Help for Healing

Bitter & Sweet, living daily with grief


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Release

Phew!

After a very emotional and exhausting week, Dad is coming home tomorrow! I know it could have been a much longer time, but it felt like it was a really long road. It was weird leaving rehab today, knowing that on a Saturday morning none of them would be there when he is discharged. After a while, it feels like they are family. The physical and occupational therapy department were really great with him. They liked working with him too because he is just a nice guy and they appreciate him. It sort of reminded me of when I left Hospice after Tim died. These are people you start to see every single day, and suddenly you know you will probably never see them again.

Plus, there is the connection of feeling grateful to someone who has helped the person you love. When someone takes good care of your family, your child, whoever, there is a warmth toward them that doesn’t go away. There were obvious problems that I’ve blogged about previously, but there were many who did their jobs extremely well.

Dad is counting down the hours. They are letting him out at 9 am to accommodate my schedule because I have a hellish day tomorrow. I need to get him all packed up, transported home, unpacked, and have his meds ready for the week, all before 11 am. I appreciate them getting him out earlier for me.

My sister from Tennessee and I talked about the need for someone to keep an eye on things for the next week. The assisted living home where he resides think it’s a great idea as well. Truth be told, I think Dad does too. No more falls. He needs to be careful. Sometimes he still struggles with buttons or shoes. Someone should be nearby when he showers, just in case he loses his balance. We can hire staff to handle those things, but it’s frankly a ridiculous amount of additional money. I’m hoping we can handle it ourselves.

Monday he meets the doctor at his living complex. I’m hoping we like her. After that, I will have to buckle down and help him with all his Christmas preparations. We’ve done what we can already, but there will be plenty of last minute things. Too bad hardship doesn’t check in with your schedule. It always seem to happen at the most difficult time. But there is no one that can control that. And in a self-centered society that promotes individual happiness, the art of sacrifice is sometimes a lost virtue. I’ve been studying a psychologist who bucks that bologny and pushes for putting others ahead of yourself. It’s refreshing to read him.

Thanks to all of you for your prayers and support and visits and love and the countless hours listening to me vent. And yay to dad, who does his best to push on, even though he has been ready for a long time to be done with this side of heaven. Love you, Dad!

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Granddaughters

This week I had one of the best weekends of my life. I was totally burned out and exhausted from everything going on around here but I came back with my heart full and ready to tackle things again.

I went to Georgia to see my daughter Emily. The occasion? The birth of my granddaughter Sabrina! I couldn’t wait to get my hands on her. As you can see from the pictures I had received, she is utterly perfect and the wait to go was torture.

Presley's birth

Miss Sabrina, like most newborns, was not sleeping through the night. In fact, she was eating every 90 minutes, even though she is formula fed. Emily was as exhausted and burned out as I was. I got to spend the last couple of nights with Sabrina in the same room with me so I could get up with her. We discovered using a pacifier would hold her off and then she would eat more when it was time. One night she actually slept five hours!

I need lots of sleep. A good night for me is eight to ten hours. While I was there, I didn’t get much more than four hours of sleep and it didn’t even matter. I decided after spending the first night with her cuddled up on my chest for most of it, that we were bonded for life.

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But I got much more than I bargained for. Emily’s partner also has five children. I discovered all five of them were going to be there for the weekend as well. Aubry told them that she would share her grammy. “You can kiss my grammy if you want.” Before 24 hours was over, the younger ones were calling me Grammy. In one trip I went from two grandkids in Georgia to eight! I couldn’t help but look around their beautiful house and remember that when I was young, this what I had envisioned for myself. It’s not what happened, but this is happening now and it’s beyond lovely.

The dad would tell the girls to go chill out and give me a break. I told him that I live with all boys who hang out upstairs and don’t think it’s cool to be with me. I am often very lonely. I was loving having them fighting over my attention. I didn’t need a break!

They had to take turns, but I got my hair done, my make-up put on, and had several different nail creations. I’m not used to girls! Emily just kept telling me how brave I was. It’s true, some of the end results were a bit frightening. I decided when the bright red wouldn’t come off my nails, that I would show them off proudly as the sign of a good grammy.

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My sister and her family even came up from Tennessee for a night. That night there were nine kids! And my great-nephew is unbelievably cute. What a weekend it was. I came back and went directly to rehab to find my dad doing incredibly well. He looks like himself, is smiling and joking. We are talking about discharge next week!

Talk about blessed. What a week!


