Disability/Handicap, Education, Family, Health, Mental Health, Wisdom

Congestive Heart Failure, Hospice, & End of Life Care

I do try to keep the content of my blog pretty cheerful but I also don’t shy away from pain at this point in my life.

A few things I grew up hearing my parents say was “the good, the bad, and the ugly” and “through hell or high water”. This is the story of how I lost my mom. It hurts but if anyone can learn anything and have a better experience from reading our story then I have accomplished my goal.

If you are wondering why I would want to share such a painful subject I would say how could I ignore the loss of my mom? It felt wrong to put out any other posts without honoring her by telling her story. Everyone grieves differently and with corona restrictions keeping us all isolated, I wanted to share my mom’s story to those who would have wanted to hear it.

Many people would have had that opportunity to hear the story and ask questions by attending the viewing or funeral. Those were better times and with the covid restrictions and risks, we decided to have a small and private outdoor memorial in lieu of the larger and better service she so obviously deserved.

Today would have been my mom’s birthday. It is fitting that I would finish this post about losing her on her day. Because so many people in our family have passed near to their birthday, and November has so many losses in general, Billy and I have decided to review our important papers every year in October.

We hadn’t gotten any wills drawn up before this year and this experience has shown us the importance of having your wishes documented and your financial documents in order. We strive to be more like my mom to make our deaths less confusing for the loved ones we leave behind.

Please forgive me if I made any mistakes in the re-telling. Being sleep deprived, depressed, and stressed doesn’t improve memory.

I did my very best to be fair and kind to all who were a part of this experience. Please be mindful of the people who’s heart is still bleeding from this loss if you decide to comment on this post. Thanks so much.

We Miss Mom/Nana

Losing my mom is painful, she was my best friend, personal health advisor, and biggest cheerleader. Taking care of her, my autistic brother, and our kids, was our purpose. Caring for all of these people seems like a lot but we have a good system where everyone helps one another.

My son would get Nana what she wanted for breakfast, I would get her lunch, and my brother would make her a salad for dinner if she didn’t like what we were cooking.

She wasn’t picky but Billy’s salmon cakes with Worcestershire sauce were not her favorite and she preferred salad on those nights. Billy was always during the night and early into the am if she needed anything or if anything broke.

Billy or I would run and get her and my brother’s prescriptions. We taught her how to order groceries online so she could still shop for whatever she wanted. We would go get her the items that are never available when you order your groceries.

More recently as her health declined I was taking mom to all her appointments and we had a fun Friday appointment every week.

I reminded her every Friday to buckle the belt on her motorized scooter for riding in the car. Then I would drop her off and she would go into her appointment in her wheely chair and when I picked her up we would head to Starbucks or Chick-fil-a for a fun treat.

It might sound like we took care of mom but in a lot of ways she was still taking care of us. My mom was a terrific financial planner. I’m pretty sure she learned it from her dad, just like the rest of her siblings. She did a fantastic job managing finances and also managed my brother’s paperwork and his account.

More recently we had discussed that keeping track of all the bills was becoming more of a challenge so we were looking at ways to make it less so. We had landed on her writing me a check and us automating payments out of our bank account.

She had been worried about the savings attached to her account and hadn’t wanted to give her account numbers out to automate payments.

My bank account carries a much lower balance in general so it seemed like a good fit. We actually never got around to switching over as she got sick very fast and couldn’t heal from it this time.

What Does this have to do with Crafts?

Not a whole lot directly I am afraid. It is just information that I hope may help someone make end stage decisions for themselves or loved ones as that part is really challenging, especially when you can’t predict if someone can heal or not. You just have to assess your own situation and make the best decisions for you.

I also thought it was an important topic to discuss being as covid has most facilities across the nation limiting or restricting visitation to patients. As corona virus continues to make some incredibly ill, I thought this was a topic that might help those in similar situations weigh their options and make those hard decisions.

What this does have to do with crafts is that my mom taught me to sew and crochet, over and over, and over… I was also taught by another friend to crochet but it’s easy to forget if you haven’t picked it up in awhile. When I say someone taught me something it usually means they put real time in because often teaching involves multiple sessions.

