Being a Caregiver for a Partner with Parkinson’s (part 4)

c4cgrContributed by William Hicks

The following discussion may help to ease some of the challenges of PD care-giving:

  • Monitor care receiver tasks. Be cognizant of those duties the care receiver performs and watch for signs of inadequacy. Do not let bills go unpaid for months before stepping in. Collect and safeguard all tax documents. Understand the sequence of periodic car and home maintenance. Monitor medications closely to ensure that the care receiver does not decide to do something unsafe and be prepared to step in when they are no longer able to reliably self-medicate. Be organized so that any outside caregiver understands your routine. Be prepared to assume additional tasks to avoid unnecessary work later. But…
  • Each task you assume is one more loss of independence and self-worth for the care receiver. Recognize that he or she may resent the intrusion or fight to retain responsibility. It may be helpful to start discussions early, while rational discussion is still possible, regarding your assuming tasks. You might ask the care receiver to show you how the task is accomplished to ease the transition. That tactic may not work, in which case you may simply take over the chore. It is imperative that the caregiver understands how to most effectively work with the care receiver to achieve the desired outcome. You must be strong when the outcome is important.
  • Do not expect acknowledgment for your efforts as a caregiver. If words of appreciation come, savor them, but recognize that the care receiver will likely not acknowledge much of your caregiver efforts and sacrifices. Even if the care receiver recognizes and appreciates your efforts, the care receiver may not be able to express their appreciation.
  • Keep children and siblings in the picture. It is important that those close to the PD sufferer remain aware of the changing condition of their loved one. Do not try to “protect” them from the reality of PD. Do not let them be surprised by “how mom/sis has changed” when they come for a visit after a long absence. By remaining aware of conditions they will be more able to accept the PD suffer as they are and much less likely to react poorly towards you or your care receiver. Also, as appropriate, keep them aware of your contingency plans, power of attorney arrangements, living will arrangements, etc. They may need to take action and foreknowledge will prepare them for the eventuality.
  • Recognize that your job as caregiver for a PD sufferer will grow over time. While continuing all the responsibilities you previously shared, you will assume added tasks of caring for both the care receiver and you. It may be useful to list or catalog the tasks, particularly if the care receiver was independently responsible for many tasks. Moving forward, you will no longer be taken care of or told what to do and when to do the important tasks of life. It is a hard reality, but one best accepted sooner rather than later before you are compromised by possible anger or depression.
  • Join and participate in a PD caregiver support group. Through group discussions and sharing you will realize that others are facing the same challenges and fears that you face. Many strategies and coping mechanisms will be discussed. Through the discussions, you will gain a better understanding of yourself, your fears, and the skills required to complete the tasks that make up your job of caregiver for a PD sufferer.
  • Take care of yourself. Care giving is stressful, frustrating, time consuming and will cause sleep deprivation. You must remain strong for the long haul. Ask for help, exercise, focus on adequate sleep, and maintain joyful activities in your life, even if you must hire a caregiver to give you the time.
  • And finally, remember the Serenity Prayer:

“God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.”

More from Bill to follow…

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Being a Caregiver for a Partner with Parkinson’s (part 3)

 

c4cgrContributed by William Hicks

The following discussion may help to ease some of the challenges of PD care-giving:

  • Work to understand your care receiver. Determine what motivates him or her. Determine your actions that are most likely to obtain the desired response or outcome from your care receiver. Learn the words or inferences that lead to resistance or “rebellion”. Achieving the desired or necessary outcome is a key element of your job description as a caregiver (even if you never applied for the job!).
  • Your independent world will decrease as your responsibilities to the care receiver increase. Recognize this reality and do not try to “do it all” by maintaining a job or other independent activities while concurrently assuming additional responsibilities on behalf of the care receiver. This shrinking of the caregiver’s world may cause significant sadness, bitterness and/or resentment unless the caregiver recognizes and accepts this situation. Maintaining some level of independence may be achieved by periodically utilizing a paid caregiver.
  • Prioritize actions. Going to a medical appointment is important. Making a safe transition to the car is important. Going to lunch is not. Making the bed, doing the laundry today, or having a neat closet is not. If the care receiver wants to exert some authority regarding not going to lunch, let it go. It is not important that you be in control of that activity, so go in whatever direction the care receiver leads. Pick your battles carefully. If any outcome is O.K., follow the lead of the care receiver.
  • Expand your tolerance for imperfection. Your care receiver may act in ways that, under normal situations, would not seem acceptable. When you consider an action or situation intolerable, your level of anger, stress, and anxiety will increase. Your care receiver will probably not understand your anger and may react poorly. Your anxiety and stress may intimidate your care receiver, and likely will not improve their actions or performance. Instead, match your expectations to the reality of your care receiver’s actions and abilities.
  • Integrate the medical care of your care receiver. Your family doctor will likely not have the records, interest, or skills to assimilate inputs from the other specialists. You alone will need to maintain the “big picture” as integrator of conclusions from the various medical professionals such as the neurologist, orthopedic specialist, cardiologist, therapists etc. Various specialists will suggest different therapies. Keep notes from medical appointments and treatments including what works and what do not work for your particular care receiver. Be cognizant of treatment conflicts and evaluate their value for the care receiver. Only you will know all of the medications that are prescribed for your care receiver. It is your task to integrate all medical history and ensure that each provider knows what he or she needs to most effectively treat your care receiver.

