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Post Surgery Recovery for Older Frail Women

kk_stl
0 Recommendations

Hi heart sisters,
I sent an earlier post about my mom surviving her isolated aortic valve replacement surgery last Wednesday.

I had spent much time and effort in an attempt to achieve information so that she could make an informed decision about whether to have the surgery, what to expect, how soon, etc.

So that nobody makes the same mistake as I did, the type of incision really is not a major criteria in navigating through this maze. Perhaps with the full sternum not being cut and spread, she will be able to use her upper body strength sooner to help in the rehab.

I have to admit right now I'm in shock at how much worse my mom's condition has become. She can barely walk. She can't get herself in or out of bed so she won't even be able to go to the bathroom when that time comes.

I guess one could say that she is alive and that should be celebrated but she was asymptomatic before the surgery and now she can barely catch her breath after walking several steps. It is so painful to watch.

At her age, she might not even survive the stress of this and she could develop other fatal conditions like afib and die quickly from that and discount the extra 10 years of life the new valve will give her. They knew about the thickness of her heart wall before the surgery but nobody told us about what else could go wrong with her after surgery or down the line due to the condition her heart was in.

She has a wonderfully working valve but who cares if she is not the person she was and will never be?

They say she will probably get better therapy care from an in house rehab center than using home health care. The case worker told us our Medicare insurance coverage plan doesn't like to reimburse for home health care.

My mom wants us there with her in ICU around the clock. She is afraid that we will leave and the nurses won't take proper care of her. She's had bad hospital experiences in the past. They can't focus on her emotional comfort as much as making sure she doesn't code out. But I'm fearful the stress will push her over the edge. Seeing her so agitated and full of anxiety is enough to push me over the edge with a breakdown.

The next step out of ICU will be a step down unit where the patient/nurse ratio will be much higher. I don't know how we are going to get through this.

Does anyone know of some good criteria to use when evaluating an inpatient cardio rehab center? I feel so unprepared and I know that she will be scared that she won't get better in one of these and will be sent to a nursing home where she will die.

I can barely keep it together right now. I don't like surprises. At least, when I toured the ICU beforehand they warned me that some patients will try to pull out their breathing tube. What they didn't explain is that some people can't swallow with it in and appear to be choking. They can't take the tube out until their breathing gets to a certain state. I could handle them using wrist restraints but I could not handle the tears in her eyes and her begging for it to be removed. I warned her about this and pleaded with her to try to relax during this period but it didn't help.

I feel so alone and lost right now. I'm trying to take care of myself but it is a learning experience on what is adrenaline energy vs. rested energy.

Please pray for us. I will be journaling every detail of what has happened to her so that other families can get a forthright picture of what is more likely to happen after surgery in an older person. Nobody is alike and some people will recover more quickly than others but families as well as the patient need to be prepared for the worst.

During this process, I missed an important date to reinstate my mortgage loan and lost my house. The third party buyer will let me buy it back at a 25K profit. I don't have redemption rights. I will be depleting most of my 401K to do this. I don't even have time to see if I would qualify for a loan having been foreclosed.

I won't say things couldn't get worse because I know they can.

Weary and feeling overwhelmed,
KK

Explore topics in this discussion:

Exercise Cancer Heart failure Surgery Anxiety Angina Clonazepam Stress Dizziness Heart disease Stroke Diabetes Pain Heart attack Memory Pacemaker Congestive heart failure Aortic aneurysm Lorazepam

16 replies

Katz

I don't have any practical advice to offer, only encouragement and support. Things look very bleak right now, however, your mother may become stronger than you think. You just never know . . . Try to hang in there. I'll continue to think about you and pray for you both. It's really hard to watch your Mother go through this.