My mom also inspired me to paint. We didn’t get to paint together often but I have good memories of talking about Bob Ross, looking at the paintings she painted, and attending a painting workshop with her and my oldest daughter.

Mom also showed me the value of determination and climbing a giant task mountain one step at a time. She was methodical in her approach to things and very intuitive and though she didn’t often appear strong to those who didn’t know her, her problem-solving skills and humor helped her power through situations that would have taken down many others much sooner.

A picture my dad took of my mom in Europe, sorry I can’t tell you where but I’m guessing those are the Alps.

Hospitalized

Mom had congestive heart failure and was retaining a lot of fluid. Her blood pressure had been really low and she wasn’t able to take enough diuretic to get rid of the fluid. She had accumulated over 40 lbs of fluid in her past few months. I don’t think either of us knew it was that much but her legs and ankles were really swollen.

She had decided to go to the local hospital even though we knew their treatment was so aggressive that it had landed her in long-term care before. She had some peace of mind knowing that this time we would bring her home to do her long-term care. We were all hopeful that she’d be able to come home and we could nurse her back to health.

My mom, pregnant, in a hospital in Germany in 1984.

We truly wished that our local hospital/medicare had more relaxed guidelines when it comes to congestive heart failure. If she had been discharged 3 days earlier I feel like we might have been able to keep her going a little longer.

Or rather that she would have been less confused and able to tell me how to keep her going a little longer. We told the hospital that the amount of diuretics they were giving her was too much for her system. They have to follow a Medicare standard and hospital policy though and their hands were tied.

By the time of discharge the amount of diuretics given had compromised my mom’s kidneys and they would no longer function properly. They told her they would only release her on hospice but we prayed for a miracle and got her released on palliative care.

She may have felt more comfortable signing up for hospice then if I had been able to be in the hospital to negotiate which medicines she needed on her list before she signed up for hospice. We were all still hoping she would be able to slowly heal from this trip as she had done so many times before.

As it was she didn’t feel comfortable signing up for hospice in that moment and she spent 3 more days in the hospital receiving over quadruple the dose of diuretic that she usually took, and she had peed once a day for 3 days in a row and no one in the hospital seemed concerned enough to do anything about it or make any changes.

My mom’s most recent hospital admission. I had been asked to send a family photo for my grandmother’s room because she is in long-term care. I had asked to take this photo of mom so I could add it to a collage with the family. This was the last photo of her that I took and she felt like crap but still smiled because that was the type of person my mom was.

At Home

It was very apparent once we got mom home the game had changed. She was happy to be home and was in good spirits but she was more confused than usual, wasn’t eating enough to sustain a toddler, wasn’t drinking as much as usual (even less than the fluid restriction amount), and she couldn’t pee more than once in a 24 hour period.

She still looked to be improving some because she hadn’t been eating at all in the hospital, but we were having a hard time close to her 24 hour mark of not peeing. Her oxygen levels would drop and I would be throwing O2 at her trying to avoid stroke or cardiac arrest.

This had me freaked out enough to recommend hospice which was a painful subject. My mom wanted to avoid hospice as long as possible and had avoided signing up for years. She probably did qualify much sooner. Her end goal was to die comfy in her own home which meant hospice was the plan eventually.

She just hadn’t felt ready to sign up for hospice before that and it felt like giving up to her in many ways. I reassured her we weren’t giving up just because of hospice and that I had gotten all the meds we needed to try and get her healthy again.

I had been afraid that one of the nights she was going to have an issue that I couldn’t keep up with, and I was afraid to not have the meds that she needed to keep her comfortable.

Since her wish had been to die peacefully in her sleep I was concerned if we did not get her on hospice that she wasn’t going to get the ending moment she had in mind.

I still really wanted to heal my mom though and unfortunately if you don’t have it on your med list when you go into hospice you aren’t going to be able to get it, unless perhaps you need an antibiotic for bronchitis or whatnot.

They had removed her steroid from her last med list at the hospital and I wanted it back before she was placed on hospice. I knew it would help her breath better, feel better, and I hoped that it might increase her appetite as well.