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More Madness

The good news from last week is that Dad was able to legitimately be in the hospital until Saturday and was transferred to Rehab. As always, there are great professionals, average, and not-so-great-at-all. It is still the policies and procedures that make me crazy because it is a set-up for nonsense.

Dad arrived with eight stitches in his head. We had been told they would need to come out in seven to ten days. I figured that wouldn’t be a problem because he is going to be in a medical facility anyway, right?

Right.

He was admitted Saturday and that is when I started asking questions about the stitches. Dad is going to need these out on Monday. Yep. Okay. I find out that “his” doctor (the one assigned) came in early Sunday morning. I asked if there was anything about the stitches. Nope, he didn’t seem to notice them. Please send a note to him because those stitches need to come out. Yep. Okay. Apparently my voiced concerns did not warrant a note in the chart so he wouldn’t overlook them.

I come in Monday and guess what? Doc doesn’t come in on Monday. Tuesdays and Thursdays only this week. Fine. Can you please make sure the note is there for him? Yes, it is.

I come in Tuesday. Doc came in the early morning. Guess what? He didn’t look at the stitches. The nurses are the ones to take the stitches out but they aren’t allowed to without “doctor’s orders.” This actually goes back to the emergency room because the doctor there should have written orders for them to be taken out, but he didn’t do his job either.

Now I’m mad because it’s twice he’s seen Dad and nothing has happened. I said I want the doctor on Wednesday to look at him then. Nope, can’t do that. Why? Because we can’t bill for more than one doctor. But don’t worry, they’ve only been in seven days. Um, no. It’s been 10. Not sure how they count, but I know they are wrong.

The billing thing royally ticks me off. I go in Wednesday and go to the social workers. I tell them that their billing protocol isn’t my problem. They agree. I told them it is shameful if a doctor can’t spend less than one minute to look at the stitches. It is merely a hoop that needs to be jumped through. The nurses know they need to come out, but they can’t do it without orders. The social worker tells me that the doc IS coming in, even though it’s Wednesday. Phew!

I go to the nurse and tell her to PLEASE not let the doc forget to see the stitches. She says that the social worker is wrong. He is NOT seeing patients today. I go back to the social worker and don’t really have to find the words because she can see the look on my face. She says she will take care of it.

A nice nurse eventually comes and says that if the nurse practitioner happens to show up, she will have her look at Dad. If not, the doc will be there in the morning. She reassures me the nurses have been checking every day and the stitches have not become embedded into his skin so it’s ok. She manages to persuade me that it really is ok.

I come in this morning on Thursday and the doc hasn’t been in yet. He still hadn’t been in when I left at noon. I had to leave for work (imagine that, I have an actual job!) so I asked the nurse to PLEASE call me as soon as the damn stitch thing is resolved. She had already told me that she agrees the stitches definitely need to come out.

As I’m writing, I still haven’t gotten a call. My niece is on her way there. I told her to text me what is going on. She won’t be aggressive with them like I am, but if it gets to be 3:00 and they aren’t out, I will have to go back for a second time today and it will be very, very ugly because I will be very, very mad.

It’s all just stupid. There is no other word for it. Continue reading


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Medicare Mayhem

Dad fell last weekend and wound up with eight stitches on his head.

Then they figured out he had heart issues (which probably caused the fall) and he was transferred to another hospital and had a pacemaker put in. All of this was new to us so there was a huge learning curve. Plus of course it’s emotional to have a loved one with continued medical problems. Then you add the lovely medical system which is sorely lacking in common sense and it’s enough to drive even the sanest person crazy.

I keep a medical journal for my dad. I am going to share just one day’s entry with you so you can share in the madness. Of course I have changed the names to protect the guilty.

Wednesday:

Called Hospital G to ask them to give the surgeon’s assistant my phone number in case she saw Dad before I could get to the hospital.

Surgeon’s Assistant E called (Yay! She got my message!) and said that dad should be ready for discharge sometime today

Called Assisted Living (where Dad now lives) to let them know Dad would need his stitches out.  They said, “They don’t do that there.” I told them the doc at ER told me that assisted living usually handles that. They said they would have to get back to me. Also said they could help dad with getting dressed, etc. because his arm will be in a sling for six weeks but they would have to charge extra.

Called Assisted Living again to ask why scripts require a two week notice, also asked about the stitches; she said she would voice my concerns to the correct people and then have them get back to me.