Scottie

grace5

I'm so sorry you're having such a hard time, life has a horrible habit of throwing so much at as, one thing at a time would be easier to deal with. I can't help much except to share my experience with you. My mum had an aortic aneurysm repaired in an emergency situation when she was 75, it happened just four weeks after my husband had an MI.
I remember how awful it was for all of us, she did not recover well and was very unhappy in hospital, I too sat with her most of the day. She spent 3 weeks in hospital and then they wanted her out, she could barely stand, couldn't dress herself or use the bathroom and boy was she miserable. We were in a dreadful predicament, the apartment she was living in was being refurbished at the same time, the windows and the bathroom were being ripped out and it was October, cold and wet. My tiny cottage has very steep stairs, there was no way she could have managed so we hunted for somewhere where she could recuperate and we were lucky enough to be able to get her into a home for 6 weeks, they had a gym and a physio and plenty of experience with elderly people, that was her turning point, she slowly recovered and by the time she came home she was much stronger and happier, she still needed a lot of help but the worst was over.
My mum turned into a needy child, that sounds awful I know but it was a total role reversal, she handed everything over to me, her health her home and all her decisions, it was hard not to be resentful sometimes, especially since I had to deal with a husband newly diagnosed with diabetes and cope with his MI recovery and dreadful moodswings as well as oversee the work in mum's home. It was a tough time so I understand the turmoil that you're in and I wish you both well.

Hugs,
Lidia xx

kk_stl

Thank you for the words of encouragement. I feel like I'm in a dark tunnel and can't see the light. I regret now that we pursued the surgery but there's no turning back at this point.

Last night they did an intervention and brought in 3 doctors on duty. Earlier that day they took her completely off her pacemaker to see how she would do. She was fine during the afternoon up until about 9pm when her BP dropped so low and things took a sudden downturn. I wouldn't wish this experience on my worst enemy. Nobody explained things properly to us. My mom is not happy either and this morning was begging me to remove the bipap mask. She was getting mad at me and I finally couldn't take it anymore. I had to leave the room and her alone.

I don't think I can do this without better medicine than my lorazepam.

Joy3032

My mom's recovery was long and rocky and it was a hip she had broken. She was very childlike and whiny and it took two of us to get her to the bathroom. I hired a nurse aid from a temp service and she came in and helped bathe and dress her and came back to get her in bed at night. She insisted on lying on my family room couch so she could be in the midst of things and we tip toed around so she could get some sleep. It was a rough time, but she finally recovered although she could never walk unassisted and we finally decided that she had to be in a wheel chair or we would go crazy lifting her and supporting her. She finally had to go into a nursing home. She was unhappy for a couple of weeks and kept say "Are you going to leave me here?", but she finally got into the social scene there and played cards and enjoyed others comany. She also loved the hair dresser there and the jacuzzi baths. Life gets tougher as we all get older a now that I look ahead to my 80's after quad by pass and several heart attacks and stenting and the ICD, I can be much more sympathetic to my mom who died at 85 very peacefully. Good luck... Joy

MMaslek

I feel awful that you and your family are going through this. We always expect our parents to be the strong ones so it's awful when the tables are turned. At 78, I think I would have made the exact same decision that you did and gone for the surgery. In today's day & age, 78 just isn't "that" old anymore.

I think I would listen to Joy and Lidia & look for a temporary rehab residence to help your mom recover. She may get mad at you but they are better equiped to handle what she will need to do without feeling guilty or like they are letting her down. That will be the hardest part, I think. Feeling guilty that your putting her through this. But your not!!!! Unless mom's mind is gone, she was an active participant in making these decisions so cut yourself some slack.

It's so hard to see those we love suffer. I wish we could wave a magic wand and make it better for you. We can offer you a shoulder for whatever decisions you make. See you doctor... he may be able to give you something to help you deal with everything going on. Hang in there!!!

Amy

kk_stl

Joy,
I had always heard hip surgery was a tough one to bounce back from. Not sure why that is so compared to others.

I reread my post and should clarify that nobody properly explained what could happen before surgery...the nurses here in the ICU are nothing short of heroes. They answer any questions you have and are extremely knowledgeable. If it weren't for this type of care I would be in the hospital myself! lol

I finally got a few hours rest this morning. It has improved my emotional well being tremendously.

