Does this feel like nothing more than a death watch?
I realize that my title is harsh. I wanted to be pointed in speaking my feelings. If I sugar coat it, then the point is lost.
Mom goes thru frequent episodes of extreme exhaustion. This causes her to miss most every therapy session. She cannot even find the energy to hold up her head...forget work with speech or occupational therapy.
So, she is actually losing ground. Her speech is less coherent, her ability to sort out what is happening is getting worse
I am feeling more and more like this is just taking care of her body ... waiting for the end. I have held out the hope of a recovery back to some level of competence....I don't any more.
Does it always come to feel this way to caregivers? With the loved one "gone" ... just the care of the body remains. I cannot help but to wonder if this is the way this will be...for years.
How are others dealing with this? It doesn't feel right to me, yet it feels like the truth.
Mom had told me that she wants to drive off with me in an RV and see as much of the country as there is time left. I know that dream will not come true now. It's been 9 weeks of episodes of "crashes". There is nothing the doctors can do. I accept that now.
I'm so sorry. I know its very hard to watch your mother go through this difficult time. I think watching our parent's lose their independence is one of the hardest things in the world. You mention her exhaustion and I wonder if this might be related to her medication? In my father's case, once he was over medicated after his stroke leading him to throw up and lose his appetite. Once we lowered and changed the meds he seemed to be doing better. But then we went through another cycle where he was also very tired and seemed to lose the will to live. This was due to the fact he had heart failure! and I had no clue till he was hospitalized for his labored breathing. I know everything is 20/20 in hindsight. I know its hard to stand up to doctors and nurses, but I wonder if they can dig a little deeper as to why your mom is so exhausted. What does your mom think? Towards the end, my dad told me he wanted to die. He was so stubborn, he wouldn't even tell me he was having pain. People tell me, he wanted to transition, but I didn't want him to die. I know there are no easy answers. And I agree it is hard see a parent's quality of life deteriorate. And there are times as a caregiver, you want to throw in the towel. And even if it seems like they are going downhill, I honestly think, there has to be a reason. In my dad's case he was dying of heart failure. They told us he had 6 months and he died two days later. I would go with your gut and seek another opinion for your mother.
The cause of her episodes is sudden onset of extreme accelerating heart rate. It leaves the patient in a state of extreme exhaustion...often for 24-36 hours after the event is over.
She is already taking the mediation to regulate her heart rate. And it works most of the time. Any decrease and the frequency of "crashes" increases. But..they cannot increase her medication level because it would suppress her heart rate below a safe level for the majority of time. Medication is the only tool to deal with this...and it is ineffective for a wildly changing heart rate. Works most of the time...but, most of the time is not enough.
What you could do is see another cardiologist for a review of her condition and meds to see if a different cardio might have a different approach.
We got rid of my mother's first cardiologist after my sister and I became involved and discovered he wasn't open to anything except his own rigid ideas. We were fortunate to then find a really great cardiologist.
I think we all tend to see someone who is 90 as having limited time left - months vs years - and perhaps not seek treatment the way we might for someone younger (docs too). I have learned though leaving things under treated or not searching for answers can greatly reduce their QOL if they keep living for years and years.
Her resting rate is about 80 ...normal. Up to 90 when walking. But, recorded at over 170 during an episode. This is a short span of less than a minute...then back at to normal. But, of course...the knock-on effects linger for days.
If you figure the number of minutes in a whole week....the episodes are very rare...only 1 minute out of a whole week. But...the cost is so huge. It is costing her quality of life.
No..pace maker works for someone experiencing LACK of a heart beat....not mom's problem at all.
Has a cardiologist told you that a pacer wouldn't help?
Regarding the exhaustion, for me I had way too low B-12 level. I started B-12 shots once a week for a month, then went on B-12 pills. They really helped :)
What a pacemaker will *not* do is keep a dead heart beating. If the heart stops, it stops - the pacemaker will not re-start it. A defibrillator does that. Mom's heart simply stopped one day and she collapsed - the pacemaker was unable to do anything about that.
After Dad died, I asked that the pacemaker be removed before cremation and was able to find an organization online who could use it to try to help those in underdeveloped countries (it's illegal to reuse them in the US) who can't afford a pacemaker. After all, it was built to last 10yrs, and dad only used it 3 months. He would have loved knowing that it was donated for a good purpose.
I was informed that all medical devices are removed prior to cremation, because the pacemakers can explode when exposed to the high heat of the cremation chamber. I have no idea what happened in Dad's case, but while sifting through his ashes to find the ID tag and remove it (so we could scatter them without them being traced back to us, though I didn't much care if we got fined for it)....I found a couple of springs and pieces of metal too small to be anything but part of the pacemaker. I didn't find anything like that in Mom's, so I can only assume that was what was left of his pacemaker and that it wasn't removed.