Our Valentines Day was nice. Mike felt okay for a few moments, but not for long throughout the day. The girls and I went to a florist and picked out a couple of flowers to make a bouquet and I had Mike give the kids these gifts that we had made back in September. He has lost his ability to read and write, so these gifts of handwritten engraved necklaces, a keychain and wooden “I love you” boxes are very special. Kayla actually had to wait until this morning for Mike to sit with her for her to open her gifts because he wasn’t feeling well last night and she wasn’t here when the other kids opened theirs.
I don’t remember where I bought the boxes from, but the necklaces came from the following link: https://www.etsy.com/listing/156050883/custom-handwriting-necklace-with-the?ref=shop_home_feat_1
This is the flower the girls picked out for me…
And I picked out my favorite flower….
We ended up with a nice little bouquet.
Most days Mike really has to muster up the strength to have even just a few good moments. He often sits with his head in his hands in between those good moments.
Kenzie wanted Red Robin for lunch, but we haven’t been able to go to a restaurant since August. Mike doesn’t leave the house at all anymore. About a month ago he left the house to go for a ride to the Krispy Kreme drive thru, and that is when we realized its just too hard and the enjoyment isn’t there. Red Robin is just a half a mile from our house, so I ordered to go and brought it to them. Mike wasn’t feeling well enough to sit at the table, so we all joined him in the room. Most of the time he is in our bedroom still, but there are times that the adjustable hospital bed is needed to help him sit up.
As far as whats going on with Mike these days…well, he has some really great moments still, and I’m so thankful for that. That is what I dwell on day to day – the good moments. But in all reality, he has some really bad moments too. I’d say the pain is pretty well managed, so that is an improvement. Its just the random brain shutdowns that are difficult. (for lack of a better way to explain it) He can be doing so well one moment, and then have problems the next. For instance, last night all of a sudden he said “I can’t see.” When those things happen, (its not the first time his sight has gone) I go into comfort mode. I do whatever I can to help him have peace. These moments are scary for him I’m sure. I tend to try to get him to the bed and try to get him to sleep when the scary things are happening and I hope that he can wake up feeling better. We also wanders like an Alzheimer’s patient. Other things that go during that brain shut down mode are speech, and sometimes the ability to stand or sit up. Sometimes he experiences just one of these things, sometimes all of them together, along with the Alzheimers/dementia type of behavior. The hardest moments are when he’s having the dementia behavior along with the physical inability to physically be steady. There have been times that he refuses to stay in the bed, yet he isn’t safe trying to get up. This doesn’t stop him from trying though, and he has had falls. Its really hard to describe, but my hope is that by trying to share our experiences I’m giving someone some insight and that it will help someone else in their care giving journey. Sometimes the fact that we know that it is “normal” within the realm of GBM patients helps us as caregivers to get through the hardest moments and helps us know how to better help our loved ones. I don’t have an answer on how to get him to stay in bed, but the biggest relief is when I can make sure he isn’t anxious, scared or extremely agitated. There are medications to calm our loved ones so if you are experiencing this, just share the details with your doctor of what is happening, and they should be able to prescribe something to comfort the patient.