Ginny

Ginny
Age at interview
56
Age at start of caregiving activities
52

Ginny is married and has two grown children. She enjoyed her work as a principal at an elementary school but took early retirement when she felt that she needed more time to care for her mother who suffers from arthritis. Ginny’s mother eventually moved in with Ginny and her husband when she required more frequent care. After her first hospitalisation, Ginny’s mother moved to an intermediate care facility where she waited two years for placement in a long-term care home.

Ginny’s father passed away 16 years ago and Ginny’s mother was able to continue to live on her own thanks to Ginny’s support. However, as her mother’s condition deteriorated, it became clear to Ginny that she was no longer able to live alone. Ginny and her husband first invited her mother to stay in their place for a two week period while keeping in mind that her stay could be prolonged. Ginny’s mother initially did not want to move, but understood after two weeks that living with Ginny and her husband was the best option.

During that period, Ginny was still working full-time so her mother qualified for 45 minutes of public home care service. As soon as Ginny realised that this support was insufficient, she started looking for alternative options. She arranged extra privately paid help for her mother as well as a place in a daytime program. Nevertheless, the frequent change of caregivers for her mother in addition to the difficulties of arranging timely care and transportation to the daycentre were stressful for Ginny. She took some time off work to look into other possibilities, and while spending more time at home she realized that her mother had reached the point of requiring 24/7 help. Ginny was unable to provide this while working full-time. She first explored the possibility of working part-time, and then, when this was not possible, she took early retirement.

Ginny’s mother’s health continued to deteriorate, and after several small strokes (TIA’s), she became dependant on a wheelchair. After her first hospitalisation, because of strokes, Ginny’s mother went to an interim care facility until a place was available in a long-term care facility. Although Ginny is satisfied with the care that her mother has received, she would have appreciated a proactive approach concerning the progression of her mother’s illness instead of a reactive one. She feels that the care provided for her mother was often a step behind her actual needs.

Ginny explains that she has a supportive family and good friends who try to help whenever they can. However, since she is the only family member living near her mother, she is frequently responsible for her day-to-day care. Because of this continuous responsibility, Ginny feels exhausted and stressed, and she would find it wonderful to have the opportunity to take a break from it. Her physical health has also been affected by her caregiving situation and in response she has started to take long walks on a regular basis with her sister-in-law. Ginny continues to provide care for her mum with the hope of managing her needs and keeping her happy in spite of her difficult situation. Helping her mother has made her realize the importance of trying to do something positive for others every day.

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So my father passed away about 16 years ago, and my mother was still living in her home. We noticed that it was getting more and more difficult for her to walk down stairs and do things with her hands—her hands were getting swollen and she was getting more and more arthritic, and it was more and more painful.  So, my brothers and I decided that she would be better off if she was living with me because I’m the only sibling who lives in this town with my mom, or she would be living on her own. 

At first she wanted to live on her own, and so, we sold the house and she moved into a condo. Very quickly we found that she wasn’t able to make meals; she wasn’t able to stand on her feet for any length of time. So, it became more and more difficult. First of all, she was coming over to our house for meals and then I would take her home after that. But, between work and taking care of her it was very difficult. So, I started preparing meals at home and we would have supper, and then I would take a meal to my mother’s and she would have supper, but she didn’t like to eat alone. So in the end, we brought her over to my house and it started by, “Mom would you like to come and live, stay with me for a couple of weeks?” So we prepared a room. My husband and I knew that it would be more than a couple of weeks, but for my mother who was very independent at that stage, she thought she was visiting and that was good because we didn’t have to go through the turmoil of making her upset.

So she came to visit for 2 weeks and then we started slowly bringing some of the things that she needed from her home. For example, when she was having her bath or her shower, I brought a little seat that she could sit on for her apartment. We would bring that over, and we had it now in our home, and then after a couple of weeks, she wasn’t asking to go home. And so I just said, “Mom would you like to stay with us for a little longer?” And when she said, “Yes, if you’ll have me.” I knew then that she herself was ready to accept the help from my husband and myself.