I had calls out to everywhere trying to get her meds in order when everything really hit the fan. She got incredibly sick so fast. Nauseous, confused, so weak she couldn’t sit up in bed or even roll over. I called out to her close relatives and best friend to call or come see her ASAP because I was sure she couldn’t last much longer from all this.

I got so lucky her best friend, who is an experienced nurse, saw that since her kidney function was down one of the new medicines they put her on in the hospital was overdosing her.

Digoxin is a good medication for a fairly healthy person but if you have compromised kidneys it can make you incredibly ill very fast. I learned that I had to keep an eye out for medicines with a high-toxicity when caring for loved ones who’s organs are injured or aren’t in great shape.

My mom’s friend recommended I ask her cardiologist for approval to stop giving her that medication and to ask them to run a medication level, a test that showed Congestive Heart Failure progression, and to test kidney function before we agreed to hospice and couldn’t get any of those answers.

They certainly hadn’t volunteered any of that information from the hospital but these are corona times and my communication with the hospital had been limited by the new visitor restrictions, and mom had been increasingly confused so we couldn’t sign into the portal for answers.

So now I had her at home, she was still confused, and on some different medications then before. I had the call out for adding a steroid back on her med list but hadn’t received word yet. She had steroids at home from before but you can’t just decide to stop new meds and add in old meds without doctors approval.

Her lungs had been crackly and her 02 sats had been dropping at night. I didn’t want to give her her diuretic but we were afraid her lungs wouldn’t stay clear enough without it and it seemed like the best option at that point. CHF and some of her other issues cause pulmonary edema and this seemed like the most dangerous of all the conditions at this point.

She also had fibrosis of the lungs, COPD, and scarring from being Alpha-1 antitrypsin deficient. Her breathing would not tolerate any sort of increased issues so I asked if she wanted the diuretic and she said yes.

She was confused a lot since the hospital stay and I didn’t feel confident about this or her answer. I still wish that I had been able to give the steroid instead of the diuretic at this moment, but the diuretic would help keep her airway clear since the steroid was not yet an option.

The diuretic worked but feeling so terrible from the digoxin overdose made it challenging to drink enough fluids and she ended up severely dehydrated before the day was over.

Test Results

Her digoxin level came back at 2.5 after 2 days of not taking this medication and a normal level is a 2.

Her paperwork later read unintentional overdose and critically high levels of digoxin. Her compromised kidneys had indeed stopped processing medications well and we would have lost her even faster if her best friend hadn’t spotted the mistake.

Her kidney level indicated that it was compromised but that was something that may have healed over time.

Her Congestive Heart Failure numbers were scary though. My mom had always done a wonderful job of balancing her multiple conditions. Her heart had just weakened over the years and she had had trouble keeping her blood pressure up enough to take a diuretic.

I don’t know what her CHF numbers were when she went into the hospital but since they were suggesting she come home on hospice that means they predict you have less than 6 months to live.

The other thing the blood test showed was that she was severely dehydrated. I was told if I didn’t get her back to the ER for IV fluids that she would be critical in a matter of hours.

This is why I still feel awful about giving her that diuretic even though it was my only lung clearing option aside from the nebulizer and inhalers she was already taking.

This was 2 days before Thanksgiving and her on call Palliative Care nurse gave us instructions on how to get her the IV fluids to save her live without admitting her back to the hospital.

Mom and I were both terrified as the ambulance came to take her back to the hospital. I wanted to be with her but corona guidelines didn’t allow visitors.

I called 4 times to give the ER instructions but had to wait until she got there before I was able to leave instructions for her care. The ER did end up calling me and doing a conference call which made mom and I feel much calmer.

We had wanted them to give her a catheter because she hadn’t been able to pee more than once in a 24 hour period. When we would get close to the 24 hour mark without any urine her 02 sats would drop severely and I was terrified fluid was backing up in her lungs.

The catheter did a great job and allowed her to evacuate urine more frequently, which helped her to feel better, and seemed to stabilize her breathing a bit more.

They did run more blood work while she was there and said she may have had a heart event recently or might have one any moment. They did recommend her staying so they could try and save her life but the same hospital had sent her home to die a few days earlier.

