Category Archives: Caregiving – General

Two hospice misconceptions – according to an MD

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I occasionally check out the blog of Dr. Wes Fisher, an internist and cardiologist based in Illinois. He posted about two misconceptions commonly held about hospice back in January 2010. The first is thinking that the hospice is going to “save you from the day to day challenges of caring for your loved one.” (There was some discussion along these lines in a recent post here with the subject “Hospice questions.”) The second is thinking that hospice will come in and make lots of revisions to a medication regimen.

This blog post mentions two resources:

* a government publication on Medicare Hospice Benefits. See:
http://www.medicare.gov/publications/pu … hosplg.pdf

* a Los Angeles Times article from 1/22/10 titled “Hospice care helps patients and loved ones,” which I think is a terrific overview of hospice. See:
http://www.latimes.com/features/health/ … 1030.story

Here’s a link to the short post by Dr. Wes Fisher and the full text:

http://drwes.blogspot.com/2010/01/hospi … tions.html

Posted by Dr. Wes
Monday, January 25, 2010

Hospice: Some Misconceptions

The Los Angeles Times had an earlier starter piece on hospice care recently with some remarkable figures:

Over the last 25 years, the number of Americans turning to hospice for end-of-life care has climbed dramatically — from 25,000 in 1982 to 1.45 million in 2008, as more and more people choose to spend their final days in the comfort of home or a patient facility with a home-like environment rather than in a hospital pursuing aggressive treatments.

I have been involved with hospice twice now – once with my father several years ago, and recently with my mother-in-law who just died of pancreatic cancer.

There are many references out there about hospice, and for a general overview for those thinking about hospice for themselves or a loved one, I’d steer you toward this introduction (pdf), provided by the government. Through both processes I have had a chance to see several misconceptions about what hospice is and how it works for patients who elect to stay at home during their last days. I cannot speak to inpatient hospice services since my family members have not elected to use those resources. For those that might not have a lot of family around, inpatient hospice care is probably a better alternative.

In many ways, hospice brings together a team of support personnel: doctors, nurses, chaplains, social workers, etc. to support the patient and their families through this difficult process, but there are some preconceived ideas that might not be clear to those who elect to go the stay-at-home route:

* First, hospice is not the cavalry, swooping in to save you from the day to day challenges of caring for your loved one. They can mobilize the equipment, the 30-60 minute visits by their staff (I am unaware of doctors making house calls, but trained nurses assess the patient then relay the status to the treating doctor), or arrange for help bathing and dressing the person occasionally, but they will NOT be there 24/7/365 when things get tough to wipe their bottoms or give them their medications. They’ll teach you how to do things, but at home, it’s still up to the caregivers.

Not that this is all bad. There is something very therapeutic about reconnecting in such an intimate way with someone you love. Still, it’s the constancy of this care, even in the middle of the night, can take it’s toll and create intense exhaustion and depression in caregivers, particularly when there is only one caregiver performing these duties. But being at home affords other familiar touches that just aren’t replicated in inpatient facilities. Probably the biggest smile we received from my mother-in-law was when be brought our therapy-dog cocker spaniel up on her bed (she loved that dog) – a no-no at most inpatient facilities.

* Medication revisions are more limited than I expected. It was interested to see family members acquire a regimented approach to medication administration at first. Through no fault of their own, it was not uncommon to observe that every medication was ultimately trying to be forced down the gullet of their loved one in attempt to be conscientious caregivers. No one unfamiliar with medical care and medicine rarely realize that perhaps many of those medications become superfluous during the dying process. No one wants to withhold care initially, we’re trying to help! But as their loved one’s renal and hepatic function decline during the dying process, doses of medications (particularly narcotics or steroids) might need to be reduced slightly to maintain a certain level of alertness or to avoid drug-induced delirium from complicating their loved-one’s care. Not uncommonly, drugs previously thought critical to the well-being of their loved one suddenly become less so or completely unnecessary. Obviously, making these decisions is very tough for lay people when you’re in the trenches of day-to-day care or when a loved one can no longer swallow. I found this was a source of considerable angst. Remembering to communicate with the hospice nurses during their visits or calling to ask about these issues can go a long way to allay any apprehensions and misgivings, should this occur.

