Hospice & End of Life.

Another Family Member Passing:

Brigido Family 75th Birthday party for my uncle and aunt.

Georgianna sitting in the middle front - white jacket, pink outfit.

As we finish getting my mother's place all set to go, and seemingly getting on with life, I get a call saying that my mother's younger sister, Georgianna, passed away. It seemed to happen quickly. She has a twin brother and BOTH have been battling cancer for awhile - my aunt since this past April, my uncle for about 3 years. Tell me if this is not strange: my maternal grandfather died in 1992 (November), maternal grandmother in 2002 (October). Now both sisters in 2012 (July & October). Tia (aunt in Portuguese) died 3 months to the DAY from my mother. I told my uncle he should be good till 2022, maybe 2032.  

She was doing relatively OK at mom's wake and funeral. Tia was able to come a few times and visit with mom; when it was close to the end, I believe mom knew she was there even though she could not respond. I thank her and my cousins who drove her for being able to come knowing that it was probably better for her to be home resting from the chemo. Tia was always calling to see how things were and was always there to talk to me. It was hard for her to not be able to do much for mom. 

We had a good time at the party, which was after mom's passing, going through very old photos and papers that I found. I promised to send copies of them to her and my cousins, which I will do for my cousins. That was the last time I saw her. I spoke to Tia about 10 days before she died letting her know that I found an extra blanket for one of her granddaughters. My grandmother crocheted a lot of blankets at one point (one for each of her children and then 9 more for us grandchildren). Now Tia wanted one for one of hers. I inherited a few more from mom so I told Tia to have Caitlin call me, since she is going to school near me. I would meet her and pass it along. I was able to pass it along to Caitlin at Tia's funeral. I think she knows I was able to meet my obligation to her. 

Rest in Peace with the family.

The Settling Affairs Whirlwind:

I am hoping that this may help those who are thinking down the road about what to do when they need to take over their elderly parents final tasks. It is just another version of caring for parents. I probably should have done some of this before but that meant mom's medical condition was terminal. Although I already knew it, just couldn't face it. It doesn't hurt to look around your parent's home or finances and start taking notes.

Well, it has been about a week since mom passed. With the wake and funeral done, it was time to think about what places need to be contacted, accounts closed, services stopped: you get the idea. It is a good thing I was already handling most of her finances and she was open with a lot of things she was doing. She gave me copies of most of her finances and made sure I had the will and knew where certain pieces of information were in her house. I have account numbers handy and an idea of what needs to be taken care of. So one day, Frank & I sat down to make a list of 'things to do'. Until the list was written, I didn't realize how daunting this was going to be. The funeral home provides the certified death certificates, which saves us one thing to do. The following is the list we came up with (and I'm sure we've forgotten things):

Social Security (the funeral home sends them paperwork) but be ready for anything they need and ask about possible death benefit (see if we qualify); go to the DMV - cancel license and return car handicap sign; contact life insurance company; cancel TV/phone; go to City Hall and change her car tax information to us; change car insurance and home insurance over to us; change electric bill over to us; call security company (mom had the service where you wear a necklace and push the button for help); forward mail to us; notify bank; check with nursing home to see how Medicaid application is doing and do we need to pay for room/board (hospice does not pay for room/board) BEFORE seeing if mom is getting Medicaid (application was in process and had social worker assigned before her death); contact our CPA to see what I need to do for taxes and/or probate; contact attorney to make sure I have updated will and see what to do for probate; cancel her medical insurance (Blue Cross/Blue Shield); cancel newspaper; start talking to neighbors and real estate people about condo.

I hope to do most of this before I start cleaning out her place. Then I will contact local consignment/auction people to see if they want to buy some of the furniture, pictures, kitchen things, etc. We did this with some of the things in my parents' previous home and it worked out well.

My kids say they want to keep some of her things too; we'll head over there to tag whatever they like (within reason of space). I do hope they want a few things - I think that would be nice of them.

Interesting Facts About Hospice:

A great part of homecare is hospice care. We had this for my dad and we have had friends of the family have the same care for their loved ones. My hat is off to those who have chosen to do this sort of work - it cannot be easy by any stretch of the imagination but I have seen them treat patients and family members with care, concern, and love. They were right on target with dad - with his aliments, conditions, what will happen next, timing. All this information was shared with kindness, compassion, and in a way that we could understand. 
While at the rehab clinic, I saw a copy of a newsletter published for the employees of The Sun Healthcare Group and its family of companies. It is called 'The Current', April/May 2012. In it was a quiz, if you will, regarding 'Hospice Savvy'; it was checking your hospice IQ. Reading it was interesting and informative.