Knowing this, neither one of us wanted to admit her again where she would be isolated from friends and family during what could possibly be her last days.

The ambulance brought her home early the next morning and she was happy to be home and we were all happy to have her home. We really thought she was on the up and up. Her confusion was lessening and she was getting some of her appetite back.

We still thought that a heart event was unlikely because she hadn’t had any pain aside from bladder spasms from being dehydrated and the addition of the catheter.

We weren’t sure she wouldn’t have a heart attack or stroke in the future but since she was feeling better we were hopeful she was healing and that her CHF numbers would start coming down.

I had called the day before to her general practitioner to get her some medication for bladder spasms which she got often with diuretics and dehydration and I knew hospice would be in later to sign mom up.

Once I had meds for bladder spasms I felt comfortable that we would have everything on her medication list to nurse her back to health, even if she was on hospice. With hospice came the security of having the medications to make her comfortable if her condition went south.

Hospice

A man came a little later in the morning to counsel us to see if hospice was right for us. Mom needed the extra care and they give you the comfy meds to have on hand in case she were to have a heart attack and be experiencing a lot of pain.

We were sad to see she would lose her Friday medication that was for her Alpha-1 deficiency but we knew she wasn’t going to be strong enough to travel to the hospital for awhile anyway.

We knew if we could get her healthy again we could switch back to palliative care and she could continue this medication in the future so we decided to sign her up for the hospice care.

The signing up for hospice was a long and boring paperwork process so mom took a snooze while we finished up. The nurse came as the man was finishing up the paperwork and the hospice “comfort” medications arrived like 15 minutes after the nurse arrived.

I was disappointed when mom’s GP called back and said that she couldn’t prescribe anything for her because everything that could work for bladder spasms couldn’t be taken with compromised kidneys. She said to ask hospice for something and I was a little frustrated by that because mom had just gotten on hospice a few minutes before that.

It seemed like her GP had waited for hospice to sign mom up before she would call me. That and she had her assistant sit near her and she wouldn’t talk with me directly. Her assistant kept asking the GP my questions and repeating back what was said. It was ridiculous to play a game of telephone on the phone and I was not impressed at all by the whole exchange. I enjoyed talking to her cardiologist much more earlier in the week when he gave me her medication levels and I wish her General Practitioner would have shown the level of professionalism that he had in his willingness to video call, show his face, and talk with me directly.

It always seemed like people were writing my mom off as a dead man walking but this wasn’t anything new. She had survived over 15 years with a “you might go any day” label in every medical file. I believe this was why her cardiologist was her favorite doctor. He had supported her through her complicated medical conditions and hadn’t written her off. Without him I think she might have given up long before. I appreciate him so much because he is a lot of the reason that my mom got to meet her 3 grandchildren.

I feel like it is important to mention her cardiologist was not the doctor who prescribed her the digoxin, and he also understood that giving too much diuretic was harmful to her kidneys. I wish that mom had wanted to go to the hospital that was further away so that he could have been in charge of her care. I feel like he may have had the magic touch that would have kept her going a little longer but only god knows.

End Days

The nurse was there discussing what all we needed to make my mom comfortable in her final days. I knew we needed a second oxygen machine to supplement her oxygen when she was struggling to breath. She had come home on 10 liters of oxygen and we had had to supplement with the tanks that she generally used for travel when her O2 saturation had gone too low.

Her wish was to die peacefully in her sleep if she wasn’t going to make it. This meant that I would have to keep her lungs going as long as possible to give her heart time to fail. If you are wondering why she would choose one over the other, it’s that having your heart stop from ventricular tachycardia (sudden cardiac arrest) is a much more peaceful death than many other ways, and her wish was to die peacefully.

She had “died” a painless death from V tach and had been brought back years ago and she had also had a heart attack at the age of 20 and that had been pretty painful. If she was going to pass we wanted to help it be less scary and as painless as we could make it.

We had prepped all the things she needed if she were to heal or if she wasn’t going to make it. We had crossed all the t’s and dotted all the i’s but my family all still thought we would have more time to spend before the end came knocking at the door.

