The best possible care, for my husband with Parkinson's
Joan’s husband Gordon was diagnosed with Parkinson’s 32 years ago. 4 years ago, when his Parkinson’s dementia symptoms became more difficult to manage, he moved into a nursing home.
Here Joan shares their story and coming to terms with the situation.
“We started needing more and more help at home,” Joan begins. After arranging for carers to visit twice a day, the couple eventually had carers come in overnight too.
“Gordon suffered a lot with hallucinations and was up all night. He would often think there were intruders in the house.
“The last straw came when I had gone out to my pilates class,” Joan remembers. “Gordon had a urinary tract infection (UTI) and his best friend offered to sit with him. But when Gordon woke up, he thought his friend was an intruder and attacked him.
“Gordon was taken to hospital and that’s when I was told it wouldn’t be safe for him, or me, to be at home anymore.
“Gordon had always made me promise not to put him in a home and I didn’t want him to go into permanent care. But I was very frightened – for myself and other people.”
"...I know he's looked after so well"
Gordon now receives 24-hour, 1-to-1 care in a nursing home. “His primary carer is incredible,” says Joan. “She’s so understanding and I can relax when she’s on duty because I know he’s looked after so well. The staff are all great – they treat Gordon like a member of the family.”
These last few years haven’t been without their challenges. Gordon has been admitted to hospital several times with UTIs, chest infections and pneumonia. Being taken from his familiar surroundings has been very traumatic for Gordon and eventually Joan said she didn’t want him to go to hospital anymore.
The reality of this agreement though, means Joan can be put in a very difficult position. “When the phone rings I dread it. Recently, Gordon had another infection and paramedics were called. The paramedic phoned and asked if I wanted him to go to hospital.
“We came up with a treatment plan, but I feel like I am the judge and executioner in the same breath. I bawled my eyes out afterwards.
“While I hate the thought of what could happen, I want the least discomfort for him.”
I still have to distract myself. I do pilates, I play badminton and have lots of friends. I go for walks with my sister and brother-in-law every week...I know I need to look after myself – because if I’m not well in myself, I can’t be there for Gordon.
Taking it's toll
Coping with Gordon’s health has taken its toll on Joan. “I have lived on my nerves for the last few years,” Joan admits. “It started when I realised we would have to get carers to come in – things tumbled out of control.”
Eventually Joan confided in a close friend about what was happening at home. “We’ve been friends for 60 years and we talk everyday – I can tell her anything. She suggested I needed to speak to someone about how I was feeling.
“I actually went to see my GP because I wasn’t sleeping at night. But after talking about everything, I was prescribed medication to help manage anxiety.
“I still have to distract myself. I do pilates, I play badminton and have lots of friends. I go for walks with my sister and brother-in-law every week, who have been a rock of support for me.
“But I know I need to look after myself – because if I’m not well in myself, I can’t be there for Gordon.”
I know I’ve picked the right care for Gordon. It’s the best thing I’ve done for him as he now has the constant care and attention I couldn’t always give him.
Feelings of guilt
Joan continues to visit Gordon, keeping to a regular visiting pattern so he remains settled.
“I once changed one of my regular visiting days, but Gordon’s behaviour got very bad. Now I don’t do anything else on those days because it would distress him too much. But I would only worry if I was away anyway.”
This year, the couple will celebrate their 50th wedding anniversary, although it will be a low-key celebration. “The home does lots of activities for the residents with partners and families, but I don’t take part,” admits Joan. “I feel sad we can’t do these things together at home. I really miss him.
“Sometimes I still think I can bring Gordon home and nurse him here. I know I can’t, I’m not silly, but I will never lose the feelings of guilt that Gordon is in a home.
“But I know I’ve picked the right care for Gordon. It’s the best thing I’ve done for him as he now has the constant care and attention I couldn’t always give him.
“And,” Joan adds, “it’s kept me stronger.”
Take part in research for Parkinson's dementia symptoms
Research teams across the UK are investigating if ondansetron has a meaningful treatment effect on Parkinson's and Lewy Body Dementia hallucinations.