The Reality of Being a Caregiver

Marilyn Durgin, Adult Day Center's Program Coordinator, interviewed Bob whose wife Judi is a member at the Adult Day program. Since Judi joined the program, Bob took the Savvy Caregiver class and joined a Family Caregiver support group.

He shared what it feels being the 24/7 sole caregiver of a person with memory loss and the impact our programs have had on his family's quality of life. His hope is that this interview will help other caregivers to seek help as early as possible.

Bob: I know where I was... and what it was like. And to get some help... It allows me to help more.

Marilyn Durgin: So prior to her coming here it was just you 24/7?

Bob: Yeah... Prior to getting involved in this program, it was a very, very scary situation for me because she started with normal pressure hydrocephalus. That was in 2017 when she just went wacky wobbly. Boy, I could look in her eyes and there was nobody I recognized and it was so scary. I had no place to turn to. I was naive to (the existence of) this program and this problem for the longest time not knowing what I'm supposed to do... Knowing it is a permanent situation... Not having any idea of when it is going to progress. I tried to get some help, you know, and called Southern Maine Agency for the Aging [sic] and then Covid showed up. Everybody was working from home and it was hard to get ahold of anyone and try to talk to anyone to get some kind of an idea what I could do. I was lost.

And the disadvantage of my situation is that our family and friends became distant whether they're afraid to see Judy different from what she always was. I would ask her if somebody called, maybe they were thinking that because she wasn't calling, they would not call. She gets a little hung up on a word every once in a while, and then she gets embarrassed...

Judi was a brilliant, brilliant woman. She had her own business and all kinds of different people working for her. She organized different groups, started different groups in the medical field, she knew people all over the country. She has really done some amazing things in her life and she's helped so many people in so many different ways and now it's at a point where she needs help.

I do the absolute best that I can and there was a lot, a lot of struggles... then the Adult Day Care [sic – Adult Day Center] opened up... In my thoughts, she needs social time other than me. Judi is a very social person and she needs to be around other people, especially women to talk to.

And then this thing (the Adult Day program) opened up and I jumped in a heartbeat. I was all over it. It definitely helps her to keep her mind focused. And many things that they do here to help Judi … playing games and doing different things and these all are important... and then they started a caregiver's group (Savvy Caregiver class) that taught me the reality of everything: things that I knew will happen sometime and someday... it helped me understand what was happening at different stages that I, as a caregiver, can expect to see and how to deal with them as best I can... It's a situation where your emotions get very, very involved. I really don't want her to see me with my emotions really, really down because of the things I have no control of. I do the best I can.

Now they’re having a support group (Family Caregiver Support Group): you get to talk to different people who are in a situation similar to ours. Everyone's an individual, we all have to deal with things differently. Each person on both sides – the caregiver and the person who needs help... by bouncing it off some of us that has the same scenario helps immensely.

Marilyn Durgin: I want to say that when you and I first connected in August, I knew then you definitely needed some respite for yourself. I just want to say that since Judi started (the Adult Day program), and since you took the (Savvy Caregiver) class and joined the support group, I see a little more relaxed person than when you first came here. And you opened more.

Bob: Well because I was so afraid of everything that that was going on... it is tough for me to say this... it was out of my control, I was getting stressed out... my emotions were going haywire. I didn't know what to do... I even told my doctor I would like to get some time by myself. I can't leave her alone because she has mobility problems and if she gets up, she could fall.

Since the caregivers... I have breathing room to take time and understand... It is very, very big... It is hard job and it is difficult be at your best all the time... But this has helped immensely... and I would recommend the exact same steps that I took to anyone that is in this situation and you don't know what to do. Learning all this information makes it a lot easier for me and I think it makes me a better caregiver, it lets me be my own person again.

Marilyn Durgin: As you said... talking to friends and family... they only have an opinion but with the class and the support group you are with people who are in the same situation as you are...

Bob: That is right... They are walking down the same path that I am and I may have had an experience and how I dealt with it today, yesterday or last week. Somebody else... very similar situation and the things that they were able to do for their loved ones or for themselves to try to get over the hurdle... I mean every day there are new things that can come up and how they have to be dealt with and the information that I've learned gives me a chance to think how to handle this today. Today! Not yesterday... and in what kind of mood she is today, how she is feeling today... it is a really interesting thing. I wouldn’t wish it to anybody but if anyone is in this situation, they have to talk to professional people, somebody like Lori who is an encylopedia of different situations and what is recommended to us as caregivers to try to deal with the situation in a healthy manner.

Marilyn Durgin: How do you feel since she’s been attending the Adult Day Center... how are things for her... and for you besides giving you respite?

Bob: From my point of view, it has done very good things for her: she gets to socialize with different people and it's helped her mind work a little bit better by getting out and getting her to move... the more she does, the better for her. When she is at home, I cannot get her to do any activity... and she played sports back in the days, she was active. When she comes back (from the Adult Day program) sometimes she tells me... especially if she won. It helps me as well because it gives me a chance to talk to her about her day... it enhances the conversation we have. I think it helps a lot.

Marilyn Durgin: I agree, she has blossomed since she joined the program.

Bob: The fact that friends and family withdrew for whatever reasons they did they have to live later. If somewhere down the road they decide to go see Judi, they have to be prepared when she looks at them and asks them Who are you? Because if they don't take care of business now they're going to miss out on it... That kind of bothers me... But she does have a couple of groups. She went to high school with some of them and even grammar school... And they talk about all kinds of different things that they did as children and they all grew up together so they get together once a month. And I am blown away at what she remembers from her childhood but she does not remember what happened yesterday. Those are very important for her and for me.

Marilyn Durgin: It is not easy to be a caregiver 24//7 and it is important to know that there are resources out there such as the Southern Agency on Aging...

Bob: It's very important for me it's a program that I can afford and the expertise of everyone that I've talked to here at the Agency, I’ve dealt with in this program, is top notch. And Judi gets treated with respect!

To learn more about our Family Caregiver Programs and Services, visit: https://www.smaaa.org/resources/caregiver.html

Visit Adult Day program webpage and connect with Marilyn: https://www.smaaa.org/adultdaycenters/index.html