When parents die

My mother died in Nov '10 & my father died in Dec '11. Their deaths were very different.

My mother had a major surgery in '09 & had complications that resulted in kidney failure. The last year of her life she was on dialysis every Mon, Wed & Fri. My mother did not take care of herself.... she was a smoker, which resulted in COPD. She even had to start using oxygen while at home, but she continued to smoke (she just made sure the O2 was off while smoking). She also did not eat very well... hot dogs, french fries, chips, etc. We tried to get her to eat healthier, but she wouldn't. My mother developed a terrible blood infection & had to go to the hospital. She was there for about 2 wks when we finally thought she was out of the woods. The last time I visited my mother at the hospital she was alert, joking, eating & seemed to be feeling a lot better. My oldest brother & sister talked to her on the phone that day & my other brother went to visit her after he got off of work..... that same night my mother passed away without any warning. Her body was worn out from fighting the infection.

Before my mother died, my father began having pain in his back/buttocks areas. He & his dr thought it was due to a pulled muscle, so the dr gave him pain pills. 9 months later in August the pain had gotten worse, so the dr took x-rays, and saw something on my father's lungs. My father was a smoker too (since the age of 11, when he would take tobacco pieces off the floor of the tobacco barn & roll them into a cigarette). A CAT scan revealed cancer that had metastasized to other parts of his body. From that day forward, my brother, sister or I stayed with him, cooking, cleaning & making sure he ate & took his medications. My father agreed to have radiology treatments for a spot on his spine... the spot that had been giving him such pain. The treatments helped for a short time. He began to lose weight, he didn't want to eat, had terrible constipation from his meds, had to have a foley, and could barely walk anymore. Home health care came in weekly to check on him, & helped in with bathing & shaving. But there finally came a point when he just could not take the pain anymore, & we were not able to help him. In November my father had to go to a hospice facility.

At first my family did not want to use hospice. We wanted to do it ourselves & thought our dad would be happier at home. But we were wrong. It was a wonderful place for my father. They were able to relieve the pain my father was having. The staff were all so caring & attentive. They answered all of our questions... even if we asked them over & over again. They made sure my father did not suffer while he was there. He even joked with the nurses & CNAs. My father was at the hospice facility for about 3 wks when his body finally gave out. Even though my father would have wanted to die on the same land that he was born, he knew that his family could no longer take care of him, & he was able to die peacefully. I would highly recommend to anyone sending a love one to hospice facility.

In the last 2 years I have had to go through 2 different types of deaths - one sudden & one drawn out for a few months. When it's time for me to die, I'm not sure which way I'd like to go. I think they both have advantages & disadvantages.... I guess I just need to be ready just in case it does happen.

Now that I've experienced death with my parents, hopefully I will have more compassion & understanding when I have to deal with it as a COTA.

Death and family

This week's blog is about death and I have my fair share of it these past weeks; my stepdaughter losing her infant daughter and I losing my uncle, a very close relative. Death unfortunately is apart of life and at some point in time one has to deal with it. Were they "good" deaths? I am not sure, maybe they were. One developed an infection after being born prematurely, and the other was sick but in treatment and optimistic. What constitutes a "good death"? Is it one without suffering, one that happpens before realizing any disabilities are present, or one that happens when there has been enough suffering and pain? Whether there is a good death or not, the one thing I want is to be remember for having a good life.

My uncle's death might have been considered good because he did not get any sicker or suffer lots of pain but the one thing that stands out for me this past week was the good life that he had. My uncle had found his soulmate, had three sons and was devoted to his friends and community. My uncle never met a stranger and if you ever met him you would not forget him. He had the most unbelievable way of being positive and encouraging that you wanted to be the best that he knew you could be. He touch so many lives and it was reflected by the standing room only at the two services held in his honor.

As I pause and cry alittle, I realize that I might be off topic but death to me right now is from the family's perspective and how I can use this experience to be of help to families of my patients.

A Good Death..Is There Such a Thing?

The one time our instructor gives us a topic to blog about it is about death...thanks Ms. G!! I really do not think about death much because it kind of makes me uncomfortable. I will say that I am more comfortable now with the topic than I use to be, but it still is not an easy topic to deal with for me. I have been fortunate to not have many people to pass away in my family. I still have my mother and all my grandparents. My great-grandmother passed away when I was in the 8th grade so I was very young (and like another blogger posted "self absorbed") and really did not grasp what was going on. I had a good relationship with my great grandma, but I know if she would have passed now as opposed to then it would affect me differently. Almost 2 yrs ago my grandfather's physician gave him 24 hrs to live...when I heard that I thought I was going to die with him! I literally fell out of my chair and just started crying uncontrollably. I am usually the one that "keeps it together" in the family and my mother is the cry baby (she knows I have given her this title), but I could not hold back all the emotions I was feeling. I was sad, mad, scared, anxious and confused all at one time and all in the matter of minutes!! So my incident with him is the only thing I have to go on regarding death. I like to image that my grandfather wishes he did some things different in his life; I know even at my age now I wish I would have done some things different. The main thing I think about now regarding myself and dying is my son. If something were to happen to me now I hope that my mother is around long enough to look after him until he matures (that might be well after he is 21 yrs old!!) and if something happens to me later in life I hope that I go in peace and all that I leave behind will be ok.

