​

How long have you been married and how did you meet?

​

20 yrs. Mutual friends introduced us

​

​

How long have you been a caregiver?

 

It has been 10 years since Ken's Parkinson's Disease diagnosis. It has only been the last 2 that the cognitive impairment component has required more dedicated caregiving. Ken's form of dementia is not Alzheimer's but it does present with some similar symptoms and does carry a similar emotional, physical and mental challenge.

 

​

What has been most helpful to you during this time and how?

 

Having a good support system in place is invaluable. I hang with some great women who are caregivers to spouses with both Parkinson's and Alzheimer's. We talk and drink wine together and bitch, piss and moan to each other in an environment that is totally loving and totally safe. Also, it is absolutely imperative that I invest in getaway time allowing for both time alone and time with my girlfriends so that I can practice being a "normal" person for a while!

​

​

What has been the most challenging part of being a caregiver and what do you struggle with?

​

I am not a natural at this. It is not in my nature to be a LONG-TERM caregiver.I do not enjoy being around needy, clingy people. I am fiercely independent and find myself resentful of the situation at times.   What do you struggle with? Patience and compassion fatigue.

​

​

Imagine that you've just met a person who's loved one just received their diagnosis yesterday. They are at Day 1 of this journey. What advice would you give them?

​

Do your research! Know what you are dealing with. Get a great "brain doctor"/specialist on your team (and it IS a team effort) who is communicative and has a genuine interest in both the patient and in the caregiver's well-being. Most importantly find a support group that you feel comfortable with and make friends with other caregivers. Also, do not try to be a super human! You can't do it all. Sometimes you MUST ask for help and you must take time off for yourself. Self-care is critical for your own survival as well as that of your loved one.

​

Is there anything else you would like to share?

Being a caregiver offers one of the greatest opportunities for personal, spiritual growth that a person can have. When things get rough, stay present and in the moment and simply FEEL your feelings. Do NOT try to rationalize or talk yourself out of those feelings. And don't attach a story to them either. Our minds love to make up stories about how, why and if only! Stay in the present and stay grounded and know that Spirit is always by your side offering strength and courage.