In all, hospice was a very nice experience for us, but the experience was more about the family rallying to provide care than hospice providing the day-to-day care. I am aware of others who have found these limitations of what was offered at home by hospice to be an eye-opener. Many were caught off-guard about the need for their involvement and the depths to which their hands-on care would be needed. Hopefully now, a few more people will understand what’s required and not feel so guilty about the care they deliver when they go through what we did.

-Wes

ElderCareLink, interviewing agencies, working with aides

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I saw this post on an online support group recently. It’s about a website called ElderCareLink (see eldercarelink.com) that is a referral network of care agencies. The website also has articles on some good topics: Five Tips for Choosing An Assisted Living Facility, When is the Right Time for Calling Hospice Care, and Why You Need a Healthcare Directive.

The post also gives some suggestions for interviewing agencies and working with home care aides. (I received the author’s permission to share this post.) The post is copied below.

Robin

 

“One resource I have used when looking for a new home health aide agency for my mother with [this disorder] that I found valuable is eldercarelink.com. It is a free referral network of agencies that have registered and are pre-screened. You create a profile of your needs and there is also a dialogue box where you can detail your personal situation and exactly what you are looking for.

It is worthwhile to check out their website but I don’t recommend registering until you are really ready for either home care or placement, as each time I have used it, I immediately start to receive calls and emails from multiple agencies trying to ‘get my business’. I’m sure the response depends on your geographic location, I live in [a large metropolitan area[ and each time received at least 3-4 calls from potential agencies. I have to say that so far with every call I have ever received, it was the owner or a high-level manager who called and was extremely helpful and honest. I have had a few that, once into our conversation, admitted that they couldn’t meet my needs but were still helpful with suggestions and other referrals. I have found eldercarelink to be reliable and trustworthy. But as I said before, wait until your needs are immediate before actually registering. There is no obligation or cost on your part for the service.

If you have never been the home health care route, be ready–it can be a trying experience. Do your homework and prepare before your first home interview with any agency. Write down all your questions and requirements and be BOLD and up-front about your expectations. We have been at this for almost 4 years now and it is still a learning experience.

Don’t assume or take anything for granted when it comes to home health aides, that was my mistake early on. My mother’s care and the care of my home are my only concern, I have gotten to the point that they don’t need to like me and I try not to offend anyone, but I have had aides and agencies from one extreme to the other and I tell it like it is the first day they are there, having learned from experience that what you may think is common sense may not be to them. Aides and agencies will come and go, at their request and at yours, so you will likely go thru this more than once.

Don’t settle for less than you need/expect and don’t be afraid to ask for a change if you see that a particular aide is not right for your situation. In your interviews with agencies, be sure you insist that potential aides have had one-on-one HOME care experience, not just nursing home experience. I learned that the hard way, too. In most cases at nursing homes and re-habs, the aides work in teams and rarely do physical manipulation, transfers, etc alone and are not used to or trained to do it without assistance. Also, in facilities there is always someone else to follow up behind them to do what they failed to finish or clean up. That is not acceptable in the home setting when they are the only aide. Above all, be assertive and express your needs and expectations right up front, and get everything in the care plan from the beginning when you do sign on with an agency. Again, thru experience, I found it easier than trying to add things later that you forgot, when the aide may be resistant to being given more duties.

One [more] thing is the importance of being visible. I work, so most times it is just my mother and the aide during the day. If possible, don’t be afraid to pop in un-announced from time to time. And see if you can get friends/relatives to do the same, to visit. Then get their impressions of what they saw and heard. My mother has different morning and afternoon aides from different agencies, then has “lunch buddies” (various close friends) who come each noon to give her lunch and company. I routinely ask them for feedback on how they found her–was she sitting up in the bed with the side rails up, was she clean and neat, were the bedroom/bathroom/kitchen clean and neat and as odor-free as possible, was she in a good mood or upset? They love my Mom and want the best for her, so they are not hesitant to report anything they are not comfortable with.”