Joy3032

I laugh when I hear 78 is "old". I will be 77 in August and feel, despite all my heart ailments, like a young woman. I still remember vividly when my mother was 78 and she had to be lifted in and out of the car when we took her out and she was in a wheelchair and looked "old". My generation, most of them, are still golfing and walking and playing tennis. Maybe that is why we are still here. Glad your spirits are a little lifted. It is hard to care for a family member and be objective. I am a retired nurse and I know why most doctors won't treat their own.

Cheers...JOY

Kennarina

Hurray for Joy! You are a great role model for the rest of us who are not far behind you.

KK, there really is never a 'good time' to be caring for a frail elderly parent post-op, but this seems to be the worst possible timing ever! I'm so sorry that you are going through this, and that there is so much stress in the non-mother areas of life, too!

What absolutely will NOT help you now however, is second guessing this decision to have the surgery. What's done is done - the decision made was the very best decision you could have made at that time. Your mother was diagnosed with heart disease, and a valve replacement is a highly recommended procedure, especially for aortic valves which apparently suffer most from the general wear and tear of aging. Even if she was asymptomatic before now, she most definitely would have been exhibiting extremely distressing and possibly fatal symptoms very soon. You are correct to be looking forward now to investigate future rehab plans for her.

I do want to comment here however on your two statements that 'nobody told' you beforehand what the post-op reality would be like. I've been working in a hospital for the past nine years, and this is a frequently heard comment - sometimes made just 24 hours after a physician has sat down with the patient and family and carefully outlined the procedure, the recovery, and the prognosis.

When I was in ER with my heart attack, I have a very very vague memory of the cardiologist saying something about fatality statistics and risks associated with whatever was waiting for me upstairs in the OR - but I do recall telling our daughter two days later that 'nobody told me' anything about my recuperation or how bad things might actually get for my heart down the road. But my nursing friends reminded me subsequently that they witnessed quite a clear explanation from the cardiologist to me as they were wheeling me into the elevator. I guess I was just in no condition to be absorbing much of it during such a stressful emergency situation!

I think sometimes we are only capable of hearing or digesting small bits of information when we are feeling so overwhelmed, scared and stressed - all of which you were, are, and have been, for some time. Plus family members are famously hopeful - if the doc warns that there's an 80% chance of dying on the OR table, the family usually clings strongly to that 20% option, no matter how carefully the docs have laid out the grim reality, and then, not surprisingly, the family says afterwards that 'nobody told' them of the poor prognosis.

And as you say yourself, every elderly patient is different. Every diagnosis is different. Every surgical recovery is different. And it's only one week post-op - early days yet. You'll be amazed at how one day soon she will just 'turn the corner' with small improvements.

Your mum is in the best possible place right now, in spite of her emotional distress about being there. I'm wondering if the staff have suggested medications to help manage her anxiety? She should NOT be 'agitated and full of anxiety' right now!!!! That's what meds are for... You might consider them for yourself too!!

Which brings me to the subject of self-care! You've already seen tragic consequences of not taking care of yourself and your life through all of this ordeal. When we switch parenting roles with our frail elderly parents, it's almost impossible to remind ourselves that we also have a right to our own lives and especially to safeguard our own health while helping to support and care for them. It's very hard to do (I know this from personal experience when we had to move my mother, kicking and screaming, from her huge 4-bedroom house into a seniors home last year).

Good luck with your rehab and recuperation choices, and remember to take care of YOU! at this time too.

XOXOXO


http://www.myheartsisters.org

Marilyn37

I haven't been active on this post, but you touched such a nerve. I consider my self among the "young old" at 72. Still active with friends and working part-time. Last year I had an infection which involved the mitral valve which left a severe regurgitation. Was encouraged to have robotic surgery to repair and was promised that "10 more good years. " So I had surgery on January 8 and saw how difficult and painful it was for my children--who really worked hard to provide support. The bills were enormous, but fortunately I had good insurance coverage so it was not an economic disaster.

5 weeks after surgery I was told that the repair was not holding. The cardiologist recommended another surgery to replace the valve "as soon as I could recover" from the original surgery. I reacted very strongly to that and went to the state medical university for a second opinion. The doctor there was more positive. Said that leakage was in the "mild" range and that a rush to surgery was not warranted although it might be necessary someday.