That was until the nurse took her blood pressure. In that moment we all knew the end was close. My mom was an experienced RN and I could see it written on both their faces that we weren’t going to be able to keep her for very long. She stopped eating and drinking that afternoon except for a tiny sip of coffee on Thanksgiving. She loved coffee and I found this a fitting “last meal”.

Coffee was always her favorite “breakfast” and mine too. This plaque was one her and dad brought back from Germany and it says “Give us this day our daily bread” from the Lord’s Prayer.

The acceptance that she wasn’t going to make it was a bitter pill after the happy sad roller coaster we had been on the last few weeks. We kept her as comfortable as we could, closely monitoring her O2 saturation until she passed early the morning after Thanksgiving.

Final Thoughts & Unanswered Questions

I wish that the hospital had just raised her blood pressure and sent her home to manage her own medications. There is no guarantee she wouldn’t have had a heart event but her kidneys wouldn’t have been injured like that and she wouldn’t have been overdosed on the digoxin.

She wanted to come home several days earlier but if you sign out before the doctors approve you Medicare won’t cover the cost. For frugal people like my mom this meant that she was staying until they released her even though she thought they were killing her. If she had decided to go on hospice at this point the Medicare guidelines would have relaxed and she would have been able to come home earlier.

All that being said she was so afraid to go on hospice, afraid of what it meant, afraid that they would put her down like a dog. It’s true that they do not encourage you to heal on hospice, and they won’t do any life saving techniques.

You won’t get any more ambulance rides and if you personally take a hospice patient to the ER to get IV fluids it might kick them off of hospice. It is good to know that you can still change your mind and come off of hospice anytime but that doesn’t get rid of the fear of what it means to be on hospice.

Something to consider, if mom had said yes to hospice instead of letting them continue the aggressive therapies she may have gotten out with her kidneys still in good health and without overdosing on the digoxin.

I may have received her back mentally sharp and she was always such a pro at managing her condition. I know anxiety about the end was why she didn’t sign up for hospice until she was backed into a corner by all her conditions. She really didn’t even want any other life-saving techniques the hospitals or EMTs had to offer except maybe IV fluids.

If I had been able to be with her at the hospital during these decisions the events may have played out differently, but we can’t change the past we can only learn from it.

I can’t tell you if signing up for hospice sooner might have extended her life in any significant way because her heart may have failed sooner if she hadn’t gotten rid of as much of the fluid as she did on the hospital’s aggressive therapies. I can only tell our story and you and your family will have to make the decisions you think are best for your loved one’s end of life care.

I will say hospice is terrific if you really are in the end stages of life. They come in, and provide support and reassurance to everyone during a difficult time. While no one can control death the nurses have the experience to help steer the death experience and make it more comfortable.

I do think more people should consider caring for their loved ones during their end of days in their own home. If you are willing and able, and your loved one wants to pass at home, hospice does help support everyone through the process. I helped my mom care for my dad at home when he passed in 2008 and it was so hard but it was what he wished.

Because I had supported my mom through dad’s end of life care I knew I could do it for her. I am no super hero, I have limited medical knowledge, and I did not feel confident at all, but neither did she when she was caring for dad and she was an RN!

I might be a stronger person now then I was when he passed but I also think because I was more involved in my mom’s care than I had been with my dad, I had less questions and less what if’s. There were still a good many “what if’s” but not as many as when you are not there to aid your loved one through the process.

I do wish that I had learned more about her daily routine before she got sick. I had a hard time figuring out which were new meds and what she had already been on.

I ended up drawing up her medication schedule on a white board which actually helped mom’s nurse friend discover the digoxin OD.

I also scheduled in alarms on my phone to remind me when to give her nebulizer treatments because keeping track of time is difficult when you are sleep deprived.

Though I am still grieving and not quite sure how I am going to feel day to day, I feel better knowing that I did my very best to aid my mom in a comfortable and loving death. Do I still feel unsure about some of the decisions I made? Yes of course I do. How do I get passed that part of losing a loved one that was in our care?