“Picking a Nursing Home” article including a list of ombudsman contacts

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This article on selecting a nursing home is in the “Patient Money” series in the New York Times (nytimes.com). Two useful resources mentioned in the article are:

* a list of the ombudsman contacts by state.
http://www.ltcombudsman.org/ombudsman

* Medicare’s Nursing Home Checklist
http://www.medicare.gov/nursing/checklist.pdf

Here’s a link to the full article:

http://www.nytimes.com/2010/03/20/health/20patient.html
Stressful but Vital: Picking a Nursing Home
By Walecia Konrad
New York Times

March 18, 2010

“Balance & Eye Movement Training”-WebinarNotes

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Here are my notes from tonight’s CurePSP webinar with Dr. Cris Zampieri on “Balance and Eye Movement Training in PSP.”

Dr. Zampieri’s presentation was terrific. However, the Q&A afterwards was almost worthless. So many questions had absolutely nothing to do with the topic at hand. This has been a problem to varying degrees with all of the webinars. (As the next two webinars are entirely Q&A, I do hope the organizers can do a better job screening the questions.)

Dr. Zampieri co-authored two interesting articles on balance and eye movement training in PSP in late 2008 and early 2009. In addition to the webinar tonight, there’s a very nice layperson-oriented summary of the research in the March 30, 2009 issue of a publication called “Today in PT.” See:
http://news.todayinpt.com/article/20090 … 4/90327004

You can find the December 2008 article in the Physical Therapy journal for free online here:
http://ptjournal.apta.org/cgi/reprint/88/12/1460 (PDF version)

The February 2009 article in the Archives of Physical Medicine & Rehabilitation is NOT available for free online. A few of those excerpts and the abstract were posted here:
http://forum.psp.org/viewtopic.php?t=7837

“Balance & Eye Movement Training in PSP”
Cris Zampieri, PhD, PT
CurePSP Webinar, 3/11/10

Background: She is currently doing research at the NIH on gait and balance in neurological disorders. She is a researcher, not a clinician. She has a PhD in Rehab Science from the University of Minnesota. Her thesis was on rehabilitation of gaze control to improve attention and mobility in PSP.

The study – published with Dr. Fabio – was on the interplay between eye movements, gait and balance in PSP.

Eye movements are important to balance:
* Saccades (quick eye movements) bring object of interest to focus
* VOR (vestibulo-ocular reflex) – stabilization of gaze; helps keep the visual image steady while the head moves

Vestibular: self to earth
Vision: object to object
Somatosensory: self to self (proprioceptors)

Eye movements are important to walking:
* Saccades helps when changing direction of walking, avoiding obstacles on the walking path, stepping up/down (stairs, curbs), judging distances
* VOR helps to keep the visual image steady as we move our head up and down while walking, turning
* Problems with eye movements have been associated to increased risk of falling

Balance, gait and eye movement problems in PSP:
* Bradykinesia (slow body movements): slower walking, slower preparatory movement to overcome obstacles and slower reactive movement
* Axial rigidity (limited flexibility, especially trunk): limits size of preparatory and reactive movements
* Vertical gaze palsy (slow eye movements, especially vertical): slower saccades compromise tasks that need visual input such as walking, avoiding obstacles, turning, stepping up/down (stairs, curbs)

Rehabilitation in PSP:
* Very little research on this topic
* Before our study, only 3 research studies done (1986, 1993, 2003). All were case reports (1 or 2 patients). All focused on gait or balance rehab; there was NO eye movement training.
* Our study was the first involving a group of patients (ie, small clinical trial) and involving eye movement training as part of the rehabilitation program in PSP.

Optometrist world is separated from the physical therapy world and the neurology world. We tried to bring these worlds together.

This was a first step. It’s necessary to study these techniques in hundreds of patients before we can say there’s an effect.

