What happens after??

Many years ago I worked as a Social Worker in the community with people with dementia and their partners/husbands/wives and other family members who needed support. There were groups available for people in the early stages of dementia, support groups for family members and volunteers to help support the carers and people with dementia. A well thought out array of supports for both the person with dementia and their family/whanau. There were also government funded supports such as assistance with showering and dressing and other personal care options. Finally, there were government funded residential care facilities when the person with dementia needed to have a level of care not able to be provided in the community. However, when the person went into care, all supports stopped.

While it was difficult in the beginning for many people to receive supports, often once they had become accustomed to the support services they became an important part of their daily lives. The agency that I worked for recognised that once a person with dementia entered residential care, not only did the partner/husband/wife have to cope with that decision but there came about a number of losses.

• The loss and grief associated with their spouse or partner going into residential care.
• The lack of recognition that although things had become difficult to manage at home, they – in most cases – had to cope with the loss of the presence of someone that mostly, was loved.
• In many cases, the support network of people coming into the home to help care for the person with dementia suddenly stopped when the person went into residential care.
• The sudden stopping of that support network and the loss of that support could be quite profound.
• The loss and grief that many did not understand or know that would mean that the person left at home may suffer extreme loneliness. Due to a lack of contact with the people that in some cases could have been coming into the home for several years.

My agency recognised the stage of placing a person with dementia into residential care. They set up a group specially designed to support these people and recognised the complexity and loneliness that was often experienced.

It set me to thinking about people who read this blog, or have read this blog over the past four years I have been writing it. People who were either people with Parkinson’s (PWP) or carers/partners of PWP. Some may have reached that stage of having to make the decision to place the PWP into residential care. Some may have had their PWP pass away. I wonder what supports those partners/wives/husband’s – in particular – would have available to them? When their PWP has entered residential care, is there any recognition that this is a huge step, a difficult decision and they may need support through these changes?

I am sure there will be differing services in different areas and countries. But, I wonder how many services have given any thought to this? How many think ‘problem solved’ for the carer – previously a husband/wife/partner – once the PWP has gone into residential care. Or, even when they have passed away.

Who helps the person left behind to work through the grief and loss of such a huge event in their lives?

Who checks in with them to see that they are supported?

Who even thinks to check with them and see that they are OK?

Does anyone recognise the huge impact of the decision they have had to make in placing a person into residential care?

I have spoken many times of my husband and how he is such a caring and supportive partner. He is my third husband and definitely my last! Third time lucky indeed. He has not had any children of his own and he and my adult children get along well. He considers my six grandchildren to be his grandchildren too, as do I. He is Grampy and is loved by them all. But, he is not my children’s father. He has no family in New Zealand and does not really have any friends, just workmates.

I worry about him when the time comes for me to go into residential care. I worry even more when or if I pass away before him. I hope that my adult children continue to support him and that he continues to be ‘Grampy’ to all our grandchildren. My biggest fear would be that he ends up totally alone. While I love and trust my children, I also know that my husband does not ever want to put people out. He has had difficulty asking for help when I’m here, let alone if I am no longer here for whatever reason. If he were asked if he needed help with anything, he would be inclined to say that he was OK. Even if he wasn’t!

For people like my husband, who are on the surface of it, OK at home I think at times – despite saying they are OK – that maybe help might need to be provided despite their objections in some ways. Checking in on him – whilst delivering a casserole or other food option – could be a way in to gently check up on him that he is OK.

Much as I have often said he is such a loner and an introvert that he could be a hermit living in a cave, I hope my hermit gets visitors from time to time.

I don’t want him to lose me and lose everyone.

My hope is that anyone reading this blog who has had the huge decision to make of putting someone into care that they have support through that decision. That the loss and grief of that decision is recognised and supported.

That whilst being bereft of the presence of the PWP that they don’t end up totally alone. That is a thought that I just could not bear to think of for my husband.

Despite the challenges of living a life ruled by Parkinson’s, there are still a number of losses along the way.

I hope someone recognises the losses and offers support.