More to follow…

Being a Caregiver for a Partner with Parkinson’s (part 1)

c4cgrContributed by William Hicks

The following comments and advice have evolved during my ten plus years as a caregiver for my dear wife with Parkinson’s Disease (PD) along with insight gained from participation with several support groups for PD caregivers or PD sufferers (care receivers). Needless to say, the thoughts and conclusions are mine alone, but I hope they will be of help to the many PD caregivers who often feel “all alone on a windy corner.”

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Being a PD caregiver is a mixed labor of love, commitment, and obligation. It is also, however, a job that requires certain tasks and skills to be successful. Many of us become caregivers without a clear understanding of the tasks involved and lack some of the skills necessary to successfully complete the tasks. Adding to the challenge is that most of us caregivers are spouses or children of our care receivers, which may hinder our ability to do our jobs objectively. I will discuss some of the tasks and explore some of the skills that may make care giving for a PD sufferer more successful and more satisfying for both the caregiver and the care receiver.

PD is a challenging condition that affects both the motor control and the cognitive capabilities of the sufferers. PD is really a syndrome that affects each sufferer differently. The progress of the individual symptoms is different and the severity of each symptom may be different for each sufferer. However, PD never gets better. There is no remission or cure. We are caregivers for the long haul. Thus it is important for the caregiver to understand the progression of PD in their care receiver and accomplish the care-giving tasks accordingly. All of the subjects in the following discussion will not affect each PD household equally or on the same schedule. However, the household caregiver should be aware of each subject and objectively confront each challenge as it develops. Ignoring the issue will only make the ultimate response more difficult.

The caregiver must become the primary household manager. The caregiver will assume management of not only the care receiver and their medications and medical interactions, but also many household tasks that had previously not been the responsibility of the caregiver. Many caregivers have had little experience with some required tasks and thus have not developed the necessary skills to successfully complete those tasks. More importantly, they may not envision themselves “in charge” of the new responsibilities and may feel challenged or intimidated. Compounding the difficulties of this new role is the fact that PD progresses slowly so the shifting of responsibility will also progress slowly. The care receiver did the taxes last year but cannot do them this year and the caregiver does not even know where the records necessary to complete the return can be found. Similar situations arise associated with bill paying, medications, dressing, shopping, cooking, laundry, and all the other tasks of household daily functioning.

Practical Caregiving

supports

If your loved one needs considerable help, a well-planned routine can make
the more demanding parts of your day go more smoothly, take less time and
help ensure that the one you care for doesn’t develop problems that could
have been prevented.

1. Make a list of all the items you need for morning and bedtime routines,
buy extra supplies of these items, and keep tem close at hand (e.g., bathing
items, medications and clothing).  If you use them in different rooms, have
duplicates.  This saves time and keeps you from having to search for items.

2. Since getting up and going to bed are often the most challenging times of
the day, have someone help you with the morning and bedtime routines.

3. Practice good oral hygiene that includes tooth brushing, preferably after
every meal.  Good oral hygiene helps to prevent tooth decay, tooth loss, gum
diseases and secondary infections that can result from poor dental care.

4. If your care recipient is disabled, has poor eyesight or cognitive
impairments, you may need to remind them about personal hygiene or provide
assistance.  If your care recipient is incontinent, it is important to
ensure that they are clean at all times, to use protective (barrier) creams,
and to change incontinence aids and clothing as often as needed.

5. Persons with limited movement should be turned in bed on a regular basis
to prevent pressure sores.  Consult with your medical team.  Correct
bedding, such as sheepskin or egg carton bed coverings or an air mattress,
helps to prevent pressure sores.

It is important to move persons with disabilities at least once an hour,
even if it’s just to reposition them, to do range of motion exercises and to
have them sit in various chairs that offer sufficient support.*

Going to the doctor

doctor
You may want to accompany the person you care for at doctor’s appointments
to take notes.  This helps to ensure that you both understand the
recommended medical course of action and gives you the chance to observe the
interaction between the two.

Following are some tips for improving communication with care recipient’s
doctor(s):

1. Write down any symptoms or side effects that your care recipient may be
experiencing, along with other pertinent information (time of day, what they
ate, etc.)
2. Also write down any questions that you may want to ask, or any concerns
that you have. Regardless of how insignificant you may feel the doctor may
think it is, ask!
3. Ask about any possible side effects your care recipient may experience
while taking prescribed medications.
4. Ask if any new medication will interact negatively with current
medications.
5. Make sure you know the correct spelling of each medication your care
recipient is taking, the dosage and how many times a day they take it.
6. Ask for recommendations regarding taking a medication, i.e., should it be
take with food, at what times and what to do if a dose is missed.
7. Ask for storage instructions for each medication, i.e., in the
refrigerator, in a medicine cabinet, etc.

If your care recipient is limited in their physical abilities, ask the
doctor about the possibility of having physical, speech, or occupational
therapy.  You should also ask about assistive devices that are available.*