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I love to go for my walks. I try to get a buddy to go for my walk. My sister-in-law is actually my buddy, my walking partner. We go for a walk every morning quite early because she’s still working. So I’ll get up and I’ll go for a walk with her. Then that will start my day. We keep each other motivated. In the winter, last winter, we started cross-country skiing, my sister-in-law and I.  We really loved that, but the only reason I could do that was because my mother was already in the interim care centre and I knew that she was being taken care of. So once my mother was taken care of, I could start to do a few more of those things. 

This winter I’m hoping to get out and do more cross-country skiing and continue with my walking. I felt like I just started really enjoying the cross-country skiing and getting—I wouldn’t say good at it—but starting to feel that I could stand on my skis and be able to get from point A to point B. Then summer came; the snow stopped and we started just walking again. […]

You never know when the next crisis is going to come. That’s the problem. Then everything stops and then life is sort of on hold for a little while until things get back to normal. That happens when you have something like recurring TIA’s or a fall. Those crises happen more and more. But I am trying. I have a piano at home that I started to play a little bit more, but again, when you’re in crisis mode I find that it stops as well. 

And lunches with my friends. I know I can always call them and we can go out. They’re texting me or e-mailing me. I have a group—we call it our book club, our circle of friends—and we get together once a month. I’ve been there a few times. We meet at each other’s houses and I think I’ve met with them a few times—maybe three or four times—which has been really nice. I love to have that social contact with them. My husband and I, we did go for a little holiday, but then when we came back, my mother had another TIA and that’s when my I called my brothers and they all came. So, we’re in crisis. We’re just starting to get out of crisis mode now.

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When we went to visit the gerontologist, they gave us a lot of information about dementia, arthritis, supports, but I just found that all of those supports that they mentioned were supports that were sort of almost too late. They were almost too late. My mother was already almost out of that stage. So, you just get the wheelchair with the feet…They would send me to the home healthcare and they would come and measure her for the wheelchair that was just going to be perfect for her, and then as soon as she got that and she could use it with her feet to move, she was already out of that and ready for the next stage. And then, they measured her for a wheelchair that would support her head more, that she could lie back and recline. And as soon as she got that we found it wasn’t very long when she was…when her head was leaning to the side. And so, it took a while to get the wheelchair that had the supports on the shoulders. So, it just seemed that it was always a little bit late. It wasn’t sort of proactive. We’re always reactive. I would like to see a little more in the way of proactive; before she needs it, before she outgrows these things already.

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I think there was lots that could have been done when my mother was living with me, but I didn’t know about the supports or it took so long to get them. I remember making an appointment for someone to come to my house, and to get the caregiver to come to relieve me even when I was going to work, and so she came and she did some tests with my mom. And then she said, “You qualify for the 45 minutes,” and it took so long for us to get that and then to find somebody to be there. And then, when they found somebody to be there, I found that that person didn’t come—it was somebody else who came, because they weren’t the same person every day. It was just very, it was very difficult. It was very difficult to for me to have somebody new every day, because I had to, I was explaining every day what to do or where to find the sandwich in the fridge or how to help my mother, and I just found it very time consuming. I found that I might as well do it myself, because it was—if I could have the same person or even just switch off one person, 2 people and both of them would take it. But I just found that it was just too difficult. And so in the end, it was either friends I counted on who knew my mom or me. I still had a person come 3 days a week for my mom when I was—I tried to take on a part-time job. In my position, I couldn’t have my full-time job anymore, but I could do something on contract. And so, I tried to have a caregiver come 3 times a week for an hour, but I paid for that myself. And even there, we got used to one person and then they changed, and then they changed again. So, that’s really hard when you’re used to one person. And I think my mom found it really hard too, because she never knew who was coming or what was happening.

