Where to turn? Who will help? Know the options.
As we look around, we can see many people in the same conundrum.
The holidays are here and everyone is decorating, planning, partying, and buying gifts and so forth. How can you get through this period of time with someone who is terminally ill, maybe not even expected to live through the upcoming holiday season? And everyone keeps saying what can I do to help you, what to say?
The first thing for you to remember, it is all right for you to be sad, give yourself permission. Don’t try to do everything by yourself, allow others to help. Have a note pad or voice activated tablet with you all the time. As you are faced with each day, look and see what someone else can do, write it down. There are so many things, tasks, and chores it will be fine to have someone help with. Anyone who has an inside cat, one chore on this list changing the litter in the litter box. Someone you have confidence in can go to the pharmacy or order you medicine by your computer for you. These are only two examples of help you can have friends and family help.
Another way for you to have help is make your list and post that list so that people can just signup for and go take care of the task. Be sure they do signup so that two a looking at the list do not duplicate. Keep one or two close friends or relatives that you can call even in the middle of the night in case of an urgent or emergence.
You need to take care of yourself. Be sure to eat regularly and good food. Fast food or vending machine will not meet your needs for several days in a row. But what you can do to meet this need? Especially in hospitals or in care facilities are frequently able to prepare food for you as long as they know your particular dietary needs. With your personal needs and dietary needs met, how can you feel as though you are doing as well as you can? At this point if you are a reader – ask for visitors if they would bring you a book or ask if they would sit with your loved one while you go to the hospital store or the waiting area to get some magazines. I would be surprised if the staff would not ask to help. This brings us to another item you may want to have handy. A guest register book, your thoughts are so scattered at this point, and this one site will have the list of visitors. This is good to go over with the person that is ill or for Thank You cards.
All of this may seem to like child’s play to you, but remember this frees up your mind to handle other possibly more important tasks. Remember the most important function for you right at this time is to stay well, both physically and mentally. If you do not believe this or perhaps this seems possibly to simplistic. I have worked with this population for many years (greater than twenty) and what I came away with was many of the tools listed above and how sad it is when the ‘well’ caregiver passes first due to the overwhelming strain they are under.
If possible and you are so inclined, write down all of the feelings and actions for first line relatives. Or if you wish to write begin a memoir for this person to be past down through the family. Please remember to be mindful of privacy and advocating for not only the person who is ill but also for the first line relatives. After checking with the husband or wife and asking if it would help to pickup mail and newspapers, living close you may think this is nothing to be concerned with. In truth, it is very important for any numbers of reasons. Perhaps the first would be to keep unsavory people away, I remember a smaller town approximately 4500 people and every time a family was having a memorial, the house would be broken into. What a thing to have happen, right? Turned out those breaking in were simply reading the obituaries or watching to see the comings and goings. The small things do count, perhaps more than we know.
Now the holidays are a different matter. First who wants to be participating in a large gift exchange? They are doing good to get through each day and sometimes even the next hour, so instead bring them a remembrance of happier times. I know one of the most cherished gifts I received at the time was a framed picture of my husband on his tractor smiling and in the sunshine. One reason this was especially dear to me was he so loved that tractor (the joke being he would sleep with it if he could) and the sunshine was so good because he just couldn’t seem to get warm. I have that picture setting on my desk and will keep it there. There are times and jokes there seem to lighten the somber mood in a situation like this.
Money and time are tight without having to worry about gifts and cooking meals. Most recently, I was privileged to be there when a friend (a retired school teacher) was at the end of life and the entire Key Club (an organization of high school students with a focus business) brought food for the family for days through this time.
Helping does not mean spending money, helping means caring. And when visiting with the person if they are awake and sometimes when they are not let them share any information with the visitors. We do not know how much it may mean to them to share. Our parents are our parents from the time we are born until the end. Even when there has been a trouble rift within the family prior to this recent illness, fences could be mended.