Losing my husband to Parkinson's

Frances' husband Mark has advanced Parkinson's and dementia, and recently moved into a nursing home.

She shares her candid experiences and feelings on coming to terms with her new situation.

Mark has now been in a nursing home for 5 days. When anyone asks me how I am, the stock reply is 'I'm fine'. But decision making, the ability to cope and remembering things is a huge struggle.

At present my scrambled mind and exhausted body hasn't calmed down and it is difficult to sleep throughout the night. Perhaps soon I will go to bed without waking up during the small hours wondering what I should be doing or worrying about.

I know it's very early days and this process will take some time, but I've been trying to come to terms with this enormous change in our circumstances. It seems very odd to be living in this flat on my own. It was chosen primarily with Mark's needs in mind, and for the past 6 years it worked well. Now living here on my own just doesn't seem right.

A different person

Despite having been married to Mark for 33 years, I am now a visitor when I go to see him in the nursing home. What's even stranger is that he appears remarkably different to the person he was just 6 days ago.

The man I married has gone, probably forever. In his place is someone who seems familiar but in actual fact isn't really the same person at all.

His dementia means that sometimes he knows me, sometimes he does not. Sometimes he's abusive – sometimes not. So if someone could explain my role now it would be helpful – am I still a wife, or, when I am not visiting him and sitting at his bedside in the nursing home holding his hand, am I a widow or a single person?

Am I really grieving for the loss of my husband, or is it actually the loss of identity that I am finding bewildering?

Due to his slow deterioration over the past 12 years, and having been his sole carer over that period, I am feeling robbed. Is it the retirement we'd planned which was simply never going to happen once we'd had the Parkinson's diagnosis, or something else entirely? Is this bereavement?

I have lost my husband, but he is not dead. This state of affairs is, to say the least, peculiar, and leaves me wondering what others do in similar circumstances. I hope at least that sharing my experiences might help other people who are as confused as I am as to their future role.

Mixed feelings

There is a sense of relief too. The burden of responsibility has finally been lifted from my shoulders and placed in the hands of many wonderful people.

However, in contrast, there is inevitable guilt. I was not able to complete the task I had set for myself. I had no idea to what extent and how rapidly Mark would deteriorate, because with Parkinson's no one person is the same.

But in my heart I had promised him that I would take the marriage vows seriously. The 'for better for worse, in sickness and in health, till death us do part' bit was sacrosanct, and I feel I have broken my promise to him and let him down.

Learning to adjust

Interestingly many old friends say that I soldiered on far longer than most people would've done under the circumstances. They add that it makes no sense and won't do any good to beat myself up about a situation which had spiralled way beyond my ability to cope. Mark is now in the best possible place for him, with all his needs being met, so now is the time to get some aspects of my life back.

Do I agree? I'm not sure at the moment. 

I suppose old habits die hard, and it will take time to adjust to a more leisured approach to daily life. The best thing for now is to take a day at a time, and not worry too much about what I should or shouldn't be doing, thinking or feeling.

Nevertheless, I do feel like a rudderless ship, having been blown off my plotted course. Possibly I will discover what is out there, once I've plucked up the courage to look over the parapet: is the world round or flat, and will I reach new horizons?

Get support

Our helpline and local advisers can support anyone with Parkinson's, their family or friends. Call 0808 800 0303 to get in touch.