Posted in Caregivers

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.

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Posted in Caregivers

Pay attention to your emotions

positive images
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.*

Posted in Caregivers

In Sickness and In Health: Caring For Each Other

Wonderful article. Thank you Dr. Maria De Leon and Lucy.

Women With Parkinson's Disease

We are so lucky, many of us, to have a spouse or other close family member to act as caregiver.  And there are many support groups, articles,  books and advisers to tell these people how not to burn out so as to be useful to their spouses. For this post, however, we’re addressing spouses who are the care-recipient, those of us who struggle with medical challenges so we can be more aware and compassionate about its impact on our spouses.

Dr. Maria De Leon offered to address this issue for us.  She’s been on both sides of the care-giver/care recipient fence so brings a unique perspective to the topic.  Following my post is Dr. De Leon’s take on the care-giver issue.  At the meeting in May, we can learn from each other by hearing from different philosophies and approaches, strategies that have worked and what we’ve learned.

Ed Kathy

In Sickness and In Health

From…

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Posted in Caregivers

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.*

Posted in Caregivers

Day-to-day life

couples

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
-Improved nutrition
-Carefully monitoring medications and their interactions
-Intellectual stimulation
-Social interaction
-Spiritual renewal
-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*