Episode 2: Interview with a Caregiver

1) What is your name, and would you like to stay anonymous?

I would like to stay anonymous.

2) Who is the person you are caring for? Why are you caring for them? 

My dad who is 91 and was diagnosed with dementia 6 years ago.

3) What does a typical day look like for you and the person you care for? 

I wake my dad up around 7:30 and start getting him ready for to go to his adult day care. He can dress himself but he needs help and prompts or he will forget and wear dirty clothes. I also have to put the pad in his underwear because he has no idea he needs one. I also have to check to make sure he hasn’t soiled himself and if so, I clean that up. He has a portable urinal by his bed that he uses at night so I empty that and clean it every morning. Then I make his breakfast and put out his pills. I have to remind him frequently to drink his water and take his pills. I also remind him to go to the bathroom about 10 minutes before his VTA Access Van arrives, I remind him a few times but most days I have to make him take his pills and go to the bathroom or he gets distracted. After the van picks him up, I go to work. The van brings him home around 2:30 at which point my husband who works from home, gives him a snack at the dining table. Dad reads books, watches TV or sits outside until I get home around 6:00. My husband or I then make dinner, I get dad’s pills out etc. After dinner we read, or I will have dad fold his laundry, or if it’s warm enough, we might take a short walk outside with his walker. I start getting him ready for bed around 8:00. He needs help brushing his teeth. At night I have to put a different pad in his underpants and check to see if he needs any cleaning down there. We put his hearing aids on the charger, put on his pajamas and I tuck him into bed.  

4) How did you end up in a caregiving role — was it something you chose or something that found you? 

It found me, although I would have done it anyway. My brother lost his eyesight almost 10 years ago so it would be really hard for him and his family to take care of my dad. My sister helped for a few months but then she lost her husband it’s hard to take care of my dad alone if you have a full-time job.

5) What's something about the person you care for that most people wouldn't know? 

My dad was an early computer programmer which is highly mathematical. He doesn’t remember much of that now but his early childhood memories of growing up on a farm and much more accessible to him. He was also an accomplished ultra runner and those memories have faded as well. As his dementia progresses those accomplishments mean little to him, what he remembers and what seems to matter are family and a few friends. 

6) Is there a small routine or habit the two of you share that helps the day go more smoothly?

Keeping consistent habits are helpful and singing songs. He never sang songs when I was a kid but with his dementia, he really likes old music from his childhood. 

7) Has there been a moment when you had to let go of an old routine and find a new one as the illness progressed?

Most of the changes have been gradual so it’s hard to come up with one thing. The main thing is having to do more over time. One noticeable thing though was a change in the opposite direction when we took him off a medication and his swallowing got much better.  That was a huge help because it was extremely stressful when he would choke while eating. Now he doesn’t choke at all. 

8) Are there any rituals around meals, mornings, or bedtime that have taken on special meaning?

Songs and sayings help in the morning. I usually use phrases he used with us as kids when I get him up in the morning.  Also there is a telephone pole you can see from his window and every morning when I open the curtains we look to see if there is a bird or squirrel on it. That helps him get his day started. 

9) Is there a phrase, song, or gesture that seems to calm or reach the person you're caring for, even on hard days?

In the morning I sing, “It’s time to get up, it’s time to get up, it’s time to get up in the morning” and when we get in the car we sing “well we don’t know where we’re going but we’re on our way” and lots of old phrases and songs like that. 

10) Have you invented anything yourself — a trick or workaround — that isn't in any guidebook?

Probably most of things I do are in books somewhere, but having him walk in place before he walks after getting up from sitting so he doesn’t fall when he walks, putting his pills on a dark plate so he can see them due to the contrast with the light pill color.  Using sweet drinks (with Splenda) to get him to drink enough fluids has been super helpful. Hydration is so important for many things but avoiding a UTI is critical. Oh and I installed a bidet which is very helpful for accidents. 

11) What's something you wish someone had told you when you started this journey?

He isn’t the same person he was, he is a different person now and can’t do the things he could, not even the most basic things. I think it’s easier for children who are taking care of a parent to get that. Spouses seem to hold onto the past person longer. He is still my dad and still very connected to me, but I have to think of him in a different way.  Also that it’s really hard, 24/7 and all consuming. You get used to it over time but it feels impossible at first.  It does have meaning and purpose though, in many ways more meaning than our careers.  

12) Is there a ritual that's just for you — something you do to take care of yourself in the middle of caregiving? 

Not really, it’s all consuming between this and my full time job. I do have someone that helps on Saturdays and sometimes my dad goes to my brothers so I can get a break, but it’s not much and I don’t have freedom. A few hours here and there don’t provide nearly enough of a break.The only real ritual I have is I try to hike with my friends on Sunday mornings while my dad is asleep and my husband is home to watch him. 

13) How has your relationship with this person changed since caregiving began? 

Absolutely. I am 100% responsible for him, and have to live in his new reality. There is a phrase in caregiving “meet them where they are”, you have to live in their reality and adjust how you interact with them to their new capabilities. 

14) Is there something you do together that helps you both feel like "yourselves" rather than patient and caregiver?

Hard to come up with anything right now but I know sometimes little things will pop up. I’ll let you know if I think of something. 

15) If another caregiver just starting out could learn one thing from your experience, what would it be? 

Embrace the concept of “meet them where they are” as quickly as you can. Remember they aren’t functioning as they used to and can’t do many many things. You have to accept that they are like a child in many ways, except that they won’t learn things like a child does.  I would also advise people to see what financial resources they can get signed up for. Caretaking will drain you financially if your parent didn’t plan for it. 

16) Is there anything about your experience you haven't been asked about but wish someone would?

Aside from my husband and a few very good female friends, people haven’t asked how they can help. The problem is that it’s not easy help like doing some grocery shopping. The most helpful thing would be if his friends would take him out to a park to walk or sit at at bench and eat lunch with him. He likes to walk and be in nature. It would be good for him to see his friends and it would give me a much needed break, but it’s very hard emotionally, intellectually and even physically in some cases, for people to know how to interact with someone with dementia.