About the study:
* 20 PSP subjects: moderate impairments on clinical exam; able to walk short distances independently; corrected visual acuity 20/70; no recent eye surgery; no neurological problems other than PSP; no acute orthopedic problems
* Divided into two groups: one group received eye plus balance training; the other got balance training only. Eye+balance training group: 5 males/5 female, 71 years old (average). Balance training group: 5 males/4 females, 67 years old (average).

Exercises – where, how, when:
* At the University of Minnesota PT Dept.
* Individual sessions delivered by trained researchers. Subjects were supervised for safety.
* One hour, 3 times a week, for 4 weeks

Eye movement training included two items:
* Computer-based saccade training. Subjects sat in front of a computer screen. An arrow pointing in some direction was shown. Subjects had to move their eyes in the direction of the arrow. The exercise focused on pushing the eyes to move. Software from www.visionbuilder.no A free sample can be downloaded.
* Biofeedback training. Subjects wore a BIRO (binocular infrared recording system).

Eye movement/balance training included two items:
* Scanning environment to identify hidden objects
* Platform limb cue training. Have to pay attention to arrow and sound to make the right choice about whether there’s a step in front of them.

Balance training included four items for those in the eye/balance training group:
* Romberg: stand with feet close together; eyes open and eyes closed; with eyes closed, the subject must rely on the VOR and somatosensory system for balance
* Turning
* Sit-to-stand. The trick is to lean forward as much as possible to stand up.
* Compensatory stepping

The balance training only group got the above four items once a week. The other two days a week, they got this balance training:
* Alternate knee touch
* Side step: 5 steps to each side
* Heel-to-toe walk: need more balance for this
* Toe lifts
* Heel lifts
* Single leg stands
* Leg lifts (to the side): helps strengthen the glutious
* Leg swings (front and back)
* Step ups: this was not associated with eye movement.

Testing – when, what, how:
* Before and after the program of exercises
* Measured walking speed; walking stance time; walking step length; timed Up and Go test; eye movements (eye only movements, eyes plus head downward movements)
* Used motion analysis sensors (sensors on head and legs, when walking) and infra-red eye sensors

Up and Go test:
* stand up from a chair, walk 3 meters, turn around, walk back to the chair, sit down
* how long does it take to do this?
* the amount of time is related to risk of falling

The VOR cannot be suppressed.

Statistically significant results for the eye+balance group: (in order of largest effect)
Increase in vertical eye movements
Increase in walking speed
Decrease in walking stance time
Decrease in timed Up and Go time

Statistically significant results for the balance only group:
Increase in walking step length. The exercises incorporate range of motion

Conclusions:
* Balance and eye movement training might be effective to improve gait and eye-body coordination in patients with moderate PSP
* Potential way to change circuits in brain that control eye movement and walking in PSP

We all know how hard it is to diagnose PSP. And how hard it is to bring patients to a study. And how hard it is to convince patients that this is worth a try.

[These are Dr. Zampieri’s own questions and answers! This was part of her presentation.]

Q: Can we generalize the results to other patients with PSP?
A: We need larger clinical trials before we can say it’s effective training.

Q: What parts of the intervention were responsible for the improvements?
A: The training included many components. All we can say is that the whole package worked together.

Q: Is there a retention of the benefits after training stops?
A: Another study has to be done for this.

Q: What patients respond better to rehab – early, moderate, or advanced?
A: All we can say is that moderate patients improved.

Q: Would more/less therapy have led to the same results?
A: We don’t know. More studies have to be done.

Q: How does rehab impact risk for falling?
A: It’s tricky to measure falls.

Two papers were published on the study:
Zampieri, et al. Physical Therapy 2008.
Zampieri, et al. Archives of Physical Medicine & Rehabilitation 2009.

QUESTION & ANSWER:
[This is the open Q&A, with questions from the audience. Unless indicated, the answers were given by Dr. Zampieri. Janet Edmunson, Chair of the CurePSP Board, answered some questions. I’ve re-organized the Q&A, and have deleted the irrelevant questions.]