Did you know??

*The concept of hospice is an ancient one, dating from the Middle Ages when hospices were set up as places of rest for pilgrims and other travelers. 
*At the end of the 19th century, hospices specifically focused on caring for the terminally ill, first in Ireland and later in England.
*The benefit was authorized in 1982 under Part A of the Medicare program.
*The average hospice patient lives 29 days longer than patients who do not access the benefit.
*Hospice companies provided care for approximately 41.9 percent of all individuals who died in the U.S. during 2010.
*The average length of service in 2010 was 67.4 days.         

The care is wonderful, we could contact them 24/7 and they were a wealth of information. 
Although difficult to see happen, I know Dad, and those others who passed at home, were more comfortable. I think we were more comfortable having someone 'hold our hands' through those final days as well.

Again - Thank You to all those who have chosen this noble work.

Palliative Care: A Part of Hospice I Did Not Know About:

Mom's condition has been up and down: sometimes she eats, sometimes she doesn't; she'll take her meds one day and not the next; she is talked into getting out of bed by her therapists in the morning, then she'll be telling them where to go, how to get there and what to do when they get there the next time. She's weepy then laughing at who knows what. Mom still recognizes people but her conversations are not based in reality: she's seen, walked and gone shopping with her mom (passed 10 years ago), my dad is still around (gone 16 years) and she waits for him and wants to share her food with him; she talked to St. Peter the other day (not sure how that went - she said he was nice) and the best one -- she talked to St. Nick/St Nicholas/Santa who is planning a party for my grandfather!!! Of course, my grandfather has been gone for 20 years BUT I do know he would LOVE a party given by Santa (he was a big kid at heart). There is more but you get the picture.

She has also started to give the dialysis center staff a hard time - not wanting to get her treatment. They were able to get her twice to go through it but one time, no. She cries and yells at them. We all know her back pain, due to a bed sore and spinal stenosis, gives her a lot of problems. Today though she was able to tell them that they could do the treatment IF they could do it without a lot of pain; so I guess the needles are starting to take their toll. She is constantly in bed or laying on a recliner-like chair. Four toes are still discolored so she can't be on her feet long - in fact I helped her get out of bed and into a chair the other day and she has no strength in her legs to stand. Her main source of relief has been vicodin

Recently at her Care Plan meeting, the head nurse on the floor mentioned hospice. I replied that no one has told me there was a timeline in place for her. She said that hospice now does pain management for those who are having a hard time with their pain source and suggested 'palliative care'. This plan addresses the physical, emotional and spiritual needs of the patient. The primary goal is to improve pain relief and the quality of life. Palliative care specialists work within a multidisciplinary team to support the patient's needs and goals for treatment and care. This can also be done at her rehab/nursing home. While working with the patient, this care also provides support for the family. Someone from the chosen local agency will go in to evaluate the patient to see if and how they can help. 

For financial reasons, it is best to talk to the local agency to see how this care may impact you - the Medicare/Medicaid rules can change, so you need to know if it will affect your family finances (anything out-of-pocket). If your family member is in a nursing home, they can handle it for you -- I have already messed up the difference between what mom has now and how this will affect her plans. Also, in mom's case if we do this, the agency that ends up providing her care needs to keep her dialysis center in the loop. As a matter of fact, I talked to the social worker at the center, mentioning this idea and the agencies that were suggested to me by the nurse, and she concurred stating that she has worked with them and liked them. 

The local agencies are as follows and some are connected to other agencies in other states:   Beacon Hospice; Odyssey HealthCare; Home and Hospice Care. You need to check these out for yourself and chose, or not, what you think is best for your family. 

From Dialysis to Hospice - A Hard Decision to Make:

The other day I received another phone call from the Dialysis Center. For the third time, mom's fistula was clogged; the last time being one week prior.* At that point, I had told myself that if it got clogged again in a short time period, I would have to discuss options with them and her doctor. 

I did ask if they tried to talk to her about it (she has been very confused and not following conversations most times though once in awhile she seems alert). They said yes and she did not want to do it. They did say that this would continue to happen. So I said if she said again 'no' to the unclogging then so be it. Which she did. 