Nurse S, hospital charge nurse from Hospital G called; said that dad had been evaluated by PT and was unable to walk properly, even with a walker; he would not be released and needs rehab; crap!  he will miss Thanksgiving 😦

Social Worker J from Hospital G called; told her I had heard the news; she said the problem is that medicare would not pay for rehab so it would be all private pay; I asked why and she said he needs to have been in a hospital for 3 overnights to qualify; I reminded her that had been transferred from Hospital M; she said the problem is that his status was “observation” which does not qualify; she was going to do some research and get back to me

Called Hospital M’s president as I had met him the day before; his assistant answered; I told her the situation and asked if they could change his status; she said their patient advocate was on vacation this week; I needed to call Patient Advocate L from Hospital Ge and she would communicate with the right person

Left message for Patient Advocate L and paged her; continued to do so every 30 minutes

Called the number I had for Medicare; 30 minute wait so I left a message

Patient Advocate L called back; said the criteria for hospital status is very strict so it can’t just be changed; if they do, we could end up having to pay for the hospital stay too; said she was going to pull in Head of Discharge Planning M to get a team together to try and find a solution

Social security called back; I had the wrong number for Medicare; called Medicare and they said that acute inpatient rehab (in a hospital) is covered by them and does not require a 3 day stay; sub acute skilled nursing facility rehab is not covered without a 3 day hospital stay; I asked if there was an appeal process and she said no

Talked with Nurse S about this information; she said Dad would not have the stamina for hospital rehab; it is at least 3 hours of intense therapy daily

President’s Assistant at Hospital M called back with another name because I had left a message for her saying Patient Advocate L hadn’t called back; I told her I didn’t need it and a team was working for us

Talked again with Nurse S; she said that if I took Dad home with me, he would need to be watched 24/7; she could set up services at home if his primary doctor (who is at Assisted Living) would write the orders

Assisted Living Head Administrator S called back to address my concerns; she said that express scripts requires time to deliver and that’s why it needs 2 weeks; I explained that wasn’t what I was talking about; I was referring to Assisted Living Doc J ordering scripts from them on the day I ask for them; it wasn’t happening; she said Dad would probably require assistance with dressing, shaving, etc. because of the sling for 6 weeks and I asked her for a ball park rate of how much that would cost; also, explained that we needed orders for rehab if he came to my house; said she would have to call back

Nurse S said the team made Dad’s status in patient as of today; if he stays until Saturday, medicare would pay for rehab

During all this time, dad was extremely out of it; I found it he had taken a narcotic for the pain (which explains it; he reacts very strongly sometimes); he was sitting in a chair, bent over sleeping; at one point he woke up and asked about the macular degeneration grid he uses for his eyes; I asked Nurse S about it and she wasn’t familiar with it; I suggested she google it; she did and printed him up a grid.  Then it occurred to me that if he took the meds before the PT evaluation, that could have effected his walking; I talked to the staff but they insisted that he was alert and that had nothing to do with it; I disagreed, but there was nothing I could do about it so I dropped it (Common sense tells me that if the meds had him drooling on himself for five hours, it probably effected his balance while walking, but I got the ‘ol “WE know cardiology patients” stuff… Well, I know my Dad!!)

Social Worker J called back;  I had asked her to look into Dad’s secondary insurance; she did and they will not pay for rehab either; rehab is $490 a day and requires a 7 day advance payment before start; I told her that the team had changed Dad’s status; she said no one kept her in the loop and that is not an option and we might also end up paying for the hospital stay; she said she would discuss things with Discharge Planner M and get back to me

Assisted Living called back with the administrator and social worker on the line; they said they felt that the best option for dad was to be released to them and Doc J would write an order for rehab there; I (or family) would have to come at least twice a day to assist dad with dressing, undressing or else we would have to pay; 2 showers a week is $150/mo; the rest would be $300/mo, ballparking about $450 extra a month; I said I would have to discuss this with the team and get back to them

Surgeon S’s office called to set up a 2 week follow up appointment

Talked to Social Worker J; said she is out of the loop now; Nurse S is the one who will follow up

Nurse S said that Surgeon S’s assistant noted that dad’s blood pressure dropped; this is a legitimate qualification for status as an inpatient stay; he will be moved to another part of the hospital in the general population vs. the cardiology unit; if he stays until Saturday, he will be eligible for rehab being paid for (Now how is that for common sense? Now we are hoping dad DOESN’T get well so he has to stay in the hospital long enough so that insurance will pay for the services he needs!)

In between all of this, is the rest of my life.  Call from a school social worker to discuss a client I have.