No Regrets

This week we have been given a topic to blog about. Death. I can't say that I am totally excited about this topic because it brings up some feelings that make me feel uncomfortable. I guess what I can say without doubt, is that I have some personal life experience to add to the discussion. I watched my father in the dying process for about 4 months. I was in my mid 20's and to say the least, self absorbed. I avoided the situation as best I could and did not invest emotionally. The problem with this is that these feelings of regret and unfinished business follow me. I would urge anyone facing a love ones death to deal with any positive or negative feeling they have with the person. Say everything you have to say to them or want to share with them in the time you have together, even if you think it will upset them. Having regrets after one passes is difficult and it makes the grieving process longer and harder. I believe this is true with our future clients as well. We all dye and it is more than probable that in our careers as OTA's we will experience death with some of our clients. I hope to help the families as well as the person going through the experience. In researching for this blog, I found a great resource for family members. Some people may not know the signs of death and understanding and recognizing them may help in the process. The article talks about symptoms of the final stage of life including; coolness, sleeping, disorientation, incontinence, restlessness, urine decrease and food and fluid decrease. The article also mentions some emotional and spiritual signs and responses including withdrawal, vision-like experiences, restlessness, and unusual communications. I saw some of these for myself first hand. My father was in the hospital the last few days of his life. I was not there the whole time, but the time I was there he was sleeping and seemed to have conversations in his sleep. Similar to a dream, but there was something different about them. It seemed as if he was preparing himself to walk over to the other side. He was in conflict for a day or two and then seemed to let go. I often wonder if I had given him permission to let go, would he have let go sooner? Now that I am older and somewhat wiser I hope I can be of support to my clients and family members when faced in this situation. Death can be a sad time, but it can also be a time to finish what we have started here on earth and know that our loved ones will be waiting or us, because there will come a time for us to finish here on earth as well. Saying thank-you and I love you is not always easy, even in death. Giving family members support to do this can be very valuable as therapist. Being the one to tell a client thank-you or I love you might be the only thing we can do for them because there may not be anyone else. I am ready for that challenge and just wish I didn't have the regrets with my own father's passing.

Role as a Nurse

My mom recently took a PRN position with Alamance County Hospice Home. She currently works in critical care as a nurse in the hospital and is met with challenging patients who die everyday. When I asked her how could she work at hospice with all of the people there, knowing that they are going to die she responded that at work the people die and there is nothing that they can do. At hospice you go in knowing that they are going to die and your job is to keep them as comfortable as possible. Everyone dies. I guess it is better off knowing than not knowing.

This led me into the conversation about how she talks to patients about dying and how she talks to them about hospice. She told me that when she talks to someone about dying in the hospital that she doesn't dance around the subject and give them false hope. She asks them if they understand that they have exhausted all medical procedures and medicines and that there is nothing left that they can do for them. Sometimes she has to "pull the cord" on breathing machines if the patients want it . She tells them that they will quit breathing but that they have medicine so that they will not be gasping for air, just be comfortable and go without suffering. This is something that I would find extremely hard to do. It's kind of like killing someone. But not, just letting them go and not have them suffer.

When she talks to someone about going to hospice, she talks about dying again and that there is nothing left to be done, and then talks about the services that hospice offers. She tells them that without treatment they will die soon and hospice can make them comfortable, they have round the clock nurses that can take care of them and it can relieve their family from having to take care of them.

She told me that the most problems she sees in someone who is getting ready to die is that they are worried about their families and if they will be ok, financially and emotionally. Most of the patients need to hear their family say that it's ok to go and that they will be ok before they pass on. I can see this being a problem - not knowing if your kids or grand kids will be ok or if your wife will have enough money without you- major stress.

These are all issues that I will struggle with talking to patients about. I guess it takes experience, but I don't know if I'll ever get used to talking to someone about dying or their life ending. Hopefully I can gain knowledge on how to do this and get my frame of mind in a place were I can deal with death more easily.

I have attached an article on how to deal with death, something I find useful.

Hospice+grief+letting go

This week I am supposed to blog about "a good death." As I'm told this, I'm thinking, "seriously? Could there be a more depressing topic? *sarcasm*"So what does a good death mean to me? I think that a good death is when you have come to terms about what you've done or haven't done, about the life you lived and what may or may not await you. Ideally when it is my time I would like to have forgiven those who I still hold grudges against and forgive myself for choices that I've made. I want to feel ready. I want B to be all grown up and not need me anymore. I want to know that she'll be ok when I'm gone.

I didn't really know what hospice was before this assignment. We talked about myths of hospice care last week in class. I thought a lot of those "myths" were true. After our discussion I decided to look a little deaper. Hospicenet.org has a wealth of information for patients, children and caregivers. It has information on how to handle grief and how to talk to children about death. Here is a portion of the hospice concept that really stuck out to me,

"Hospice affirms life and regards dying as a normal process. Hospice neither hastens nor postpones death. Hospice provides personalized services and a caring community so that patients and families can attain the necessary preparation for a death that is satisfactory to them.

