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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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.*

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.*

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*

What is a Caregiver?

VA_Caregiver-Logo

One of the biggest obstacles in caregiving is recognizing that you are caregiving. Many family members think that what they are doing for their spouse, child, other relative or friend is nothing more than what family does for each other when there is a need. And that is true.

Running errands, picking up medications, driving to the doctor, arranging home care, helping to get dressed…regardless of the task, it is all caregiving. If you are helping someone with some of their activities of daily living, you are a Caregiver.

If you are caring for a Veteran, you might be eligible to participate in the Family Caregivers Program. A Primary Family Caregiver stipend is monetary compensation paid to a Primary Family Caregiver for providing personal care services to an eligible Veteran enrolled in the Caregiver Program. The stipend is not intended to replace career earnings, and receipt of the stipend payments does not create an employment relationship between VA and the Primary Family Caregiver.*

See VA fact sheet 11-04 for more details http://www.va.gov/PURCHASEDCARE/docs/pubfiles/factsheets/FactSheet_11-04.pdf

Also see the VA Caregiver Support site at http://www.caregiver.va.gov/

10 Tips for Caregivers

care hands

  1. Seek support from other caregivers.  You are not alone!
  2. Take care of your own health so that you can be strong enough to take care of your loved one.
  3. Accept offers of help and suggest specific things people can do to help you.
  4. Learn how to communicate effectively with doctors.
  5. Caregiving is hard work so take respite breaks often.
  6. Watch out for signs of depression and don’t delay in getting professional help when you need it.
  7. Be open to new technologies that can help you care for your loved one.
  8. Organize medical information so it’s up to date and easy to find.
  9. Make sure legal documents are in order.
  10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

Strengthen your caregiver

careHow can Parkinson’s patients help their caregivers stay strong? By giving their best effort when undergoing therapy. When diagnosed, Parkinson’s patients and caregivers are told there is no cure for the disease and that their condition will progressively worsen. Hearing this news can be depressing. There are, however, many treatments programs available to help Parkinson’s patients resist the disease’s debilitating effects. An example of such therapy is the Lee Silverman Voice Treatment (LSVT) program. I can say the LSVT program has helped me by teaching me strategies to overcome Parkinson’s symptoms. (I talk about the LSVT strategies in another post) The fact is my voice is getting stronger and the concepts I’ve learned in therapy can be used in other areas of my life. This improvement has encouraged my wife. She said that seeing my progress has given her hope that we can enjoy some success at keeping the symptoms at bay. We don’t have to sit hopelessly by and wait for my condition to deteriorate. So, by giving maximum effort to my therapy, I not only help myself, I’ve strengthened my caregiver.