Call from my client; I forgot her appointment; started crying because I really, really needed the money this time; she was great about it, but I felt awful

Sent 33 texts to try and get rid of my sabres tickets for last night because Frankie was already going with a friend; too exhausted to go but seats were $150… ended up going so they wouldn’t be wasted…

All said and done, I sat Thanksgiving morning and counted all the phone calls I had the day before, just for giggles. Wanna guess? 59!!!

No wonder I’m nutso…lol

But here is something nice. When I finally left the hospital last night, I was crying on the phone out of exhaustion and frustration, talking to my sister. The parking dude told me I didn’t have to pay the 7 bucks that I usually have to pay for parking. I told him thank you and I planned to cry every night so he would let me off the hook. He smiled at me.

 


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Good Grief!

My clients teach me more about life and human relationships than I ever teach them. It’s been a week with some very moving sessions. The first one was a woman who is confused and upset about loving and hating her former husband at the same time. And why miss someone who hurts you terribly? I saw myself in her. I was only with Jay four months and I am still regularly tortured by the same thoughts she has. I can’t believe how difficult it is to move forward and how deep the pain still is. This woman had ten years invested and had children with him. Trying to reassure her, I realized I am usually much too hard on myself. Loss is complicated and difficult, but it is what it is. No way around it, only through it.

Yesterday, I had a session with Natalie. Natalie is only in her early twenties, but she has one of the oldest souls I’ve ever met. She lives her life outside the box, yet has a simplicity about her that is soothing and refreshing. A couple of months ago, she found herself with an unexpected pregnancy. Talk about mixed emotions. She and her significant other did a tremendous job of managing the complexity of the excitement with the difficulties of an experience they weren’t quite prepared for.

They got through the first trimester only to have a frustrating week of sickness and illness that had no apparent explanation. And unfortunately, a team of doctors that you could make a case for being nothing short of negligent. This turned into one of the most difficult and traumatic miscarriages I have heard about.

Natalie and her partner took this new experience on with the same grace and maturity that people twice their age find hard to accomplish. She talked about trying to cope with this loss that seemed to be hanging in the air. Having had a miscarriage myself, I could understand. It is incredible that these tiny not-fully-formed lives completely capture our hearts and devastate us with their loss when we haven’t even laid eyes on them.

Yesterday she came in for session, and had just had access to the pathology report. Turns out she had an infection that is relatively rare which caused preterm labor. The baby was a perfectly formed boy.

Suddenly, her grief had a shape, a face, a gender. There was great comfort in knowing that he was healthy and perfect.

And yet… doesn’t that make it even more tragic? And maddening that earlier intervention from the medical system might have prevented this. She understands that maybe not, but maybe it would have.

Again, the bitter and sweet complexity of human emotion and connection. Such happiness and relief from knowing, mingling with gut wrenching grief.

At the end of session, I stood up and said, “Good grief, Natalie!” which I realized was a bit of a pun. Natalie said it was ironic that I said that because of being a grief counselor. Then it hit me. My God, Nat. There it is. The perfect description of it all. Good…Grief. I watched her face as she caught it too. It was one of those sacred therapeutic moments that don’t come all that often in a career.

I hugged her goodbye, but I couldn’t hold her tightly enough to let her know how incredibly grateful I am that she trusts me to share in her journey. What a privilege to share in someone’s pain and joy.

Thank you my dear Natalie. You are my teacher.


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The Real Talent

Some of you that know our family might remember when Frankie was 6 years old in kindergarten. It was his big year. He wrote a story called “The Kite and the Snowflake” and won third place in the Reading Rainbow contest out of 700 entries. (He clearly should have gotten first, of course!) It was an amazingly thoughtful and poignant story. The principal made it into an actual book and held a school-wide assembly for him to read it to the student body. He got invited to the Board of Education for the same. It put him on the map. I credit his teacher for discovering it, buried in the middle of a scribbled journal.

He is now 15 and I ask him to clean out his folders once every six weeks. He puts everything in the recycling bin and then I fish it out. I keep a few things here and there for his memory boxes. I caught this poem written on the back of a sheet of paper. I confirmed he actually wrote it and he even gave me permission to post it which surprised me. Anyway, I know I have a mother’s bias (obviously) but I think he is the real writer in the family. Let me know if you agree this is pretty great. It has the hallmarks of a teenager that make you chuckle, but overall I thinks he captures a deep understanding. The assignment was to write a poem from a Jewish perspective. (Thank God I never got assignments like that when I was in school!)

Where is my God?

My fellow Jews and I stand alone.