IMPLICATIONS OF THE STUDY

Q: Can I get this eye and balance training in south Florida?

A: The whole program is not totally available in a clinic.

We put the biofeedback together ourselves. We built the device there so it’s not available.

PTs wouldn’t have access to that part. But, yes, the software is available. PTs know the exercises. Other items can be incorporated by PTs.

Q: Does exercise/therapy have any effect on balance or eye movement in PSP patients? So far, we haven’t found any medication, activity, or treatment that has made any improvement.

A: This was the focus of the study. There is nothing out there. My study showed eye and balance training showed a benefit.

We all should be exercising. Exercise is never bad. Use it or lose it.

Q: What exercises should be done (and how often) when the disease becomes a serious balance problem?

A: The same things we did.

Q: Is it worth focusing on balance and eye gaze when the patient can no longer stand or straighten his head to see?

A: I don’t know. Maybe.

STUDY DETAILS

Q: Vision Builder has many selections. Which one should we use?
Q: Is the saccade practice the critical one for PSP?

A: Look for saccade training.

Q: Can you define what you mean by the disease being moderate?

A: Clinicians have a scale that is a list of symptoms that are frequently observed in PSP. Clinicians can grade 0 to 4 the severity of symptoms. The PSP Rating Scale includes saccades, postural instability (pull back test), bradykinesia (opening and closing hands), etc. The composite score tells clinicians if the patient is mild, moderate, or severe.

Q: Many medications have dizziness as a side effect. Were patients required to not have any medication changes prior to and during the study?

A: Many medications do have an effect on balance. We did not change medications in the study. Most of our subjects were not taking medications that would effect balance. Some did.

EYE MOVEMENT PROBLEMS

Q: Is the balance problem caused by the eyes not looking up or down?

A: In part. It’s also caused by bradykinesia and rigidity.

Q: What vestibular issues do PSP patients have?

A: They have problems suppressing VOR. PSP patients may move their heads but their eyes go in a different direction (often opposite).

Q: Could you address the differences in the visual disturbances between PSP and CBD? Falls play a very significant role in these disorders. I am interested in treatment strategies to assist with management.

A: I haven’t treated patients with CBD. I have read about it.

In PSP, eye movements are slow. In CBD, the start of the movement is slow (the latency is slow). The involvement in walking and balance are the same.

Q: Is there anything that can be done to prevent nystagmus, which is an uncontrolled movement of the eyes, usually from side to side, but sometimes the eyes swing up and down or even in a circular movement.

A: Our therapy was not designed to treat nystagmus. It was designed to treat the slowness of eye movement. The biofeedback part of the intervention was related to nystagmus.

Find out about vision therapy from an optometrist.

Looking for things (such as at a grocery store) is a good exercise anyone can do — without software or special equipment.

PHYSICAL THERAPY

Q: Why does PSP cause the patient to run into walls and doorways, even when being guided?

A: Two components there — motor (bradykinesia, rigidity, slow eye movement) and thinking. My presentation was about motor issues.

In terms of thinking issues… There may be impulsive behavior related to the frontal area of the brain. This relates to judgment. Also, the person may realize too slowly there’s something in the way.

Q: What is the difference between exercise and PT?

A: PT uses exercise as a therapeutic approach. PT controls the exercises and adapts them to someone with motor problems. PT is controlled exercise. There is an objective to the exercise. The PT knows what exercise is effective for specific problems.

Q: Interested in efficacy of therapy — physical and speech.

A: Anything is good.

Q: My mother is dragging her leg. Any recommendations on strengthening?

A: I would need to see the patient to say. Talk to the neurologist and the physical therapist. Many things cause someone to drag a leg. (Could be lack of strength, rigidity, bradykinesia, anything.)

Q: I have been struggling with PSP for 6 years. I have fallen all the way down over 1200 times. Now my home caregiver has decided I no longer need physical therapy.

A: The objectives of PT have to be adjusted to what the patient is presenting. If it were me, I would be active as long as I could be.

