What Does Home Care Really Mean: Can it work, does it work?

By Richard T. Lind, administrator -- Jess Cares: Private Home Care Services

To the vast majority of Americans home care means taking care of Mom or Dad – either at your home or at theirs. In the abstract it seems like it’s something that everyone should be ready, willing and able to do. In reality however, it’s a much different story. And the stories touch just about every family, in every state and every town throughout the U.S.

And it’s not always Mom or Dad. Sometimes it’s a sister or brother, son or daughter, niece or cousin – sometimes it’s a neighbor or someone in your church, a friend or an acquaintance. And regardless of who it is, the enormity of the undertaking becomes readily apparent once you become the caregiver.

My best buddy from high school, who still lives in my hometown in Illinois, is stricken with ALS (better known as Lou Gherig’s disease). He’s 66 years’s old and spent most of his adult life as a marathoner, biker and all-around athlete. Today he spends his time in his favorite chair (but mostly in bed) watching the television and talking with the occasional visitor. My friend still gets up, uses his walker and has someone come from his store and take him on his or her delivery route. Then he spends a couple of hours at the store, just watching and waiting.

His life today is a consistent routine of sleeping, sitting, watching and waiting. He has a nurse that comes each morning to bath and shave him and help him get ready for his day. But his primary caregiver his is wife of 43 years. She is the person who is the major caregiver day-in and day-out. Was she prepared for it? No, she wasn’t, but she feels an obligation, born of love and commitment to her partner, that keeps her going week after week.

On a recent visit, we talked and here is what she had to say.

Question:  Well, I know this is tough, but how is it all going?

Answer:  I’m growing angry and frustrated. I’ve been doing this for nearly a year and a half now and it’s one of the most difficult things I’ve ever had to do. But I don’t feel that I have any choice. My husband needs me and we have limited resources in our town for this kind of service (caregiving). My kids give me a hand, but I’m still the one that is here every night and every morning, a never-ending process that can really sap your soul.

Question:  What kind of help can you get?

Answer:  Well there are a few caregivers here in town (maybe 2 or 3), but their time is limited. We have Hospice Care come in once a week, from the suburbs of Chicago (a 45 mile trip one way), we get lots of phone calls, our minister comes by and our friends are here to provide support. But, because of where we live, I’ve not been able to develop a steady care program, so the bulk of the work is mine.

Question: So, what’s a routine day for you?

Answer: We get up at about 8:00 a.m. We have breakfast within the first hour (yogurt and applesauce for him), and the hospice aid is usually here by 9 for his morning bath and shave. I find myself somewhat depressed, especially during the winter months, with the late morning sunrise and early sunset. But the routine is what makes everything such a grind. I’ve always enjoyed cooking for my family, now I’m just preparing soft meals so he can get some nourishment. I like when the nurse comes in the morning because she has a different view on things. And I like when the people from Hospice come too. They are very helpful for the whole situation. But the grinding, numbing sameness of every day is what gets to me. I have to rethink what normal is. I have to be here, which is OK, but it’s beginning to have a negative effect on both of us. We seem to be getting more and more irritated with each other.

Question: Sounds like you’re both getting burned-out. What do you think you can do to help you get through all this?

Answer:  Well, I do have my times when I go to the restaurant and meet with my group for coffee. That happens when my son can come over to care for his Dad, or someone else can sit with him. I can then get away for a couple of hours and my group is really helpful. We’ve sort of formed a support network with those coffee meetings and we can talk things over when we meet. My husband’s sister also comes up from Florida about every six weeks and that’s a real blessing. She stays at her own home here in town, but she’s here to help us and I so much look forward to seeing her, talking with her and having her here.

Question:  How do you feel now about the role of caregiver, having been through your experience?

Answer:  I just didn’t realize that it would be this hard. At first we had the shock of the diagnosis, then the months of acceptance, then the caregiving. It’s not easy to prepare for something like this. It changes your whole life and there isn’t much chance to escape, especially in our town, where we have limited services.

Question:  Do you think that your caregiving is working? I mean, even though you’re not a trained caregiver or nurse, are you making it work for you and your husband?

Answer:  It works. It’s the biggest challenge of my life, not one that I was ready to accept or was prepared for, but – yes, it’s working OK. And I think the most important part of this is attitude. I’m sure there are thousands of families that are in the same situation, and I’m sure they are coping. But I think attitude makes the difference between just coping and really finding a way to live on while providing the care that’s needed. You need to learn to take care of yourself at the same time you take care of your spouse and that’s hard as well. I’m into the routine that we’ve established day-to-day – getting up, the breakfast, the toileting and hygiene care, my daily trips to the store and our evenings getting ready for bed, but just getting through each day is the challenge.

Question:  As a non-professional, just how do you cope and live on during this trying time?

Answer:  I have faith, I have my church, my family and my friends to help me, but I think the most important aspect of this is that I’ve adopted an attitude that I can do this, make a positive difference for my husband and still stay positive about me and my life now – maybe even in the future. While I feel compelled to do this, I also feel that what I learn from this experience will help me cope with whatever else is ahead. I’ll be stronger because of this.

Question:  What do you miss the most?

Answer:  I miss that we’re not the family that we used to be. And I miss the freedom to be normal, to have a day where I’m not worried about some aspect of the caregiving that I might have missed or overlooked. I miss the simple, everyday things, like making breakfast or the family meal that I so much loved to do – with all the kids and grandkids here to enjoy.  I miss being able to do what I want to do each day. When he was going to work everyday, there was a certain freedom that doesn’t exist anymore. I miss that’s.

Question:  Are you planning any changes in the way that care is provided to your husband? I understand your personal commitment, but are you thinking about having others give you a hand with the care?

Answer: I’m thinking more and more about professional care services and how they might be able to help me. There are some folks here in town that could help and there are agencies, but they are not that close as I’d like – with the winter weather and all. And I’m not sure about the costs either. I’d have to consider all those things.

Question:  How do you think an outside caregiver could be helpful in you situation?

Answer:  It would be great to know that there would be someone here on a regular basis – say each Monday, Wednesday and Friday for 4 or 5 hours. Then I could plan some time outside the home, visits with friends and family, a more regular exercise routine, gardening and time with the grandkids. I think that would really be very helpful.

Well, the real meaning of home care is by most definitions being at home and being cared for – either by a member of the family or by a professional caregiver. To the question “can it work?” the answer is a resounding yes, but it can work a lot better for everyone if a professional caregiver becomes involved. It provides the primary caregiver with the relief he/she needs and gives the client (patient) the care they need when they need it.

Does it work? Yes, it works, but to what degree is the question. And every caregiver is faced with the same challenges. While it’s most certainly about the person receiving the care, it’s also about the caregiver – patient and caregiver, a unique team, under extraordinary circumstances and unusual stress and pressures. Can it work – yes, and even better if there’s a healthy mix of family and professional caregiving working together for the patient.

 Comments? Contact Richard Lind

Jess Cares ^SM Caregivers, Companions, 1720 Peachtree St., NW, Suite 1037, Atlanta, GA 30309 404-875-2044