Hospital challenges

Contributed by William Hicks

Many hospitals are not prepared for the unique and regimented care require by the PD sufferer so the caregiver must be a forceful advocate to ensure the appropriate treatment for the patient. The following areas require particular planning and vigilance:

Medications: Most PD sufferers take many medications on a rigid schedule. Hospitals are lax as to the medication delivery schedule—plus or minus an hour is fine with their requirements but unacceptable for many PD patients. The caregiver must be positive and persistent to have the meds administered on the patient’s schedule, not the hospital schedule. My experience is that it can be done, although I may get the meds from the nursing station and administer them myself, and yes with enough nagging, the on-duty staff was willing to accept that approach. The second issue with meds is that the hospital pharmacy may not have all the meds the PD patient requires and may try to substitute. I offer to provide the meds they do not have and they accept the offer but the meds must be approved by the pharmacy which may be a hassle but doable and worth it. If the hospitalization is planned, the meds issues can be worked on in advance so they are less of a struggle when the patient is in the hospital. When the hospitalization is unexpected and possibly via the emergency room, be prepared to be persistent, bring the meds to the hospital and attempt to force maintenance of the patients meds schedule. You may need to have a prepared hospital kit and instructions in readiness for the possibility of an unexpected hospitalization.

Anesthesia: General anesthesia may result in significant after-effects in PD sufferers. Confusion, hallucinations, irrational and combative behavior can persist for a couple weeks making recovery more challenging and dealing with the patient more difficult. Surgeons and anesthesiologists seem unaware of this hazard. The meeting with the surgeon and anesthesiologist just before the patient goes into surgery is particularly important, will take more time than is allotted and may require forceful advocacy on behalf of the patient. Push for the use of a local anesthetic with minimal sedation. Discuss the unique impact of general anesthesia on PD patients. You can find multiple write-ups on the hazards of anesthesia on various PD websites. Google will provide lots of references. Go to the preop meeting prepared to be a strong advocate for the patient.

Caregiver in the hospital: If the PD sufferer has a full time caregiver at home, consider the necessity of providing someone in the room with them while hospitalized. This may be particularly important if general anesthesia has been used or if the patient is uneasy to be alone. It may not be necessary, but be aware of the potential need. The hospital may provide a “sitter”, but so long as a “sitter” is required, discharge may be a problem.

Living arrangements

Contributed by William Hicks

Each caregiver must determine if the current living space is and will remain satisfactory as PD progresses. Resolve whether it is better to make accessibility modifications to the existing home or whether it is more prudent to move to a more accommodating home. Ultimately you will need to decide whether it is possible to keep the PD sufferer in your home or place them in a nursing or memory impaired facility. This decision will be hard. It will force you and possibly your family support group to confront a sad reality concerning the loved one with PD. Since PD progresses so slowly, it is easy to overlook the necessity for changes in living arrangements until it is too late to find accommodations while still assuring that the current location is safe for the care receiver. As these decisions may require the informed consent of the care receiver, they should be addressed before PD advances to the point when the sufferer is unable to participate in the discussions and decisions or after a guardian is appointed. A properly structured medical power of attorney may also help when the decision is necessary.

Legal considerations for caregivers

Contributed by William Hicks

Most relationships between a PD caregiver and care receiver include shared legal responsibilities. These include Power of Attorney, Medical Power of Attorney, Advanced Medical Directives (living wills), wills, property titles, and car titles. The caregiver must recognize when the care receiver is not competent to carry out the responsibilities of these documents. In many cases, the responsibilities and decisions conveyed by the documents are assigned to the care receiver on behalf of the caregiver. If you begin to recognize that the care receiver is no longer able to make decisions in your best interest, change the documents accordingly.
At some point, the PD sufferer may become unable to make appropriate decisions on his or her own behalf. Taking the necessary steps to have the care receiver declared incompetent and a guardian appointed is a heartbreaking personal decision that most of us will chose not to make. However, the caregiver must recognize that having a guardian appointed may, at some point, be necessary. Consultation with an attorney who practices elder law may be the appropriate first step and should be taken sooner rather than later.
Develop and promulgate a contingency care-giving plan. Reality is that you are one accident or one major medical emergency away from being unable to perform as caregiver. If you are not able to function as caregiver due to your own aging or a compromising emergency, your plan should specify the regimen of care and who is responsible for ensuring continuation of that regimen. Ensure the individuals and organizations that assume care-giving responsibilities have the contingency plan and that details of the care regimen are kept current.