A by Janet Edmunson: There are ways to be safe while exercising. It is important to avoid falling.

A by audience member: Most insurance companies will only pay for PT if there’s demonstrated improvement.

Q: If the outcome is going to be the same — namely, loss of life — is PT mainly for patient comfort?

A: I wouldn’t say this. I think it’s important to be active for as long as possible.

It depends on the stage of the disease. If we are looking at final stage with respiratory problems, then, yes, for comfort. But while activity is still possible, it should be sought.

Q: Does PT for PSP patients prolong their life at all?

A: I don’t know if anyone can answer this question.

Research is showing that exercise is so beneficial that if we could give a pill of exercise it would be the best pill ever. Exercise is important for neuro-plasticity.

Rats that have been modified to have Parkinson’s Disease that are active, experience delayed progression of PD than rats that are not active.

I’m an exercise advocate!

Q: When should PT be terminated?

A: This is a broad question. The answer is not black and white.

Range of motion is important.

BALANCE

Q: When my husband with PSP sleeps over 12 hours, his balance is much better. Is there any relationship between balance and hours slept? Do most PSP patients sleep so many hours?

A: If this is working, that’s great! The brain must be getting rest.

Q: My husband has MSA-C. He starts the day out with better balance than the evening time. The change is drastic. Can you tell me why the degree of balance changes throughout the same day, not only from stage to stage, of the disease?

A: I don’t have experience with MSA. I don’t remember seeing this drastic change with PSP. I can’t answer this question.

VISION AND OTHER EYE ISSUES

Q: The eye movement interferes with ability to read text. Can eye exercise help a CBD patient with this problem?

A: Look into optometric vision therapy. There are lots of exercises for kids that improve reading a great deal.

Find this sort of therapy through optometric societies.

Q: What does a PSP patient see?

A: There’s a difference between vision and eye movement. Eye movement is about the ability to use your vision.

Q: Is there any type of eyeglass lens that will help to focus things that are below the fixed eyeball?

A: Again, there’s a difference between eye movement and vision. Glasses won’t help you look down. They just help you see better what you are looking at. Prisms are a type of eyeglass that might help.

Q: I have pain above my eyes. Is this due to muscle problems? My left eye does not open all the way.

A: This brings to mind blepharospasm. Talk to your neurologist about this.

A couple of our subjects had blepharospasm. One touched his forehead to encourage the eye lid to open. The other just waited until the eye lid opened.

A by Janet Edmunson: You might consider speaking with your neurologist about botox.

MASSAGE

Q: Do you recommend massage therapy?

A: Massage helps muscles relax. It helps you feel better. It’s valuable. This is a personal opinion.

A by Janet Edmunson: Range of motion exercise is a good thing to do.

“Caregiver Burnout” – Facts, Questions, Resources

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Late last year, I asked if any of the caregiver members of our local support group could help with some activities.  Group member Denise Dagan volunteered her time.  She has been reviewing a stack of books, DVDs, newsletters, etc. that I haven’t had time to review over the last several years.

One of those items is the “Second Opinion for Caregivers” video series produced by PBS.  Back in October 2010, I emailed the support group a transcript of and resource list associated with their episode on “Caregiver Burnout.”

Denise reports that the webpage for the “Caregiver Burnout” episode now includes the full, 27-minute video, which is worth watching:

www.secondopinion-tv.org/episode/caregiver-burnout

Also, Denise reports that the terrific resource list has been given its own webpage:

secondopinion-tv.org/caregivers/resources

Denise watched three of the eight “Second Opinion for Caregivers” episodes.  She provided a summary below of what she learned that you may find valuable.  In particular, I draw your attention to these statements:  “One concept doctors need to embrace and communicate is that when a patient is diagnosed with a long term illness, there are actually two patients’ health needs to consider. If the patient is to be properly cared for, the health of the primary caregiver is of equal importance.”

