Does this feel like nothing more than a death watch?

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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.


Dear Katiekate.

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.
Mom has heart failure

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.
I'm so sorry to hear your mom has heart failure. I know this is very tiring for her. And adjusting to the meds is hard as well. May I suggest talking to the doctor about adjusting the dosage to see if this will help her? Does she need oxygen? Its not easy being a caregiver and trying to maintain your patience and hope in the face of so many challenges. My dad never wanted to be a body, he also wanted to go back to his old life. But even though he never did, I still wanted to take care of the "body" as it were because I wanted to have my daddy in my life. I was not ready to let him go. But he still died on me. At this stage, if you find the care becoming overwhelming, I would try and seek out any community resources. I think respite care is so important. I would still seek out another medical opinion for your mom. Take care Katiekate.
katiekate, I know exactly what you mean. I felt like I was on death watch with my father. It was actually worse than that. It was like he was decomposing slowly in his chair. My mother is not quite so bad. She is up and down. There are times when she starts to just sit for hours on end, but she'll start doing things if I get onto her. I do not want her to think it is okay to do what my father did. Still I feel I'm watching her life ticking by while I watch my own ticking by. It would be more bearable if there was some community or family around, but dying is a lonely venture. Everybody who can runs away.
Katie, I assume she doesn't have a pacemaker to regulate her heart rate? Before I read that post I was wondering if she was chronically anemic, but I can see now that the accelerated heart rate could cause the extreme fatigue.

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 too wondered about a pacemaker, I know my uncle has one for his A-fib.
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.
That was my thought too - does Mom have a pacemaker...and if not, why not? Is there a reason for it? It's no wonder she's exhausted if her heart is beating erratically. My own mother started fluctuating between 70 and 150 bpm and required a pacemaker. It helped, for the time that she had left.
Heart failure is a terrible disease to watch progress. Having just watched my loved one suffer terribly for the last 2 years, I honestly feel like I would rather slip off gently at the earliest possible than to struggle with high oxygen rates, the rattles in my chest, the fear -- it was so awful at the end. In hindsight, his pacemaker was the wrong move. I hope you don't go that route. How about contacting hospice and see if your loved one is eligible, as they give support to the family as well. Hospice was able to bring our family together to face what we did not want to admit was happening.
My dad had heart failure for the last 3 years, along with diabetes, COPD and prostate cancer. At one point we though he was on the verge of death, but the Doctors worked with him to bring him back from the brink and he had 3 years more years of life, at times really good, at other times not so good, but all worth living. So don't give up just yet. Even here near the end of his life, after we put him on hospice, he had a rally that lasted until he fell and broke his hip and died three days later. He was happy and had a great pre-thanksgiving feast with family at the new Assisted Living we'd move him into just 6 weeks previously. We could never have done it without the help of Hospice. In the middle of the night after the feast he fell and broke his hip when no one was around. He was able to immediately call for help and the hospice was contacted. He was taken to the hospital, operated on, home the day after and so glad to be out of the hospital. Sadly he passed the evening he arrived back to his little apartment. But he went fast, and relatively peacefully. He was ready, and mom came and got him of that we have no doubt. So it ended....but not sadly. It was much better then simply "death" watch, thanks to hospice and the right meds and lots of love. He was 87, had a lot against him, and yet was kept out of most pain and mostly content in the last month of life. We couldn't have asked for more. Hope your situation turns out the same...
A pace marker creates an electronic pulse when too much time has elapsed since the last one. It does not surpress all the additional heart beats

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.

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