Another month done.
Another month where Mathew grows weaker.
He is eating less and went five days without eating during one part of this month. He does still usually eat one small meal a day. We get excited if he snacks on something later. Tonight he took a cookie and ate it!! Just to eat it!
Mathew usually wants to eat chicken with a small side of something. His go to drink is Nestea and he’s having a good time if he drinks a can of that. Otherwise it is water.
I sense that we have moved into a new phase of Mathew’s life and one that is perhaps a precursor to him dying. He is growing tired and even exhausted. He is becoming too tired to sleep but at the same time, too tired to do anything. If he is feeling well enough he sits in his chair for an hour, maybe two, to play a video game or to watch a tv show or part of a movie.
There is no desire to go out anymore, although we have gotten him out about once every 2-3 weeks, for 2 hours or so. Mostly he is in bed either resting or on his iPad.
There are many difficult moments and conversations as well. This is the part of dying that you hear about but don’t realize its intensity or duration, until in the thick of it. Mathew does not want to die. He senses it is approaching and it is producing regret, anger, bargaining and despair. Sometimes in one emotional wrecking ball. These happen daily and you might as well pierce our hearts with a knife; it feels the same. We are now acutely aware we will be losing our son… and the emptiness beyond that moment is weighing heavily on every fibre of being.
Trying to get Mathew through the difficult moments is wrenching and drains my energy. Often he requests, or we offer, an Ativan, which helps him to settle. I don’t recover so fast and know these are scars I will always carry.
I try to sleep when Mathew sleeps and hang out with him when he is awake. I run out only for necessary errands and seldom, for a luncheon. I feel the passing of time too acutely to want to be anywhere but near Mathew.
Mathew is feeling some discomfort in the last day or two; the same pains across his chest and on both arms. This would be the tumours in his lungs stirring up trouble. The extra mural nurse still listens to Mathew’s chest every visit and they still sound like air is passing through normally. His nurse is also doing the port flushes at home so Mathew doesn’t have to leave the house for them anymore.
The biggest change that I’m seeing is that Mathew is too tired for company. Whereas before he welcomed visitors and loved to chat, nowadays he just shakes his head and mumbles his regrets. For those that have seen him, the visits are much shorter before Mathew tires out.
At this point in his journey, Mathew is acutely aware that those who visit him have a future and he doesn’t. He finds it hardest to be around his peers, when they speak of upcoming events and other activities they are partaking in. It is too emotional for him to hear all these plans that will happen without him here to see them or to have his own. Since most of his cousins and friends haven’t dealt with such a situation they are not aware of the impact of their conversation that occur around him, if two or more visit at once.
Mathew’s comfort and well being are our priority for the time he has remaining with us. Time is precious and I worry is running out. With these thoughts and also with the fragile state of Mathew’s emotional well being, John and I have a few requests.
1. Please text/call before coming over. If Mathew isn’t up for company, neither are we. It takes us away from him and from resting. We prefer to visit with you away from our home. Mathew gets very upset if he hears people talking and laughing when he isn’t well enough to visit ~ and he becomes very agitated if John and I leave him alone.
2. We are not keeping Mathew from you. Those who know Mathew, know he speaks his mind and his wishes guide our decisions. He is dying and is tiring out. It is unbearable to watch and we would in NO WAY keep anyone from him if his wish is for someone to visit. We had out of town visitors who sat with Mathew for a little bit as Mathew said it was probably the last time he would ever see them.
3. When he does have visitors, please know your visit may be shorter than you had hoped. Mathew lets his Dad and I know when he is too tired to continue the visit and that is when we kindly end the visit. Please do not think you have done anything; you haven’t. Mathew tires easily – he is dying. You and I cannot understand the level of exhaustion that his body feels.
4. Please remember that Mathew is keenly aware that his future is short. He loves to talk about movies, tv shows, music, etc. While he is happy about the events YOU are excited about it reminds him, again, that he doesn’t have that luxury and it makes him cry.
5. I need you to know that my emotional state is now fragile. I am going to lose one of my children; a parent’s worst nightmare. I am not always able to carry on a normal conversation about every day subjects, nor do I want to. I am fine with text conversations because I can keep my emotions mostly out of it.
6. If you don’t know how to approach us, just try, “How are things?” That gives us room to answer and disclose information as to our current comfort level. I might be able to go into detail in one minute but the next only be able to smile and shrug.
7. We know how much you care and how much you wish you could change things. We feel the same way. We have a wonderful support system that we do feel welcome to call on should we need help of any kind.
We do remind Mathew of the people who love him and who are ready to run over to visit should he be in good enough health. Trust me when I say that we know how very much you want to see him. For those whom he will not see again, please treasure the good times and good memories. He doesn’t want you to see him like this.
For any not yet aware, at this time the plan is for a small, private wake after Mathew passes away. He will be cremated and shortly thereafter a family get together to remember, laugh and cry. This has been discussed among the four of us and Mathew has given his consent.
Let’s hope we don’t get to that for a long time yet.
I will make a better effort to post frequent updates here, so that you may see how his day is going/went. When I am with Mathew my phone is on silent because even that noise bothers him.
Life is precious. Be well.