Local doctor is quite angry that I got the second opinion and we seem to be at am impass. In the meantime, I am trying to "live in the now." and continue some of my activities--and all of that would be OK except that I am having a hard time regaining energy and the original symptom of dizziness has retirned (A listed side effect of two of my meds). The cardiologist says "just live with it." Others just say expect to take a year to get back to my life and that I am just being Impatient (which I am).

All that is to say that I really question the information given by the medical community to older patients. The is more to life than "10 more years." It is the quality of those years which matters!! If they can't provide more support and understanding, more surgery and medications is not the answer. Hope this makes sense--I just needed to get it out.

Ecksunbeam

Dear KK,

If it's any solace or comfort to you, in the long run, your mother will remember very little herself about this difficult time. Like many of us who have been through it ourselves, one day her head will clear and she will say, What happened to me? It can be far worse to be the helpless outsider observing our loved ones in pain than being the patient ourselves.

There is a BIG difference between a rehab facility and a nursing home. Rehab facilities are generally a beehive of activity from morning til night providing doctors, nurses, physical and occupational therapists, special baths, recreational activities, and a host of other specialty around-the-clock care that neither you, nor your family, cannot possibly provide alone, or even with the best home care. Make sure you take a tour of the facility yourselves before making a decision.

It helps to come up with a Plan of some sort between family members about who can provide what for Mom, and when so that you are not all there at the same time. I found with my own mother the most important thing was to assure her, and reassure her, and reassure her, that she was not going to be abandoned and left alone to either die, or be shipped off to a nursing home. That's why she's in "REHAB." And why not pamper her like a baby if and when the situation calls for it?

And remember to pamper yourself. As others have mentioned, you MUST also take care of yourself. There is only so much that either we, or the doctors, have control over--the rest really needs to be handed over to the Big Guy Upstairs.

May the Blessings Be!

Sherrie

grace5

Sherrie, you hit the nail right on the head there, I remember the day that my mum 'came back' she told me off for wearing stupid shoes in the rain and then she slipped right back into her role as a bossy old moo (in the nicest possible way!) Reassurance by the bucket load was the key, she was terrified of being dumped in a home but the place she went to was for respite care and rehab. She settled in beautifully, exercised every day, they told her how remarkable she was for kicking her legs so high and she loved the company. I couldn't do that for her, I couldn't 'make' her do anything, she needed people not emotionally connected to tell her what to do and encourage her to get better and to regain her independence, I don't know what I would have done without them, guilt, love and pity would have had me doing everything for her, bad for both of us.
And yes, you MUST look after yourself during this stressful time, I didn't, I ran around like a headless chicken, ate rubbish, smoked and hardly slept, my friend was diagnosed with terminal cancer at the same time so with everyhing on my plate I spread myself too thin and ended up here! Delegate, and share the load as much as you can.
Lidia xx

Annie7

My heart goes out to all of you. For 14 years I took care of my mother in law with Alzheimers. The last 2 years I had to place her in a home. I was at my wits end and down to 90 lbs. Her death was a blessing at age 84.
Babrbara Bush recently had aoritc valve replacement.,. She was in the hospital for about 10 days. You can google Barbara Bush/Aortic Valve and this may give you some information. She had one of the best surgeons in the country. Dr. Gerald Lawrie who is also my surgeon. Recently, I heard she is doing quite well. I do not think she had other heart issues though. My Uncle had his Aortic Valve replaced at age 80. They also did triple by-pass at the same time. He was in the hospital for 2 weeks. The last 4-5 days they added rehab to his regime. Now, I am not sure he went to rehab when he came home. He is a beer drinker and a golfer and I guarantee he was doing both. He has since driven to Florida twice and back from upper Michigan. In April he turned 85. I do not think he had a lot of help as my Aunt suffers with Lymphoma and had a quad by-pass within months of my uncle's valve replacement. Fear comes into play with any type of a serious procedure. The patient is scared and the care giver is scard and worn out.
I would call your local county Medicare office and see what is available and talk with Social Services at the hospital. Call your local AARP for advice. Plead for help. Call your church/synogogue ministry, also. We have people in our church that volunteer for this.
I am so sorry about your home. Please feel a healing hug around you. Things just have to get better. Yes, I will be praying.
Annie

kk_stl

You women are simply amazing to reach out to me when I haven't experienced heart problems myself.

