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.
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…
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…
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.”
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.
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.*
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.*
Caregivers sometimes become so involved in their efforts to keep things
going that they tend to forget that each day can present the opportunity to
try new approaches and activities that will make a positive difference in
their lives and the lives of those they care for.
Some things that can bring about positive changes include:
-Standing back and taking a look at your situation – what is working well
and what is not – and finding ways to make changes for the better
-Establishing routines that effectively meet your needs as well as the needs
of the one you care for
-Improving your physical surroundings
-Physical, speech, and occupational therapy and exercise
-Assistive devices that increase independence and safety, ranging from
special eating utensils to specially equipped telephones
-Carefully monitoring medications and their interactions
-Employing home or health care personnel who demonstrate that they really do
care and who will work to foster independence
-Finding ways to economize on your workload
-Filling each day with activities you can both look forward to*