Financial considerations for caregivers

Contributed by William Hicks

Ensure that you, as caregiver, have individual or joint signature authority over all bank and financial accounts. It is a tragic situation when the PD sufferer is the only one who can sign the check and for irrational reasons, will not sign it. Many situations can quickly deteriorate when expenditures are necessary yet cannot be made. Do not delay to resolve signature authority as soon as it becomes clear that you will be the caregiver and that cognitive deterioration is a possibility.
Consider the roles of trustee. If there are trusts involved in the financial picture, at some point the care receiver will be unable to function as a trustee. As that time approaches and if the trust has such a provision, the care receiver should resign as a trustee so that an alternate trustee can be available to act if something happens to the caregiver who is co-trustee.
Gain an understanding of the family financial picture. Develop an understanding of electronic banking and bill payment. Obtain all passwords to gain access to account information. Understand your investments and become involved with the investment advisor or broker. The caregiver will ultimately be responsible for the portfolio and must know and trust the individuals who manage the investment portfolio. Understand retirement plan arrangements, including identifying who is the beneficiary and determining whether that beneficiary is competent to make required decisions. Understand your insurance plans, including identifying the insurance agent, policies that are active, and what are the conditions of those policies.

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

Contributed 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.”

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

Contributed 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 2)

Contributed by William Hicks

The first and arguably the most important skill for success as a caregiver is to understand how to motivate and facilitate the care receiver and to understand your own reactions to care-giving. Just as the caregiver role expands, the role of the care receiver shrinks. Due to cognitive issues, they may not understand the reasons for the reduced role or willingly accept it. Also, due to cognitive decline, having a rational discussion regarding the shifting roles may not be productive or lead to the desired outcome. The PD sufferer becomes more and more childlike, yet unlike a child, will not mature over time. “I have to do more and more, I get more and more frustrated, and I dislike myself for it.” “I was so mean to _____ the other day and felt so badly after it was over. I know that ___ felt badly also.” How many caregivers have said these words or had these thoughts? These concerns may indicate that the caregiver is human and caring and/or does not yet understanding the scope and conditions of their care-giving job including the necessary tasks and skills. The following discussion may help to ease some of the challenges of PD care-giving:

The care receiver is probably not being difficult on purpose. Accept that he or she simply cannot help how they react. Similar to a child, they may take actions or refuse to take actions in ways that make no sense or are aggravating. The caregiver must be the adult in each situation.
Understand and accept the role reversal. If the caregiver is caring for a parent, the parent-child relationship is reversed, but the parent may not see or accept that. When the caregiver is a spouse, the roles of the marriage relationship may be reversed and evolve to a parent-child relationship. The care receiver may not see or accept this role change, but the caregiver must recognize his or her changing roles and responsibilities and act accordingly. “Business as usual” won’t work.
All care receiver activities will take longer and can be frustrating. Allow additional time and expect delays in their getting up, getting dressed, eating, bathing, and getting ready to go out. Recognize that decisions regarding clothing or accessories may not make sense or may be redone several times. Don’t get frustrated and don’t expect the care receiver to hurry or feel your anxiety towards being late. They won’t—and your pressure and criticism will not help. It will only increase your level of stress.

More to follow…

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

Contributed 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.

Pay attention to your emotions

Just as hunger lets you know that you need food, emotions can let you know
when you need assistance and support. Keep in mind that it is okay to feel
angry, frustrated, sad or inadequate from time to time. Having these
feelings is completely normal, and almost every caregiver experiences them
at some point.

If you feel stressed, angry or depressed:
– Remove yourself from the situation by walking away, even if it is just
around the house
– Talk to someone you feel close to or call a hotline
– Talk with your doctor or health professional
– Write your feelings down in a journal

Caring for another person can also create a positive emotional change.
Aside from feeling stress, many caregivers say their role has had many
positive effects on their lives, such as giving them a sense of purpose.

A note about grief
Most people associate grief with the feelings you have when a loved one
dies. As a caregiver, you may experience many losses, including the loss of
the relationship you had with the person you are caring for, and the
progressive loss of independence that your loved one is going through. To
cope, talk about your feelings. Be as patient with yourself through this
process as you would be with others.*

Practical Caregiving

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.*