Thank you for welcoming me so warmly to your community when I am nothing but a caregiver.

I just witnessed last night how a person can be brought back to life through aggressive drug intervention. I noticed there is a manual breathing tube ventilator hanging in her room and there was a tracheotomy machine cart outside her room. Someone please tell me what this means! Nobody will talk to me when I ask about it. They simply ruled out 3 possible causes of why my mom developed hypothermia, low blood pressure drop.

There is no impairment to her brain today thank goodness. I'm guessing that is what they were safeguarding against. I learned outside of surgery how she reacts to a breathing tube. She awakes during a endoscopy twice now and said she never wants to have one of those done again. Can she get full anesthesia that will prevent her from awaking again?! The last hospital claimed they could only do twilight anesthesia because there weren't enough beds or something. The gastro said if we were at a different hospital he could have used different anesthesia.

Ecksunbeam, I assure you that the surgeon and cardio danced around the issue of recovery to us. I understand how you can't be completely honest in front of the patient or they would probably not decide it is worth the chance things can get that bad. Who knows for sure how a patient would react to that truthful information to make an informed decision in their healthcare.

I beg any of you caregivers out there to call the surgeon's office back and ask them to provide you a candid explanation of recovery to you so that you can properly prepare in advance with money and resources, etc.

I am over the anger for the moment of how things were handled. We can only look forward. We can't turn back. This is an ethical responsibility of any decent surgeon's office to not let the family be surprised. The surgeon's office had an opportunity to discuss this with me in private when I asked to tour the ICU. I even said I don't like surprises. I'd rather know the worst case scenario upfront. I asked her what a caregiver should know in my mom's situation. She withheld this information with a policy of "don't offer information unless asked directly" and who knows how she would have responded if I had phrased it as worst case and average recovery times. They only told me of 3 risks of this surgery...kidney failure, stroke, heart attack.

Nothing about congestive heart failure, and tapenade (sp). I realize when my mom signed the consent form we were not given a copy....hmmm. I sorta thought that was strange but I put my total trust in them. Someday, I may ask to read this form and see how these other fatal conditions are stated.

Nothing like feeling you need to read the fine print or hire an attorney who can walk you through the legal jumbo on someone who you are placing your life in their hands.

It's hell when you can't trust these people but I guess the lawsuit frenzy these days have them feeling they don't have to stick their necks out any further than necessary.

Gosh, shame on me for letting my guard down. I'd read everything on a business contract for a house or car but on this?!

I suggest you make sure you get a PCP who is not intimated by the larger teaching hospitals to be your advocate. He came at the beginning and I kept waiting for him to come back but tonight when I told him my concerns he is becoming involved to attempt to go around their red tape. They want total control and final sayso on the treatments my mom receives. I asked today what happened to the patient having the final sayso?! They did not encourage letting me listen in on their rounds and I quickly saw how group think and not experience and knowledge played an ill hand in my mom's treatments. There are other hidden motivators like controlling published statistics that also play a detrimental role.

If we were not on an advantage Medicare plan with a flat fee per day and max out of pocket limit, one could easily go bankrupt.

Enough about the bad stuff...here is my question and maybe I need to start another thread about it.

Can anyone tell me how to control adrenaline that is stuck in overdrive to the point that you cannot fall asleep and you are in hyperalert mode heading for a nervous breakdown? Are there meds? In the past, I thought I could just rest and not worry about not being able to fall asleep and the inevitable happened. You think I would have figured it out by now but I definitely recognize the same symptoms and I'm fearful it will happen again. I have no medical insurance. How's that to add to the pot of misfortune. You could say I'm a classic caregiver headed for a trainwreck...either physical ailments or mental. My gut is bothering me today. Is it possible to develop and ulcer in a short amount of time like 1 week?!

This will make you laugh. I found myself clutching my chest as if the big one was coming even though I didn't feel any angina or tightness.

Is my hyper adrenaline mode disguising any pain I might be truly happening?

