree’s hand, or remind them that you believe the hurt, the baldness, the sickness that are part of the fight are worth it - they’re worth it. And if they’re not ready to hear it, that’s okay.
When your caree does reaches for a lifesaver, whether it’s the one you offer or one they find on their own, your job is to help them hold on to it.

Friday, May 6, 2011

Blood Counts and Levels - Part 2 - A Time SAVER!

I recently spoke with Karlene Fenderson, a center manager for LINCARE and found what all patients and caregivers need - a TIME SAVER!!  She was sharing about an in-home PT/INR testing kit/program that her company offers in partnership with their sister company,mdINR.

In Part 1 of this series, I mentioned that PT/INR levels monitor the thickness of blood.

For some, coming in weekly or even less frequently, for just a finger stick, is a hardship. Think of managing a wheelchair, arranging transportation, trekking across town, and waiting in the office for both the check to be told ‘stay on your current dose.’

Though sometimes there is a regular doctor checkup and bloodwork to do be done at the same time, there are still plenty of times when only the PT/INR needs to be checked.  Now think of sitting in a chair at home, doing your own finger stick (similar to a diabetic’s glucose monitor) and making a phone call report your results, then getting a call back from your doctor with any directions for change in medication. The device used is the same as those used in doctors’ offices and through home-health agencies. Wow - much easier with great amounts of time (and gas money!) saved by in-home testing. 

This wasn’t an option when I was caring for my parents, but it is now, and, it’s covered by insurance. Would I use such a service now - you bet! So what happens to make this work?

1.“Medicare wants a patient to be on the therapy for three months monitored by a physician before starting to test at home to ensure safety, then provide for weekly testing,” explained Fenderson.

2. An order is needed from the physician and authorization from the insurance company is received, then the service started through Lincare and MdINR (or another providing agency). They get the approved tolerance range for the patient from the doctor. (note: some in-home testing companies use doctor ‘norms’ rather than those specific to the patient which may cause additional follow up calls).

3. A clinician comes to the home to give training to the patient and/or caregiver(s). (check how long it takes to schedule this)

4. When the patient tests, he calls in (or reports online) the results, and if outside the tolerance range for him, contact is made through the physician’s office for directions for change in medicine dosage. (Check to see the specific follow up plan for the company you consider.)

5.  If a patient doesn’t call in results each week the monitoring company should follow through to check on the patient. (Ask the company you are considering how they follow up and what happens if you don’t call in).

 “One strength of the Lincare MdINR program is that we’re connected to 1200 centers nationwide,” Fenderson explained. That means you can take your test while on vacation and can receive the same follow up and feedback without having to plan your vacation time around a trip to the doctor’s office for just that one test.

Author’s note:  Please know I received nothing from Lincare or Md/INR to mention them. I simply heard of a resource and wanted to share it with you. I encourage you to do your own research too and consider all options for in-home testing to find what will work best for you. 

Tuesday, May 3, 2011

Blood Counts and Levels: Part 1

Knowing important information stored in
your blood can help you be a better
 partner in your own care.

It’s something extremely important to our survival yet we rarely see it and certainly hope not to... our blood.  Depending upon what medical condition you are managing as a patient or caregiver, it’s important to find out just what the doctor is looking for when drawing all those vials of precious fluid from your veins!

Why should you? Aren’t "they" keeping track of it all?

I’m big on empowering patients and caregivers with information. They spend more time in the front lines of their own care than a doctor ever can. An educated patient and caregiver are a vital link in successful medical care. 

As people age, they are more likely to have issues with blood thinning or thickening. For people with DVT or Deep Vein Thrombosis; Atrial Fibrillation (A-Fib); Pulmonary Embolism; mechanical heart valves, and other medical issues, it’s extremely important to monitor PT/INR levels. In layman’s terms, that’s the thickness of the blood related to its ability to clot. If it’s too high, the blood is too thin and there are higher risks for bleeding. If it’s too low, the blood is too thick and clotting can happen when it’s not supposed to. Monitoring these levels and treating with what many call “Coumadin Therapy” reduces the chance of strokes and heart attacks. Coumadin is the usual drug given to thin the blood. The generic is called Warfarin. Various amounts are given determined by the monitoring of the blood levels. When a doctor wants the PT/INR levels monitored, it’s VERY important to follow through. By doing so, you reduce the chance major health crises.

Another important time to know what’s happening in your blood is when receiving chemotherapy. Blood is drawn quite often during cancer treatment. You should know why. If your white cell count drops, you’re at higher risk for infection. Your doctor or nurse should tell you when to stay away from crowds, the grocery store, or sadly the grandbabies, but if you monitor your own white count, you can ask if it’s low enough that you need to be more cautious in other circumstances the doctor may not consider.  Let’s face it - how likely is it for the doctor to ask if you’ve bought tickets to a play at the theatre and that may not cross your mind as a place as germ filled as a grocery store. You might not even remember it right away, but telling the doctor of any 'unusual' (nondaily) plans will help him/her plan your care. And yes, people having chemotherapy do such things when they feel up to it! But remember, though you may feel able to go out to a play, your blood may not be ready. And it can’t tell you.

White blood cell counts aren’t the only things that doctors look for, so when you have your blood drawn, ask for details. It empowers you to be a partner in your own care.
Golden Nuggets for Caregivers:  Ask for a printed report of blood tests. Make notes about what are the big things to look for and ask what all those numbers and letters mean. Believe me, a report generally looks like an advanced level algebra problem with numbers and letters all over the place, so ask for explanation. Put copies of the reports in your caregiver’s notebook. If your doctor’s office won’t give you copies or explain them to you - it just may be time to find another doctor’s office. Now, if it’s the lab staff who won’t provide it, don’t leave your favorite doc - just let him or her know what you want and address the issue through the office management.