I talked to a few people - the dialysis people, her kidney doctor, our priest; we discussed her current medical condition. At the time, I decided to take one day off her dialysis schedule - 2 days now. My head was saying "time to stop all this" but my heart couldn't do it. She seemed so miserable all the time, tired; even when I visited at the dialysis clinic, she was not happy. 

In the meantime, we also had an appointment with the Wound Care Center at a local hospital to have her bed sore** checked (it was getting better, even to the point of mom being taken off of skilled nursing but then opened again). The doctor had me see what he was looking at and talking about. I didn't know whether to cry or to faint. The last time I saw it, it was about the size of a pencil eraser, nothing but an opening. Now it is the size of a quarter, 'meaty' and her broken tailbone had a couple of pieces floating there, extremely painful. 

The nurses say she is not eating or drinking much, she refuses her meds a lot. My prayers were that I would know what to do and when. Now my heart told me - time for hospice; time to let mom move on to no more pain. Weeks ago she was telling me about her conversations with my dad (died 16 years ago but apparently happy surrounded by angels and flowers), she spoke to St. Peter ("he's very nice"), and heard St. Nicholas was planning a party for my grandfather (gone 20 years). Our priest has seen her and talked to her when she was still fairly aware of things; they talked about heaven and said mom is OK with passing on, she's ready.

The next morning after I signed the hospice paperwork, I went to visit with 2 of my boys. She was awake, animated and trying to converse with us (her part of the conversation made no sense but she tried); she was laughing and trying to follow where they were walking in her room or see what Willie was watching on TV. But the thing that I was most aware of was that she seemed at peace, relaxed, constant smiling. I think I did OK. I have also been able to sleep better at night. Quite a few people had told me that I would know when the time was right to make the move to hospice - they were right.

Hospice is wonderful. My dad had it. The admitting nurse was great, very kind, ready to answer any question and examined her respectfully. She made the paperwork easy. The very next day I received calls from the Social Worker, Case Manager and Chaplin - all asking me to tell them about mom (what she liked that could make her more comfortable, even making a CD of her favorite music to listen to), asking what my family needs and reminding me to call them 24/7 if there are any concerns about ANYTHING including the nursing home care. They will check on her periodically and fill me in, as the nursing home does. In fact the nurses there are still asking me if I have any questions, have held my hand to let me know I did a good thing, have watched me cry. I have a high respect for all those working in this part of the medical field, they have big hearts and shoulders.

* When this happens, mom gets sent to another place to have doctors take care of it: they unclog and check for bloodflow in the arm. She has to be put under anesthesia and have dye injected. Then rescheduled for that dialysis appointment, so now we have 4 days of poking the arm.

** I found out that bed sores start from the inside out and get healed from the outside in. It is the constant rubbing of tissues on the inside with other body areas that start it. You heal it by creams and bandages (and debreeding) on the outside. Even when mom's seemed to be closing and healing, there was some discoloration around it which was tissue that had not healed and ruptured.

Passing on to a New Life:

Mom, Willie, me

A lot sooner than I thought, I received the call from the nursing home. Mom had passed early Monday morning. Everything seemed to move fast since entering the hospice program, taking her off dialysis just a week prior.

After the day where she was alert and trying to keep up with our conversation, laughing and trying to watch TV with Willie, she slipped into sleeping most of the day, or at least during the times we were there. During the next days, I took a few of her older friends to see her, my friends went, as well as my aunt and uncle (who have to be careful due to their chemo treatments). These visits were also 'quiet' with her sleeping but she seemed to try to open her eyes and was mumbling something. She did manage to smile occasionally (especially when bingo at Foxwoods was mentioned), raise her eyebrows or shrug her shoulders. The last day we saw her, she seemed a little more agitated in her sleep and had more saliva in her throat (which I was told they could give her medication for). The nurse told me that sometimes that means there is only a few days left. But it was the next day that the call came. Even hospice called and said they were so surprised that it happened so quick.

As we believe, and others have said, mom is in a better place. She is with dad and her parents, no pain, no discomfort. We know she's in heaven because she told me she had spoken to St. Peter a few weeks ago -- "he's nice". So we can assume she already had the thumbs up to get in. Hopefully she made it for the party St. Nicholas was planning for her father (another piece of information I was given a few weeks ago).

Now she can rest in peace and enjoy those who have gone on before.

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