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The medical care, I can’t complain about it because I do feel my mother has received what she needed. But, I also have a friend who’s a nurse practitioner and I’ll very often say to her, “Would you come and have a look at mom?” She was the one who commented that, when my mom’s lips were getting dry, “Put this on it,” or, “do this for her,” or, “ask at the hospital for this.” I don’t have a medical background and it’s so nice to have a friend who can look at my mom and say she needs this or she needs that. And my nephew’s wife is a nurse, has a nursing background. So when she comes to visit, she’ll look at my mom’s bed sore and she’ll tell me about what to do about that. Or she’ll go and talk to the nurses and ask. And you don’t know if you’re crossing a line, or you don’t know if you should be doing that, but it’s my mom and you want to do whatever you can to make her more comfortable and to make these days as anxious free as possible.

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It was very difficult for her to do any buttons or zippers or put her socks on, things like that. It became more and more difficult as time went on. And we found that 45 minutes just wasn’t enough. I would leave and the person wasn’t there yet and I would be worried about leaving. Then I found about, through the research that I was looking at, I found out about a group that met out of the house at one of the care groups in town, and I could get her transit to and from this care group.

So we started that, but if the person from the place that was helping her dress and get cleaned up and everything, if they weren’t leaving at the same time as the bus was coming, she would miss the bus very often because she was very slow getting dressed. So, it was not very good. So in the end, I started to pay myself for a caregiver to come, after the city caregiver came, to help her to take her right to the place where the care group was and bring her home an hour later. So I paid for a half hour to take her there, and then a half hour to bring her back. And it wasn’t as much the money as it was the timing of everything. It was just so difficult to time, and with my mother being a little bit slower, it was just all very difficult. So I decided that I was going to have to take some time off from work and help my mom myself, and see what other things I could put into place for her.

I felt that she was just losing out. And as I said, that one group that I tried to get her with, she loved it. It was like sending her off to a little daycare. In the morning, I prepared her lunch or sometimes she had lunch there and I paid for it, and then she came home and she really liked that. But then she had her fall and that stopped.

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I think, yes. I think it’s to really look on the positive side and do something positive every day for others. I just so appreciate when somebody does something for someone else, whether it was my mother or whether I saw somebody doing something kind for somebody else in the care centre. There’s nothing, I think, that is nicer than seeing somebody who needs help get that help and be more comfortable and happy. Making a person smile, there’s nothing more pleasant than that. 

I thought I would find this very difficult, and some questions I did find very difficult talking about. But I think I’ve shared a lot. I feel that I’ve covered almost all of the points that I think… My mother is one of the lucky ones, I think. She has family; she has me. But when I look around at some of the places, there are people who don’t have anyone. I think if there’s something that we can do to brighten someone’s day who doesn’t have anyone, I think that would be something that would be important. And I know how much these people love the people who work here. They become like a family and the person-to-person contact is just so important. I think those people who don’t have anyone deserve to have somebody come and visit them, or bring them a flower, even just talk to them in the hallway. And I know I try to do that, and I know that my daughter tries to do that.  If somebody looks like they need a little bit of help, we’ll offer. And that’s one thing that I never would have thought before. I never would have thought to offer my time in a nursing home. But I certainly will now. And even when mom passes, I hope that I would find that little bit of time to do something for others.

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For caregivers, I think, one of the best things that happened for me was when my brother came up for two weeks, and my husband and I went on a holiday, and my brother and his wife came up and stayed with my mother for two weeks. And it was wonderful, because I was comfortable leaving her. And I think that if they could do that more often, and just not expect me to even be here, and just for me to go away for a week, that would be wonderful. We, my husband and I, were able to do that once—go away without worrying about her. Even though, other times we have gone, but we’ve relied on my daughter or my sister-in-law, my husband’s wife, and her husband—my husband’s wife…I’m my husband’s wife—my husband’s sister and her husband to take care of my mother.

So that’s really putting a lot of responsibility on them. And then, I’m still calling every night to see how she’s doing, or face timing them. Thank goodness we have the means to do that. Or they would bring my mom over to my sister-in-law’s house for supper and we could face time. So, that is a real bonus for us.