(Editor’s Note: Today, we welcome a new family caregiver to our family. Dilys shares her days with as she cares for her mother (“Mum”).)
A typical weekend morning: I woke up at 8 a.m. I felt like sleeping more but I always feel like I have to get up and justify my existence. So I got up, made coffee, fed the cats and dog, and had my breakfast. Then the weekend aid came out of mum’s bedroom and said mum had spent most of the night, up until 4 a.m., talking, wringing her hands, trying to jump out of bed.
At 4, she fell asleep quietly and was sleeping still. I decided to let her sleep until 10 even if it put her off schedule for all her medicines. I didn’t want her to sleep more as that would be too many hours without liquids. So at 10 we woke her up, tried to get her to take her medicine for her stomach. She just held it in her mouth. Since it’s a capsule, I don’t know how effective it is chewed up and not going down whole into the stomach.
She then had a bath and then we began trying to get her to eat breakfast so that she could take her other medicines. She refused the sweet roll and coffee. So I got a pineapple Popsicle and got her to eat it with a lot of persuasion, but she finally finished it off. Lots of ‘I don’t want it’. ‘Just a bit more, just one more bite’ until finally it was finished. Then we took her out on the veranda where it was a bit cooler and got her to take her Parkinson medicine. After that, Emily got a dish of coconut ice cream, stirred it up, and managed to get that down her with the medicine for her circulation. She’s now lying down on the sofa on her side to rest the incipient bedsores on her bottom.
Meanwhile, I cooked up a batch of prunes for her and made her her favorite pudding – tapioca pudding. It’s now in the fridge, chilling for lunch. I’m planning on making her a potato soup to get more liquid into her. It’s a constant, very tiring battle getting her to eat and drink. She’s worse these last few days as she is not sleeping, but getting all confused and excited at night. We’re right now in the middle of a heat wave so I wonder if it’s causing the confusion or at least contributing to it. I check her diapers, she’s urinating, there is no smell. If she has an infection, it’s hidden and as she won’t/can’t take capsules anymore, it would mean being hospitalized. I’ve decided not to rush her to the hospital, as there is no evidence of an infection aside from her night confusion. (i.e., no fever, urine a normal colour and smell ). As well, since she has Parkinson’s which causes confusion, and takes levodopa which also causes confusion, it’s not easy to say it’s an infection. I feel like I have to have the wisdom of King Solomon to make some of the decisions I have to make.
This past week we went to see her geriatrician with the results for the blood tests. We didn’t take mum and it’s a good thing because we sat waiting for 2 hours to see her. The blood tests show mum is no longer anemic, but still has a slight protein deficiency. Her ureia is higher than normal which means she needs more liquids. Since her bedsores have healed up, and the sores on her legs as well, the doctor said that we don’t have to buy anymore of the supplement Cubitan, which is specifically to help in healing sores. She recommended that mum take an anti-depressive which we are going to try with some trepidation as mum always reacts negatively to these kinds of medicines. The doctor said, however, that it does not aggravate the Parkinson symptoms. The doctor also said to give her any kind of liquid that she likes as she doesn’t have diabetes or high cholesterol, so ice cream with coca cola, milkshakes, anything. So that’s what we are doing! Mum loves ice cream so we’re giving her a lot of that.
As we were waiting, we saw another one of the doctor’s patients, an elderly lady obviously with Alzheimer’s. The doctor said to us, “I don’t know which is worse – dealing with advanced Parkinson’s or with Alzheimer’s”. Both are very difficult and basically sad!! So Jesus na causa! (only with Jesus).
Emily and I are hoping to take a 4 day holiday this month, but if mum gets worse we won’t be able to go. We planned it because it looked like mum was stable, but today has got me worried. So I would ask the pray-ers to pray that we might have this little respite.
Mum will be 94 on the 27th. Dona Vilma has already said she will supply the cake. I see we are going to be celebrating this year!
Welcome to caregiving.com! I think you will find this site helpful, and it is good to get one’s feelings out from time to time. I care for my husband who has a serious neurological disease affecting his cerebellum. There are all kind or repercussions to that. In three and a half years he has gone from still working to a wheelchair. I agree “only with Jesus” can I make it; but it is still difficult, right? I pray you will be able to have your vacation respite.
Hi Dilys–Thank you for sharing your days with us! You have learned so much in caring for your mum; I’m so glad you’ll be able share that knowledge with our visitors. I, too, hope you and your daughter will be able to enjoy a respite. I hope today finds all of you doing well.
Dilys,
I responded to your post about your mom’s teeth and then read this one to find out more about your mom. I see your mom is 94 and has advanced (?) parkinson’s disease and doesn’t eat much. This is what I know for my dad who was 87, had moderate alzheimer’s disease and didn’t eat much.
When I first became his primary caregiver a couple of years ago, we rushed him to the hospital if he got sick, took him to all sorts of doctors, etc. Then as he started to not eat, I tried everything to get him to eat and drink just a little more, even if he said he was full or his tummy hurt. I agonized over it.
But with reading about the process of dying (which at 87, dad was and at 94, your mom may be) I read that when you get nearer the end, your body sort of starts to shut down and you don’t want or need as much food and drink as you did. Dad went for quite a few months not eating or drinking much and he did not feel bad from it at all. When I could internalize that, I quit worrying so much and it was better for both dad and me and he was fine with it. I’m glad I gave up on trying to keep him alive and just concentrated on making him as comfortable and happy as I could and enjoying the time with him. When he was having stomach pain at the end, instead of rushing him to the ER we just gave him pain medicine enough to control the pain. He went peacefully in bed with the family around him and that is the best we could hope for, I think.
Have you talked to anyone from hospice? Dad was on hospice care for about the last 6 months of his life and it was the best thing we did. They kept him comfortable, checked up on him and helped us with the various things we needed plan for and take care of. I can’t speak highly enough of hospice care and maybe you might want to just talk to a hospice care place and maybe have your mom evaluated by them.
I am very sorry and understand what you are going through. I hope you can find the peace to accept your mom moving towards the end of this life and can find peace within yourself to let go, even when everything in us want to try to fix everything. Let go and let God, as they say. It will be OK.
Take care,
Susie
.-= Susan´s last blog ..Bigfoot Not Dead. Bigfoot Author. Bigfoot Celebrity. =-.
Hi Susie, I realize that my mum is shutting down. She is so different from a year ago, and as for 2 years ago…the difference is immense. However, if she doesn’t drink much, she gets bladder infections which give her pain and make her really confused. Actually, she acts ‘crazy’. Once she tried to bite me when she had an infection. If I only give her the liquid she wants, she’ll only drink a teaspoonful a day which is bladder infection for sure! So, it’s hard to know what to do!