The Three Toughest Challenges I Faced As a Caregiver

Editors Note:  In honor of National Family Caregivers Month I will be doing a 3 part series on my caregiving experience.  It will be cross posted at Caregiving.com , eCareDiary.com and LosingourParents.com.

Becoming a caregiver is an unplanned experience since we never know when or where it will occur.  It creates many challenges in terms of day to day care and the emotional needs of the patient and caregiver.  When I was caring for my father who suffered from Parkinson’s disease I faced many challenges and will discuss the three toughest ones.

Allowing My Father to Be Independent While Convincing Him He Needed Help

Parkinson’s is a degenerative disease so when my father was initially diagnosed the medications addressed many of the symptoms permitting him to live independently.  However, as the disease started to take its toll on his body and the medications were less effective, it became harder and harder for him to live without help.  He started to fall, had trouble making meals for himself, dressing himself and bathing himself. 

My father’s way of coping with the disease was to deny that Parkinson’s prevented him from doing the things he wanted.  Since he was in denial, the toughest part was getting him to face the fact that he needed home care. 

In most cases, the decision to seek long term care is a multi-step process that requires working with the patient and convincing them they need help.  This includes evaluating their ability to perform activities of daily living, talking with them about the issues they are having and finally coming to a consensus about taking action or, in the worst case, making the decision for them. 

My father was very reluctant to accept any help because he saw it as an infringement on his independence.  We had many “heated” discussions about it.  He had an active life which he wanted to continue. 

He began to realize it was not possible to do all these things without help and he reluctantly gave in to getting home care.  This worked out well because it allowed him to live the life he desired. 

The Demands of Being a Caregiver

Throughout my experience as a caregiver I had a full time job and was also married but did not have children.  While getting my father home care made his life easier and lessened the burden on me, I was surprised at how demanding being a caregiver was. 

On top of the usual care demands, my father wanted to continue traveling, attending sporting events and participating in community activities.  As a caregiver, you know that the time with your loved one is short so you try to help them whenever possible.

Trying to juggle my father’s demands with everything else was extremely stressful.  I did my best to accommodate him and he, for the most part, was happy.  I, on the other hand, was constantly tired and stressed. 

I began to suffer caregiver burnout.  I needed a break and someone to talk to about the issues of being a caregiver.  At my wife’s suggestion, I began to get counseling. 

While I did not need major psychological help, I needed an impartial person with whom I could discuss this very stressful situation.  The advantage of talking with a counselor instead of a family member is that they are not emotionally involved and did not feel pressure to help.  My counselor had been through caregiving with his own parents and had many useful insights he shared.

It was one of the best decisions I made because it helped me cope with this difficult situation.  I realize that not everyone is open to counseling or has insurance that will cover it.  However, talking with someone who has an impartial view is very helpful.

The Rapid Decline in the Last Year

Facing the fact that a loved one is nearing the end of their life is difficult.  In my case I was in denial because you never want to say goodbye.  Nonetheless, I found my father’s rapid decline in the last 9 months of his life surprising and extremely challenging. 

My father’s experience with Parkinson’s had been slight declines in health followed by long plateaus where little changed.  Towards the end he was on a straight downward slope. 

A month before he passed away, I thought he had about six months to a year to live but I was wrong.  He had a massive stroke while on his annual vacation at the beach. It was a complete shock because we had been prepared for his death to come from Parkinson’s not something else.

Fortunately my father had planned for end of life with a living will, a healthcare proxy and power of attorney.  He had made it clear that he did not want to live if he had major loss of brain functions with no hope of recovery.  Based on conversations with the doctors it was clear he had reached this point. 

We adhered to his wishes, placed him in hospice where he passed away peacefully surrounded by his family.  It has been 2 years, and I still think about how shockingly quick the end was.  It is still tough to deal with, but I take comfort knowing we adhered to his wishes and that he is at peace.