The path to caregiver can be long and slow as one watches a friend or loved one slowly show signs of decline. It can also be quick and unexpected, brought on by sudden illness or accident. Slow or quick, this is the most difficult and often turbulent time for everyone involved. The first hurdle is recognizing and/or admitting that your loved one needs help. At the same time it is most difficult for the patient to admit the need for help.
There can be a tremendous amount of denial as we begin to see the signs. At first this is usually facilitated by the loved one's struggle to hide changes in ability. Vanity, pride, and stubbornness are very strong motivators and during this period they may intensify. The patient can be very clever at hiding difficulties. Often the future caregiver is only too eager to believe that everything is fine.
"The first step toward change is awareness. The second step is acceptance."
nathaniel branden
I went through this struggle for the first time with my own mother. I was young. My mother was good at hiding what was happening to her until the decline was too great to hide. Some bills went unpaid while others were paid more than once. She stacked piles of mail with the intention of "looking at it later". She began neglecting her personal hygiene. These things were completely out of character for the proud, strong and proper woman she had always been.
It took a couple of serious falls and injuries for me to realize that something had to be done. I assumed the household and financial responsibilities. With the help of my sister, we tended to my mother's personal chores. None of this was easy. There were so many emotional issues involved. I was embarrassed. I was sad. I was nearly overwhelmed. I learned and grew. I found a home health aide to come in a few days a week and this made all the difference.
It is around this topic that I have gotten the most questions from friends and acquaintances. One of the most common themes is that a loved one is failing but refusing help. For a short time while she was in this transition period one of my friends would call me, exasperated that her mother was refusing help. The mother was living on her own and belligerently independent. Medicine wasn't being taken appropriately. She fell out of bed. Meals were being missed. My friend was worried and frightened but struggling with crossing the threshold from daughter to caregiver. My advice was that we need to decide when to override a loved one's desire for independence for the sake of safety.
I remember saying: "you wouldn't leave your kids at home without a babysitter just because they didn't want one".
There is a fine line between independence and neglect. We all walk that line and learn as we go. Some of us make better decisions than others. That friend of mine made all the right decisions. She took charge. She faced reality. She hired help. I have see others who have fallen on the other side.
There was another elderly gentleman that I knew. He also lived on his own. He was also failing. He had grown children who lived locally to him but just didn't take on the responsibilities. This guy was so obviously neglecting himself. He had become filthy. He was losing weight. He was falling frequently. He was still driving his car well beyond the point of safety.
I took it upon myself to make sure his children were aware of the situation. I made sure he had meals a few times a week. There wasn't much I could do beyond that. This situation went on for several years. The children were either in denial or overwhelmed. Ultimately there was an incident involving his car and they woke up to the reality.
It took a long time but they finally made the right decisions for their father's well-being.
"It's not the load that breaks you down - it's the way you carry it."
lou holtz
As I read today's blog a few things came to mind. I've worked as a home health aide for about 10 years now. One of things that I have tried to suggest when first "trying" to introduce an aide into the home is to bring them in gradually. As the blog suggested it is a difficult time when the "loved one" who needs the help refuses or more importantly doesn't want to admit that they are in need of the help. By gradually introducing someone into the home, you are slowly sneaking them in to the daily routine and giving the "loved one" the opportunity to become friendly with the person first. For instance, bring the aide into the home for a brief period of time to perhaps just to do one load of laundry. The next time, have the aide bring the "loved one" to a doctors appointment and hopefully it's a bright sunny day and they can stop for an ice cream cone on the way home. They need to develop a trusting friendship and that sometimes doesn't come when and aide is thrown into the mix and forced upon the "loved one" who is feeling like they are losing control of their own surroundings. I assure you it will become a lasting friendship and not just a caregiver/loved one relationship. The second point I wanted to touch on was the financial part of it. It can become very expensive depending on how many necessary hours a day might be needed to allow the "loved one" to stay in their own home/environment. The raw fact is sometimes family members just DON'T have the funds! It can become a sacrifice for all involved but in the long run, everyone will recognize how much healthier it is and the dignity that remains with the "loved one" will be something that will enhance their quality of live in an environment that they know as Home!
Cheryl thank you so much for your input. Your suggestions are spot-on. I am all to familiar with the financial question you raised. There is so little support for at-home care. It has been very expensive for me through the years.
This post hit very close to home. We are currently dealing with this issue with my mom. She has been back and forth between hospital and rehab (for PT) since Feb 13. Before this latest incident she agreed that she would be better off in assisted living, but we fear that at this point she needs more. She wants to go home after rehab but cannot be left alone. The thought of finding help for her in her home is daunting; how does one begin to find someone? My siblings and I are struggling with all the emotional and logistic aspects. Thanks for the post; it is comforting to know that others have dealt with a similar situation and made it work. I don't know if Mom will end up in a nursing facility or not, but we try to remember that keeping her safe is what is important. It is strange (and sad) to think that I've gone I'm acting as her parent now.
Dear Anonymous: If I can be of any help or if you'd just like some advice please feel free to contact me directly. You can email me from my profile page. I have a lot of resources and contacts.