Along those lines, one of the key points made by the “Caregiver Burnout” episode is that “Being a caregiver puts your physical and emotional well-being at risk.  If you are caring for a loved one, let your doctor know.  It can be important to the healthcare you receive.”

A big “thanks” to Denise, with more to come!

Robin

————————————

Denise’s Report on
“Second Opinion for Caregivers”
PBS video series

Since 2004, the PBS video series, Second Opinion, has been improving the nation’s health literacy in an entertaining format.  Host, Dr. Peter Salgo, engages a panel of medical professionals and patients in an in-depth discussion about life-changing medical decisions.  Using real-life cases, the specialists grapple with diagnosis and treatment options to give viewers the most up-to-date medical information available at the time of filming.

As a National Public Education Campaign on Caregiving, series producers assembled eight of these episodes into Second Opinion for Caregivers.  Most are available free online at

secondopinion-tv.org/caregivers

I viewed three of the caregiving episodes, Alzheimer’s Disease: A Caregiver’s Journey, Kidney Disease: Caring for a Chronic Illness, and Caregiver Burnout.  Here’s a link to the Caregiver Burnout episode:

www.secondopinion-tv.org/episode/caregiver-burnout

One concept doctors need to embrace and communicate is that when a patient is diagnosed with a long term illness, there are actually two patients’ health needs to consider. If the patient is to be properly cared for, the health of the primary caregiver is of equal importance.

Typically, it takes some time for a newly diagnosed ‘team’ of patient and caregiver to come to terms with what it means to live with a long term illness. Doctors commonly plan a series of appointments to follow up on treatments and provide information. IF those appointments consider the caregiver’s needs it is usually a cursory reminder to take care of themselves, too.

Consequently, doctors often see patients with symptoms like: being run down, poor sleep, changes in weight or appetite, irritability, lack of interest in family or previously enjoyed activities. They try to determine the cause from a medical standpoint, testing for chronic fatigue, thyroid problems, or treat for depression without asking the single question that may explain the root of the problem, “Are you a primary caregiver?”  If you are a primary caregiver TELL your doctor so he or she can factor that into their recommendations for your best health.

The doctor that asks the question may need to overcome resistance to the suggestion that the stress of the situation could be what is making the caregiver sick.  To some, that implies they have failed as a caregiver. They may need to hear the list of hats they are wearing to see how much they’ve taken on and why it is too much for a single person.

Many people don’t know what questions to ask when they return to the doctor for follow up. They don’t realize doctors can request community health agencies assess the need for: home health aids, nursing services, social workers, occupational therapists, dietitians, even hospice. They should have spelled out for them what each of those people can do to help both the patient and caregiver.

Doctors need to promote the idea of team caregiving on two fronts:

*The medical team, which consists of the primary care physician and specialist(s), and may include nursing, occupational, physical and/or speech therapists, dietitians, etc.

*The caregiving team, which consists of the primary caregiver, respite caregivers, home health aides, social workers, clergy, hospice, gardeners, handymen, house cleaners, family, neighbors and volunteers.

Once those teams are in place, paying for ALL the help is not factored into our current healthcare system. Because for so much of medical history there were no therapies for many of the illnesses we can treat today, long term care is a relatively new concept. Our medical treatment and payment system is set up for acute care. Doctors are presented with a problem, they fix it, send you on your way, and bill your insurance.

Being an assemblage of medical and caregiving professionals, this panel did not address how to pay for services, but did acknowledge financial concerns contribute to caregiver stress. They recommended primary caregivers be open to whatever assistance is offered, rather than turning away siblings, neighbors, etc. because of dissimilar caregiving practices or not wanting to be a bother. They suggest reaching out to find services and spread the burden of caregiving from a single person to a team.

In response to that, Second Opinion for Caregivers has assembled a very impressive list of organizations providing useful services including access to respite, adult day care, legal services, financial assistance, prescription coverage, hospice information, meals and nutrition programs, housing options, in home and elder care locators, benefits check ups, volunteer coordination, geriatric case managers, and more.  It can be accessed at

secondopinion-tv.org/caregivers/resources