I know we don't have any medical doctors on this site and it can't replace the advice of a doctor, but I'm freaking out with my past emotional history that I might be headed for trouble. If I have to be absent, my mom will suspect something happened and it won't be a good thing. So, while I want to stop this for myself it's also crucial I do it for her since she is relying upon me.

I've pretty much revealed myself naked with this thread but I'm beyond pride, etc.

When my head finally hit the pillow last night it was pure exhaustion and my head sorta felt lightheaded and funny from it. I'm sure my antidepressant safety net dosage is working in overdrive to prevent anything from happening but I'm sure even with this precaution there is a breaking point.

My mom is finally getting a long overdue blood transfusion tonight and a permanent pacemaker tomorrow.

Does anyone know when seeing if a person can be removed from bipap or a temporary packemaker is a gradual stepdown method used or do they just go cold turkey and see how things react to the sudden drastic change of support. Is there any medical benefit from jumping to nothing and waiting to see what happens?! This seems rather cruel on the patient and adding more stress than their body may be able to sustain.

I was up 22 hours straight over the course of the invervention last night. For some stroke a miracle, I was so exhausted I could not get comfortably asleep and then found the ability to get the most rested 3 hours of sleep ever that has been sustaining me. I am not as wide awake but I don't feel like I could fall asleep either.

I'm not a hypochondriac honest but simply very acutely aware of how many body is responding to this stress.

I'm mainly interested in finding answers about being stuck in adrenaline over drive but please respond to what you'd like.

kk_stl

I was able to get some rest last night...not complete restorative rest like the 3 hours last night but enough that I am no longer feeling over adrenalized if that makes sense to anyone who has this problem of not knowing when their adrenaline reserve energy will suddenly deplete and you feel like you can't even keep your eyes open.

I've got to get a better handle on this with my body. I know what signs to recognize when I'm pushing myself too far but since my previous jobs have forced me to operate in this capacity of adrenaline fire chasing and pulling consecutive all nighters to meet a deadline, I will have to unlearn this behavior.

Didn't want you to worry as my last message I was somewhat panicked internally though from an external side I was as steady as could be.

I've received extensive acting training through the years to cover up the whole father alcoholism problems at home so not many people can detect when I'm in crisis mostly because I never confided in anyone. That has all changed for the better now and I have a small support circle who check in on me but they have jobs and other family commitments to handle themselves.

Kennarina

Hello again
Honey, you don't need antidepressants at this time - you need anti-anxiety meds. Please get some TODAY! You may also have other past history issues at play (who doesn't?!) but there's nothing like a little Atavan or clonazepam to make you feel pretty darned relaxed and better able to understand what's going on around you and to cope with your mother's changing situation.

And the sooner you can 'unlearn' what those all-nighters may have taught you, the better. You've probably been running on empty for a long time. That needs to stop, right now. Some of us have had to go through a serious heart attack to learn that lesson.

You can see first hand already the difference on how overwhelmed you feel with even a small amount of sleep.

XOXOXO


http://www.myheartsisters.org

MMaslek

Honey, with everything on you plate right now, you'd be odd if you weren't experiencing anxiety!!! How do you respond to benedryl? I sleep like the dead & my hubby can't sleep to save his life. If you are a sleeper like me, take 2 benedryl capsules about an hour before you wantto fall asleep. Don't worry, if there is a problem, your adrenaline will override the sleepiness If there's not, you'll get a good 6-8 hours of much needed rest. If benedryl don't do the trick, Atavan (generic is cheap) would be highly encouraged but that can make you feel spacy if you take it during the day. You can take a 1/2 tho, just to take the edge off but don't drive while you're adjusting to it.

If you can get a bit of physical, away from the hospital, exercise, even walking the mall or target for an hour, it may relax your mind a bit so you can better deal with everything that's going on.

My secret tip...
Hershey's Kisses release endorphins. If you carry a bag in your purse and pop one in your mouth when you feel particularly pressured, it may help a bit. That's my own secret stress buster, don't know if it works but I sure like an excuse to munch hershey's kisses!!!

Hang in there!!!!!

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