Stories

"My mother had a diagnosis of Parkinson’s for 11 years. 8 years after her diagnosis she developed significant swallow issues after a change in medication left her with lots of side effects. Initially she was eating very little, and I wasn’t given any advice, but I gave her soft, wet foods that required little chewing and could be eaten easily. She wasn’t interested in eating and lost weight. For a short time I used jars of toddler food, very soft and mushy and produced for little people who have not developed their swallow fully. Which to me seemed a good interim food source. The GP was horrified at what I was doing and told me she wasn’t getting enough calories that way. But she was getting more than from eating nothing! She was prescribed Fortisip, which certainly helped a lot. She moved onto having soft mushy meals and soft calorie full desserts like mousses or trifle. Once she had gained weight and was back on track with her medication things got better and her eating improved, and it seemed the swallow issues had resolved themselves.

Her Parkinson’s had progressed and a few months after this she had to move into a nursing home. Initially she did really well and gained weight, enjoyed having carers and nurses around to support her and showed interest in food and eating. Her appetite was small, and she took a while to eat every meal. Her fluid intake (never big throughout her life) decreased, and she found it hard to drink a whole cup of anything. I had connected her loss of interest in food with the fact that her loss of smell had made food just not interesting, and that eating made her tired. Then things declined, she was very lethargic, losing weight and not eating much at all. She ended up being admitted to hospital for tests and a thorough check up. They decided she should have a fluoroscopy, which showed that her swallow was significantly compromised. It was obvious to me then that she had hidden her swallow issues behind “I’m not hungry” “I’ll enjoy that later” (if I had taken a cake for us to share when I visited). I was asked if she drooled, and said no, as I hadn’t observed it. Soon after that I noticed the signs…she constantly dabbed the corner of her mouth with a hanky, and she did drool - but hid it. I went to visit one day and walked into her room as she sat in her chair…she hadn’t seen me, but I could see a long thread of saliva ‘flowing’ down onto her skirt. When she saw me, she simply closed her eyes. We did not talk about it, but I knew what I’d observed. Having been made aware of the swallow issue the hospital put her on a pureed food diet. She hated it and talked of the “brown stuff, the white stuff and the green stuff.” In hospital that is exactly what it looked like and the portions they provided were far too big and so overwhelming.

The nursing home she was in were very helpful and prepared amazing melt in the mouth cakes. Mum was given the same menu as everyone else, then her food was pureed and reformed and made to look appetizing. (No brown stuff, green stuff and white stuff!) The pureed and reshaped tuna fish sandwich was amazing. She gained weight and enjoyed meals much more. Mum loved soy sauce and I talked with her GP about adding that to the pureed food to make it taste more appealing. So, despite her failing kidneys – (“She’s 90” said the Dr “so we won’t concern ourselves about that too much”) she had soy sauce and as the consistency of her food was easier to eat her appetite improved. She ate a lot of ice cream and soft mousses and puddings too. She never needed to have thickener in fluids which I think she was pleased about that. A cuppa was still the same! I work with speech and language therapists and when I talked with them, they suggested I look up some ‘bite and dissolve’ foods. That would help the ‘mouthfeel’ of what she was able to eat to be more appealing. So foods like Quavers, biscuits for 8-month-olds, pink wafers, party rings and chocolate buttons became favourite treats. It meant with every meal she had a few quavers to bite and crunch on – which lifted her mood no end – as her food was more textured.

Life was not unstressful and I got a call one day from her asking me to find a new care home as they didn’t want her anymore. I asked why and it turned out she had been really stressed at lunch that day. It was a roast. She coped with the shaped meat, the piped peas, and the mashed carrots. I heard from the matron later that Mum had been really stressed and feeling very angry that the staff wouldn’t give her a crispy roast potato. They offered to hollow out a potato, mash the middle then fill it and let her eat it out of the crispy outer part. All she wanted was a roast potato. She was taken back to her room and later called me. I spoke with both her GP and the Matron, and the decision was not to stress her but to enable her to have something like that if it caused her so much stress. I felt it important for her to know if she really wanted something she could decide for herself. Chances are she wouldn’t be able to swallow it – but I also knew the staff would be vigilant if they knew they had given her something not really suitable. Difficult decision but the right one for my Mum. Due to her swallow difficulties and her general dexterity issues and strength I had sourced cups for her with a cut out for your nose. They made drinking much easier as she didn’t have to tip her head back. But they were plastic, double handled and looked strange so she didn’t use them when a friend visited. A little time before she died, aged 91, I found a product called a Handsteady that had a swivel handle, so the cup tilted, and she found sipping from it really easy. I am so pleased that her last few drinks were drunk out of a cup that looked like a normal china mug. All the way through her swallow issues she never had trouble swallowing her medication…some of which were large capsules. Madopar CR, she called her ‘Horse Tablets!” I can only assume that as over the years she had swallowed so many tablets that her throat just knew what to do!"