The Stresses of Dealing With Alzheimers Dementia…

We had a bad week. My Nan’s blood pressure dropped, she was faint and dizzy with no energy. It ended with her being admitted to hospital to combat an infection.

It was there that we finally got to find out the status of her cancer. It has spread but no more than the scan in April, so that is something. However, the Doctor made it clear that is wasn’t good.

I spent a day trying to build her up to get her through an appointment with the Palliative Care Team, only for her to be pain-free whilst they were there and in agony shortly after they left. So no special pain patches.

It is so hard to find anything that she interested in eating. Her appetite is that of a sparrow. Recently we have observed her breaking the food into small pieces so she thinks she has eaten more than she has or chewing but taking it out of her mouth. The hospital dietitian told me that is the trick of an anorexic.

I made her some scrambled egg on toast. Well 2 tablespoons of egg and half a slice of buttered toast. She moaned over every mouthful. I tried to put on some ketchup but they didn’t have any, the best I could do was a toffee flavoured dietary drink. I felt bad passing it off as ketchup but she finished the egg and ate probably half the toast, so it worked out in the end.

I keep trying her on different yoghurt and high calorie single pot desserts. We had some success with fruit yoghurt but only for a short time, after a couple of weeks she wouldn’t touch them.

I tried a different tack and trawled the supermarket for sour desserts, in particular gooseberry fool which I’d heard of but had no idea what it is. I eventually found it in the second store I tried. She is now a fan of gooseberry fool and lemon fool which are a mousse. She will also eat a small pot of petit filous style yoghurt but only occasionally.

For lunch I gave her a quarter of a banana chopped small with a spoonful of ice cream. She ate the ice cream no worries but the banana was a challenge as she said it was all black. It wasn’t until I showed her the rest of the banana and proved it was just the middle that she ate it.

I gave her quiche and vegetables for dinner. I tried her with boiled potatoes, carrot slices chopped small and broccoli. I wanted to see if she was struggling with textures so I gave her whole vegetables and also mashed some together using a big dollop of marg for extra calories. She favoured the mashed veg and ate the whole slice of quiche which was only a small slice, but randomly she covered the plate in beef gravy so maybe toffee sauce wasn’t the weirdest thing she ate that day.

For dessert she had a couple of peach slices in syrup cut up small with the rest of the sliced banana, a spoonful of ice cream and the rest of the toffee drink poured over the top. That went down well.

I tried to give her something to eat about every hour and in the end she had managed to eat more in one day than she had in a long time.

We go to see the dietitian this week, they have sent her samples to try of various flavoured juices, flavoured milks and desserts, all of which are high calorie, to see what she likes so we can order them. She seems to like most flavours of the drinks and desserts which is good.

At the moment she will drink one of the milkshake style drinks almost all in one go but complain the whole time it is too much for her to drink. It can be entertaining when it isn’t wearing you down!

It isn’t about getting her to put on weight, it’s about stopping her from losing any more. Although I have no idea what she actually weighs, I was told 69kg in January, 60kg in June but in hospital last week she was 42kg which seems frightening.

After 3 days of being pumped full of fluids at the hospital she was feeling good. Now they are starting to wear off she is showing signs of deteriorating again, unless we can get her to change her ways and start eating more. Which is easier said than done.

Unlike what I have read about some people with Alzheimer’s her issue is not forgetting to eat. She will say everyday at around 5 o’clock what are we having for dinner. She knows she needs to eat. Her issue is her mind is stuck in the loop of years ago, pre-cancer when she was a large woman who ate a full plate of dinner and food throughout the day.

She says she makes a dinner every night and eats all of it as she enjoys her food but the reality is she barely eats anything and can barely remember how to cook. She claims to eat sandwiches, although she hasn’t eaten one in years, she barely touches meat and just even eggs seem to be off the menu. Either I make something for them or my granddad cooks. We are slowly showing him how to make basic dinners and he is coping well.

We met a dietitian in the hospital who told her she needs to listen to her granddaughter because she knows what she is talking about and she needs to eat the food we make her. It was nice to hear I am doing the right thing.

I’m quite bullish with her, I won’t let her get away with pushing the food about and playing with it. I watch over her to make sure she eats it, no matter how long it takes. It feels wrong to be tough with her but I think sometimes she responds better to being tough than suggesting she eats.

She also seems to eat better if food and drink just appear without asking whether she wants something. I often don’t tell her what it is as she seems to have an excuse for why she can’t eat it if she knows what it is. I just tell her it’s good for her and she needs to eat it.

She is starting to be more like a toddler than an adult, you have to think what you would do with a small child and that seems to work better. Only she doesn’t always respond to the 2 more mouthfuls and you can leave it routine. When she only eats 2 to 4 small mouthfuls of anything asking her to eat another 2 doesn’t really help.

She accused me of trying to destroy her life because I gave her a high calorie dessert to eat. I’m not sure how you can respond to that. Most people would see a dessert as a nice treat! I turned around a minute later and she had eaten it all, drunk all her drink and was washing it up so it couldn’t have been that bad!

Her outbursts are becoming more common. She swears a lot at me and Granddad but I think that is because we are the ones who are around the most. Still sometimes it is very hard to take. Sometimes you can just walk away and remember it’s not really her but others it is hard to not want to say something to her, even though you are wasting your breath.

Her trip to the hospital really took it out of me. I was doing the running around, visiting, cooking and shopping with Granddad, only to get to the hospital and be told to ‘F off’. Charming! She thought we were all enjoying ourselves instead of having sleepless nights, stress, worry and feeling like a zombie. I had to take a day to myself when she was released as I was so physically drained I didn’t feel safe to drive.

I came home the night before and got my key stuck in the door, it just needs a little wiggle and it comes out but I was so worn out I burst into tears. It took a good 5 minutes of heavy crying for me to calm down, all because I couldn’t take a second to get my key out the door. I don’t know how I managed to drive home that night I was barely awake.

Luckily we had already arranged for my mum to get her from the hospital as she had only been cleared to go at visiting time and they needed time to get her ready to leave. She wasn’t even ready when my mum got there to pick her up even though they knew what time she would be there.

This is likely to be the future for us. The doctor said she will probably get more infections which will be harder to recover from and need longer stays in hospital. Eating and drinking more would help to starve that off for a bit but who knows when the cancer will grow again or where.

I worry about the change in weather. The hot summer days have already passed her by in 2 piece woollens, thick jumpers and winter coats. What will she be like when it is actually cold?! I guess that is what happens when you shrink to practically skin over bone, a talking, walking (shuffling) skeleton if you will.

I’m hoping that once the appointments quieten down I will at least be able to start job hunting again. Not having anything to do other than being a carer isn’t always easy. Especially when I don’t qualify for financial assistance. I’m not even sure I could do part-time work as the appointments can be on any day of the week.

At least I have my writing and hobbies to keep me relaxed and that helps to make me feel a bit more useful. There is the possibility to do a few small things on that front which will help a bit at least. Other than that, someone always needs something done so I can be in demand as a lacky at least!

I think maybe that’s why it gets to me so much when she accuses me of trying to kill her. She has no concept of the fact that I have put my life on hold to look after her, when I needed to be building my career. I will now have a big employment gap and need to find a way to cover it up without making me look like I have the possibility of being unreliable. It worries me sometimes but as I couldn’t have planned for what happened to me leading up to where we are now there is nothing I can do about it.

In the greater scheme of things the current situation won’t be forever. I just need to make the most of the time that I have now and hope that in the future it won’t hold me back too much. That really would be incredibly unfair.

 

 

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