Those involved in the process of dying have a variety of physical, spiritual, emotional and social needs. The nature of dying is so unique that the goal of the hospice team is to be sensitive and responsive to the special requirements of each individual and family."

Hospice is so much more than I thought that it was. I think that someone choose hospice either b/c they know that their is no treatment left or that they don't want to fight the disease at all or anymore. I think people who choose hospice are at peace with death.

I think that the best activity for someone who is dying is to make a scrapbook of their achievements or what they want their legacy to be. What do they want people to remember about them? Or maybe even a video of them telling their life story or showing off their talents. Something concrete that can be left behind, something more than memories.

Someone once told me that you never get over the grief of losing someone, you learn to deal with it. About 5-years-ago my mom's friend died. Her daughter was in 5th grade and her son was in 2nd grade. About the time she was given a year to live she began to write letters. She wrote them a letter everyday addressing any possible issue that may come up. She talked to her daughter about getting her period and how to buy a bra and how to apply make-up. She wrote to both of them about how it was ok for their dad to find someone new and it was ok for them to like her. She told them that it was ok for them to be mad at her for dieing. I think that this is a great way to handle grief on both ends.

When do you push someone to do more and when do you "let go?" I was thinking about this out on FW last week. My pt. is almost 94-years-old. He has been refusing to transfer and would rather sleep than do anything else. I understand the justification for services but at the same time, he is really old. Can someone at his age still be independent? Certainly. Could he still live another 5 years? Sure. My thoughts are just that if he doesn't want therapy, then who am I to make him? Also, there was a pt. that I saw out on FW who was a member of one of my peer's churches. She was a tough pt. What I heard from the OT and the CNA was that she refused to eat, threw her food at people, pulled hair, swatted her hands around and bit. The CNAs would give her meds. to calm her which ended up knocking her out so when I saw her she was pretty much asleep for the whole session. Well, I saw her on a Tuesday, she died a few days later. I hate that she spent her last days in a place that she hated with people trying to get her to do things that she didn't want to do. I think that is another reason why I struggle in this FW. It seems to me like it is time to "let go" when the pt. decides that it is time to let go.

Cheesecake on the Way Out!

It was a normal day at the senior center for 87 year old L, she attended her normal Pump and Tone exercise class, relaxed in the library while finishing her daily newspaper crossword puzzle, played bingo, and even ate a delicious lunch with cheesecake as dessert at the Meals on Wheels nutrition site. With in 10 minutes of her last bite of cheesecake she had a pulmonary embolism and passed away on the way in the ambulance on the way to the hospital. Now that is how I want to go out! Pumpin iron with friends and eating cheesecake. She definitely left this earth with her boots strapped on.

This was my first experience of the death of an elder who I called a friend. Interestingly enough, I saw death differently when it wasn’t a family member. I was really present with my emotions and I remember it spurring on so many thoughts about death…How I want to die, how I don’t want to die, she was here one minute…and gone the other, transition from life to death (kinda peaceful, yet creepy), funerals, wills, grieving loved ones. This was 3 years ago and I still don’t have my mind wrapped around it all (and probably won’t ever fully understand until I go through it myself). But all these thoughts and ponderings will hopefully help with understanding some of our patients who happen to be at the end stage of life.

Each patient we come across as OTAs will have different needs at the end stage of life. The challenge is to figure out where they stand with death and help them make their short days meaningful and full of life. As OTA’s we will face a lot of patients either grieving a loved ones lost life, or grieving their own life that is coming to and end. We are to be resources of knowledge, compassion, empathy, and another person they can count on to make their wishes become reality. Sometimes family and friends are reluctant to face up to the fact that the person is dying and it might be beneficial for them to seek outside support.

We might watch our patients withdrawal from life, but I don’t necessarily think this is a bad thing. Sometimes people need to take time to reminisce in the quiet, ponder their accomplishments, their shortcomings, their relationships, their faith…etc. I think it is healthy to bunker down for a while and realize the feelings that might be deeper down inside.

I am halfway through the book Tuesday with Morrie and what a good book! He really has a grab the bull by the horns attitude on dying. He refuses to wallow away until his final inevitable breath. I want to share a beautiful part of the book that we can all take a mental note of…

I asked Morrie if he felt sorry for himself. “Sometimes, in the morning,” he said. “That’s when I mourn. I feel my around my body, I move my fingers and my hands—whatever I can still move—and I mourn what I’ve lost. I mourn the slow, insidious way in which I’m dying. But then I stop mourning.” … “I give myself a good cry if I need it. But then I concentrate on all the good things still in my life…I don’t allow myself any more self-pity than that. A little each morning, a few tears, and that’s all.” How useful would it be to put a daily limit on self-pity. Just a few tears, then on with the day. pp 56-57

I know Morrie is an exceptional case and not everyone will be able to reach this point of peach and clarity before they pass on…but I think as OTAs, we can play a part in helping someone get to that point. We have an important role in their comfort and support. And hopefully we can see some of the leave this earth sweatin to the oldies and eating cheesecake!