When I was growing up, there were people in our lives who we called Auntie or Uncle and we always thought of them as that. Several years passed before I remember having a conversation with my Mum and I asked whose side of the family this Auntie and Uncle came from. Mum then told me that they weren’t actually in any way either blood relatives or had married into the clan. There was a practice that I hadn’t been aware of that if you had close friends who you spent a lot of time with, rather than have your children calling them Mr X or Mrs Y which sounded too formal, you called them Auntie or Uncle. In that way, I am sure that the honorary Auntie or Uncle in all likelihood felt like part of the family.
I have been married three times, with my first marriage being the only one in which I had children. I left my children’s father when my daughter – my youngest – was about 6 years old, so that would be about 32 years ago! Crikey, time flies! While some of the family didn’t contact me after that marriage ended, others have been constantly open and loving and always treated me like family. It is so nice to know that I have someone in my children’s father’s family who considers me to still be family. I am always guaranteed quite a few hugs from various people at any family gathering of my ex-husband’s family. In fact, ever since our eldest son passed away unexpectedly in 2020, the children’s father and I and his partner always hug each other when we are at family gatherings. That is so nice for my children that they know that both their Dad and his partner and myself and my husband all get on now. Speaking of honorary relatives, my children came up with a name for their father’s partner. That is Hanny, which is short for Honorary Nanna. I think that’s rather sweet.
I messaged my ex-sister-in-law today and we talked about my blog and podcasts which she follows. I was asking what she thought about them. She is so lovely, but with that loveliness she is also honest to a fault. She was very complimentary of both my efforts. I voiced that I appreciated that she continued to treat me like family. To which she replied that in her eyes I would always be family. I was really touched by her saying that.
It made me think about how we do or don’t nurture relationships. I know with all my health and pain issues that I struggle to think beyond myself and my issues sometimes. But, just as I checked in with “L” today, from time to time I will randomly contact members of my children’s paternal family. Just a wee check in online, or perhaps a bit more if I am made aware of any major issues for any of them. Just to ensure that the connection to that family is maintained.
For those of us with a condition like Parkinson’s and in some ways more so for our partners/husbands/wives or even some adult children we will need support as we travel further down this road. This road will be rocky at times and difficult, these are the times when friends and/or family are those we can hopefully rely on to support us. Talking to my cousin today, I said to her that my biggest fear is that if I go first that my husband might not have anyone to support him. I know my daughter is busy with her career and her three daughters and my son with his career and his three sons and lives in Wellington, while we reside in Christchurch. I know that they would not mean to neglect him if I am no longer around, but he is not their father. He is, however, Grampy to all six grandchildren and they adore him. In fact, I hope that the grandchildren bring their children to visit us if they have any. I am sure that he will have some support, but also aware that his very small family are all in the UK.
We all need people in our lives, especially as we age and have significant health conditions. There are times when we find ourselves in hospital and it is always nice to have someone there for support. I know I don’t like it when I have health issues which mean I need to go to hospital and no-one is there to support me. My cousin is a constant source of care and support. I have even turned her into a hugger! :-). She is more than a cousin, she is like a sister to me plus a really good friend I can rely on. She is honest with me and she is the person I rely on – after my husband – every time. It’s only been since we moved out to North Canterbury that we have become so close. We’re also much closer with my Uncle (her Dad) and try to see him reasonably regularly. He is in his 80’s but still gets around quite well. He even helps me into the car sometimes and I am probably 20+ years younger than him!
I have never been someone who has a lot of friends. I can’t remember ever having many at all. However, I would rather have my cousin and my ex-sister-in-law and about 2-3 others that I know I can rely on, than a group of 20 who would always be too busy if I had a health issue. That’s just me. I believe in quality not quantity.
However high or low the number of friends you may have, if it is just a handful that can be relied on, then that is enough for me. Parkinson’s in the latter stages can be a lonely and isolating condition. For both the carer and the person with Parkinson’s, both can be isolated in their home if others are not aware. Looking at contacting a local Parkinson’s Society can be a good idea, as they often have volunteers who can come and sit with the person with Parkinson’s to give the carer a break. In some instances, especially if a person has no reliable friends or family to assist, they can perhaps visit on a regular basis to give the carer regular support that means people like my husband can still get out for walks for a few hours to recharge their batteries.
You might be surprised down the track who steps up for you and equally who doesn’t. But, we will all need someone because no-one can safely do this journey alone. Whether as a spouse or carer, or whatever label you or others put on you, you will need someone to be there with you. If you are offered formal supports, please think about it carefully before turning them down. As a former professional Social Worker I know that formal help is not offered unless you are assessed by someone in a professional role to need it.
You may not realise what a toll things are taking on either of you.
So, please if you could at least think about it if offered support.
Even if not right now.
But leave the door open.
My journey with Parkinsons 