More Family Trauma

So, in addition to our Cancer Journey with Dave we have had additional family trauma over the last few months. I am waiting patiently for the good things to start happening to our family as we are getting worn down by all of the negative. It’s been hard to cope with all of the sadness and frustration that has been experienced since Christmas, and some before. In early 2021 Dave’s grandmother passed away. It was somewhat sudden, and hard. She had been in care for a number of years with Alzheimer’s and we hadn’t visited for a long time. The last visit was just after Seth was born. The visit was a bit hard as she kept thinking that Dave was her husband and getting confused. Dave and Grandpa Adams could be doppelgangers for each other. Both had Alopecia and similar builds. There is a picture that exists of each of them in their early 20s and it is hard to tell them apart. Which would explain the confusion that Grandma had when we visited. She always had a hard time placing me in the mix, but knew the children were mine. We were told that she was ill and Dave had wanted to go see her, but she passed quickly which made him very sad. After this Dave’s own health and fight took a downward turn leading to being admitted to Palliative Care and then hospice care. This was all very discouraging as it means the cancer has continued to progress and is taking over. Dave has since lost the ability to move and now speak. He tries to speak, but has extreme challenges getting words and sounds to come out as his tongue doesn’t want to cooperate. For more about this see our posts in Dave’s Journey. Just after the move to Hospice care, my Grandmother (my mothers’ side) fell in assisted living and broke her hip. It was later found that she was severely dehydrated and suffering from a severe UTI. She is 93 years old. There has been a lot of stress and fight around getting her in care for multiple reasons. I am going to stress again that you talk to your loved ones about what you would like when you are older, if you are injured, or if you need life saving or life extending care. Yes, there is a difference between saving and extending. Have these conversations, put them on paper. In the end it makes handling traumatic events so much easier. I know we don’t ever want to think about these types of things, but when they land in our laps having a plan or something you can reference makes it much easier on everyone. The disaster around my grandmother’s care continues with multiple trips to Grande Prairie from either Grimshaw or Fairview (1.5-2hrs away) via medical transport, only to be returned to the starting point due to no beds. She still has a broken hip which requires surgery to repair. It’s been two weeks. My mother has been dealing with all of this and the care contact for both my Grandmother and Aunt who is in the same facility. The communication around what is happening has been horrendous. The health professionals have not been using alternative contact numbers to contact my mother about changes in care when they occur or changes in the plan of transport, surgery, etc. They will only call the primary number and leave a message. My mother doesn’t live in the town where care is being provided, so has not been receiving the messages in a timely manner. It is beyond frustrating for her as she is at minimum 3 hours away should she need to be somewhere quickly. Getting a call from the Hospital staff in Grande Prairie asking where she is when she is expecting that her mother is having surgery and will be headed into recovery is very frustrating as she was headed home as she was trusting that her mother was to be admitted to hospital and cared for after surgery. The lack of communication around my grandmother’s care has been beyond frustrating. My mother is her Power of Attorney and has her primary directive for care and yet, the care providers can’t seem to take the time to properly contact the person who needs to make decisions on care. Yes, my grandmother is 93 and has some form of dementia, but she is still strong and stubborn and wants to live. She should not be written off because she has fallen, broken her hip and had additional medical concerns. No one should. Honest communication is key to ensuring that proper decisions are made by decision makers on care for our loved ones. Without knowing how they are actually doing, if they are eating etc., it is very hard to make decisions around end of life. There are times where you feel like you aren’t getting the right information because you can’t see the person to make a decision based on your own observations. When you ask questions, you get different answers that feel in conflict. It has been exceptionally frustrating for my mother as she is also needing to communicate all of these goings on to her brothers and other family members. Making multiple phone calls multiple times as things keep changing. It’s emotionally draining on top of being immensely frustrating having to deal with all of the changes, decisions, opinions, calls and the waiting. I know as we are living with this with Dave. It takes a strong person to not lose it with medical professionals in situations like this. To stay calm when making decisions, but we all need outlets to let the frustration out. I am very glad that I can be that for my mother. I have had some of this experience, thank goodness not to this extent. I have been fortunate to receive great communication with our teams but can completely see how this can be broken down when you are dealing with multiple hospitals and care facilities. The belief that an adult can make poor decisions regarding medical care is how our medical profession operates. I get it, as I wouldn’t want that decision to be taken from me either, BUT if I have designated someone to make decisions for me as I am not able to communicate them properly I would EXPECT that those working with me would make every effort to reach me, not just leave a message on the first number they have. I am going to recommend that my mother change the primary contact number to her cell phone, but she has to do that for each facility and care contact. Unfortunately, none of these systems seem to talk to each other or pull from the same database (which they should based on the AHS central database – or at least my understanding of it). I have had some experience with wrong numbers until I made it clear that Dave doesn’t check his phone and changed them all in the systems, it was every system. While it often feels like you can provide better care for your loved ones at home, sometimes this isn’t possible, and we have to rely on professionals to provide care in our place. We have to trust that the care is good (enough) and that our loved ones are happy and healthy. In instances such as this it is hard to have that trust. It makes you unsure of your decisions and leaves you feeling anxious, nervous and guilty about your decisions to place a loved on in care. The feelings become increasingly heavy when bad things happen while you are not there and trusting that your loved one is getting what has been described. It’s a hard place to be no matter when this occurs in your life. Have the conversations so that you can feel at least a bit more comfortable when making decisions, even if the circumstances around them are not ideal.