There’s nowhere to go or no place to call home.

My friends hidden behind ash.

Here I stand with no cash.

We are torn down by being beaten or blasted.

Maybe Hitler thinks all Jews should be trashed.

One thing that is not really cool?

All Jews are segregated from the great German schools.

Our God seems to be unreliable.

Therefore, us Jews are considered undesirable.

My depression is growing because my God isn’t near.

I can’t numb the pain because I can’t afford beer.

One thing is for sure, my God is not found.

Life is hard without Him around.

 

Yep, I’m a proud mama.

 


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Endings

If you want to read the precursor to this story, check out “Shut Out.” The end of the story is not a good one and I wish I could say it isn’t so.

One of the days that Ed had texted and asked me to visit him and his daughters asked me not to come, I reached out to someone at Roswell that I had met who worked with “family engagement.” While I wasn’t sure what that is exactly, I wondered if my situation would fit in. I forgot that I called him, but a few days later he got back to me.

I told him that I had decided not to go to the hospital, but I said I would be interested in knowing what his opinion on the situation would have been. He went around a few times, but actually called me back later and said that the bottom line is really about the patient’s wishes being respected. While we both understood that accepting death is difficult and some families just refuse to go there, it wasn’t about that. It was about Ed. He suggested that he talk directly to him and find out what his wishes were. If he indeed wanted me to visit, then perhaps the social work department could get involved to help the family shift their thinking about how best to support their father.

I cautioned him by reminding him that the family believes they are doing the right thing for him so this would be an extremely delicate situation. It would have to be handled ever so carefully. He agreed and said he would get back to me.

He didn’t. Instead, I got a scathing text from one of the daughters that was addressed to me, and copied to the other siblings. It spoke of how disappointed she was when a social worker approached her because her dad’s counselor and called to complain that his family was keeping her from seeing him. She told the worker that I was not his counselor, etc.. She also went on to talk about my creating nonsense at a time when they are focusing on his well-being.

I was stunned. And angry. I texted them all and said that it was not true and that I had their father’s well-being in mind at all times. I told them I would like to sit down and talk with them and straighten things out because it’s much too important to text about.

I never heard from any of them again. I texted. I called. I left messages. I texted and called Ed but never got responses. I didn’t know if his phone was being monitored or if his family had told them I lied to the hospital and they all hated me.

I thought and thought about how to let him know I cared. I have several cards he’s sent me over the last few years where he called me his best friend. I would dare say I might have been his only friend. This was horrible. I decided to send a card to the hospital.

Only he wasn’t there anymore. I started looking for him in various rehabs that we had talked about as possibilities for him to go to. I peppered the search in between the calls to him and his daughters.

This weekend I found out the truth. I found his obituary. He was gone. And his wake and funeral were over as well. I reached out again to the family to ask where he was buried. No response.

To say I was devastated doesn’t really describe it. It was such a complex ball of emotions. Of course there is the loss of a very, very dear friend. There was shock that this family despised me this much that they wouldn’t even let me know about the wake. I know in my heart I absolutely did not one tiny thing wrong to deserve their hatred. Not one. And now I’m also experiencing a great deal of anger. I’ve had boatloads of loss in my life and I absolutely did not need to have a loss that was the result of a bad ending.

And then there is the anger at myself. Because I have been so depressed lately, I chose not to go to the hospital because I just didn’t have the strength it would have taken to stand up to the family and honor his wishes. If I wasn’t so depressed, I would have taken my strong patient-advocate self. But instead, a wonderful man asked me to come and he died thinking I ignored him.

I have always said beginnings and endings are crucial in life. You can’t have one without the other either. I was thinking about how sometimes people behave badly and then at the end of their life, they make peace or say they are sorry. The ending changes everything. Maybe it shouldn’t, but there has been lots of forgiveness that happens at the end. And I say hurray for that.

I realized that I assumed the reverse is true. If the ending is bad, it negates any good that happens before that. Darren reminded me that is not the case. He said the months and years before this ending, I was a good friend to Ed, and he was a good friend to me. Good enough for him to call me his best friend. The ending was only a small space in comparison. When he was lonely and sad when his wife was in the nursing home and then eventually died, that is when I was there for him. I mattered to him.

Thank you, Darren. You are so right. The reverse is absolutely not true. While the ending was sad and unfair, his daughters can’t take away the years of our friendship. All of the walks, talks, hugs, fires, and pool parties meant something. I love you, my dear friend. I am just sorry I wasn’t able to tell you one more time.