How to Manage Regret & Guilt from Being an End of Life Caregiver

My mom and I learned so much caring for my dad at home when he passed, and so we took steps to make our wishes clear ahead of time (yes I made some wishes known to her too in case I ended up passing first). If you know what your loved one wants from their life and death it makes it easier not to agonize over every single decision.

Praying for strength and guidance for the whole family doesn’t hurt either.

I also say to make friends with your good angel. You will hear that evil voice that sits on one shoulder and tears you down so don’t block out that angelic voice that reminds you of all the good you did and lifts you back up.

It’s also both terrifying and oddly comforting (when I am not feeling confident) to know that the hospital, with a team of people watching mom’s care, made mistakes too.

While they may have caught the digoxin overdose in enough time, they also may not have and she might have died in the hospital sick, confused, and several days before she did at home.

While covid is keeping hospitals full, past the max, the quality of care will not be as good as it was in the past, which is something else to consider when you are making those hard decisions.

A lot of mom’s symptoms just looked like typical end of life symptoms, not eating and being very confused. I know I wouldn’t have caught it without her best friend pointing it out.

We are all human and all of us make mistakes but I was very happy mom didn’t pass away feeling as terrible as she did on that overdose. Also the hospital sent her home recommending hospice so I know they weren’t expecting her to live more than 6 months.

When the expectation of all the health experts is that they are “near the end” it does reduce some of the pressure you can feel as a caretaker. I still would have loved to heal her but I’m glad we could give her the next best thing, which was to die peacefully in her home surrounded by the people who loved her the most.

Maybe hospice and dying at home wasn’t very appealing to many when you were able to visit loved ones in the hospital or long-term care facilities, but with corona increasing visiting restrictions the only choices many people have is to die in the hospital without their loved ones, or to die at home in the care of their loved ones.

The unexpected benefit we got from caring for mom at home was that we got to grieve her passing together, with her. We were there for each other, got to spend a little more time together, and we gave each other strength.

I know for certain that no hospital or long-term care facility would have provided the level of care and attentiveness that we provided during her passing. That is not a judgement, it is just a simple fact that mom was our only patient vs care facilities having many. Billy and I did alternate caring for our kids and caring for mom.

We both wanted to be available for mom and the kids and it felt like taking turns was best for everyone. The kids needed to talk to both us parents for comfort, they wanted to ask questions, and it’s helpful to the person passing to know that family members will support each other through the hard times. Our whole family got to say goodbyes and “I love you’s” to Nana over and over.

I know saying goodbye over and over sounds like it would be an awful experience for kids but Billy and I learned the hard way through the passing of other loved ones that memories aren’t very clear and you tend to beat yourself up about things like “Did they know how much I loved them? Did I tell them that they were my role model? Do they know how many times they saved my life? Do they know I will miss them forever? Did I tell them that they were my shining star when the world turned dark?”

My oldest daughter did get the opportunity to talk to Nana, and tell her all the things, and helped provide her end of life care, and after Nana passed my daughter still had a lot of guilt about having wanted to do more.

We were able to assure my beautiful daughter that she did so much for Nana. Because of her, Nana was inspired to keep trying, and keep healing. It bought her over 12 years more then anyone ever expected and she was able to meet all her grandbabies.

We told my daughter that Nana was certainly the happiest when she was around her grandbabies. My daughter felt this was right in her heart and was reassured because Nana chose to be here with all of us, out of all the places she could have spent her last days.

I knew without a doubt we had made the best decision for our family when my 2 year old daughter climbed up in Nana’s hospital bed and gave her the biggest loving squeezy hug she could give her. I know mom felt loved, cared-for, respected, and honored by her family.

Nana and the kids were super close. This was a Lowes trip with my youngest back when she had felt a little healthier. If I remember right we were picking out cabinet handles for her kitchenette.

I can’t tell you what is right for you but I know that bringing mom home where her other family could visit, and she could hear the sounds of her beloved grandchildren, was right for us. I am heartbroken we didn’t get more time and I’m overjoyed we got more time than we ever thought we’d have.

I’ll miss you forever mom and I love you to infinity and beyond ❤

My oldest and Nana enjoying the moment. The kiddos kept her “young and healthy” far longer then any health-care provider ever predicted.

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