Mama Died, Dad's Dementia + A Grandchild

Mama's Celebration of Life Memorial Luncheon

: mamasdying; March 22nd, 2010

Mama's Celebration of Life Memorial Luncheon

Somehow, I thought things would be much easier after Mama's passing. I was very upset about the immediate family's lack of sympathy for my father's loss. Mama was his spouse and best friend for 50 years.

The weekend immediately following the cremation, we held a Celebration of Life luncheon instead the regular memorial. We waited so Mama's urn would be present and so family could join us for the memorial farewell. I sent out invitation memorial cards and called everyone. Over the week, I received about 10 RSVPs for about 25 people. But as the weekend of the luncheon approached, people began to cancel.

The day of the Memorial Celebration was such a sad day. We invited all of the immediate family and local friends from Nevada to the Celebration Brunch for Mama, and hardly anyone showed up. I worked so hard cleaning the whole house and cooking and preparing food. About 25 people were suppose to be here, and one by one they called and cancelled out. My father worked so hard setting up the yard tables and chairs, and manicuring the lawn to perfection. He spent hours on it two days in a row, just so it would look pretty when every one came. I planned the brunch for one week after her death so everyone could be over the crying part and ready to share some smiling memories of Mama, but maybe I waited too long. I also waited that amount time so I could have her cremated remains back, so she could be here, too, and because my dad requested the short delay as well, so he had time to do his heavy grieving before meeting with everyone.

This was a really hard two weeks following mama's death. I feel like my family really let us down. Even my oldest son cancelled, saying he couldn't drive so far with the kids (60 miles), and my daughter didn't even call. At least my youngest was here. He's 18, and he came a day early to help me set up and do the food. And my Uncle family came with his three adult kids and their spouses. Other than that, it was just us. Plus, my Uncle's family ate just before they came, and didn't have even a bite while they were here. It's just the three of us, so we have tons of leftover food to eat on for the next few days, which is a sick reminder of how no one really cared about my mother's passing.

My mother wasn't very well liked. She was a very spoiled and self-centered over the years. But in her last two to three years, she really changed. She realized that family was everything and she needed to be more loving and open with us. She spent a lot of time with Uncle Walter and talked quite a bit to family in Illinois. She opened up to me and told me stories about her childhood that made me understand why she was so hateful for so many years. It saddens me so much to know, no one wanted to say farewell to her. I hope my father doesn't think it will be like that when he passes. He is loved by every one. But, now, I'm wondering whether I should bother with food at the house after he passes. I'm so sad over this.

Tags: celebration of life, memorial lunch, memorial service, no one cares

Suicide, Assisted Suicide and other Death Requests

: mamasdying; March 21st, 2010

A Dying Parent or Child's Request for Quickened Death

My mother, laid in her bed gasping her last breaths, totally unaware that we were there unless we try to turn her or keep her body from bedsores. When we turned her once a day, on each of her last few days, she cried out like she is in such pain and then cried in her unaware state for several minutes. I came to a point where I no longer wanted to turn her or cause her any pain or suffering at all, so the turning ended two days before she died. She asked me to help her die several weeks ago. I refused. I wasn't ready to let her go. I felt she had more time - more quality time to share. She begged me and I turned her down. Now, I regret it. I was weak, and I still am. I was unable to comply with her last wish. I was selfish and wanted more time with her. Plus I had preconceived thoughts about suicide, and felt she was being selfish in wanting it. I was so wrong. I know that now. Instead of complying with her wishes, I gave her pain medications and wondered if they are really soothing her or whether she is just unable to communicate to me that it still hurts. I'm such a coward. I look back just a few days and wish we could have given her the medications that would have ended her life while she was still coherent and with us. It would have given her the moments she needed to tell us whatever was on her mind and to let us tell her how much we loved her. She could have prepared and felt in control of her ending. Her decline of health happened so very fast. Monday she was sitting beside me on her chair talking about Daddy and how he was handling all this, and literally, the very next day she was bedridden and unable to communicate. This happened just three days prior to her death, and those last three days she laid in her bed with her breaths becoming shallower, her legs drawing up into fetal position, unable to move by herself (cannot even straighten her legs out), unable to talk except to moan, and refusing all food or water. Thankfully, we have Home Hospice Careworkers with us. They made sure she has strong pain medications and helped us with her personal needs, and explained to us the upcoming process of slowly dying. I hate it - the slow dying. It's not dignified or easier or better in any way. There is no point at all in having the family be around and with you when you are in your final days if those days are painful for the dying member and the dying person is unaware of their surroundings. There is no purpose in watching someone lie in a bed and breath hard raspy breaths for days on end just waiting for them to finally die. I promised Mama and Daddy there would be no nursing homes or hospitals for them to die in. I promised they could die at home. I promised caregiving until they died, and I'm trained to give it. I provided caregiving for a paraplegic for three years, and I can say, caring for a dying family member is nothing like that. It's heartbreaking, hard work, sleepless work, emotional tolling work ... well, you get it. It's very different than caring for someone who is alive and will continue to live. I made my promises and I will keep them, but no one should have to watch a family member die so slowly and painfully. Even though I was a selfish coward who couldn't comply with my mother's wishes, I now totally support the concept of suicide, assisted suicide, and any other method to allow some one to choose how they die. If we choose how we live, we should also be able to choose how we die without state or any other interference. I made the wrong decision for my mother, but I hope I'll be brave enough to help make the right decision when my father's time comes.

Tags: assisted suicide, death requests, death wishes, last request, pain, suicide

Immediate or Simple Cremation Cost in So. Nevada - March 2010

: mamasdying; March 14th, 2010

Immediate or Simple Cremation Cost in So. Nevada

I am sharing the pricing given to me for Immediate Cremation (or Simple Cremation) here in Las Vegas, Nevada, as of March 2010, from one of the Funeral Homes.

The total package price was $1410.00 which included five $20 Death Certificates.

Here’s the breakdown:

Funeral Director and Staff Services .................................................... $155.00
(If this amount was only for the twenty minutes it took to do
the paperwork, then it seems a little high.)
Care and Preparation of Remains – Refrigeration ......................... $ 375.00
(I didn't see the need for this item. It's a cremation, supposedly
immediate. Seems rather expensive for use of even a day or two.)
Transportation of remains to funeral home (about 17.5 miles) ..... $ 375.00
(If this amount includes removing the body from the home, and then
transporting it to the mortuary which is 17 miles from our home,
then it seems a little high, too.)
Crematory Services ................................................................................. $235.00
(Seems fairly reasonable for firing up the furnace, moving the body,
collecting the ashes, etc.)
Merchandise – Alternative Container, Cardboard .............................. $145.00
(Wow! That's a lot for a plastic box.)
Urn – Plastic Bag ....................................................................................... $ 25.00
(If what I read is true, and this bag is extra heavy for transferring
contents to urns, then I guess it's fair. But if it's just a freezer
quality ziplock, then it's a bit high.)
Total ........................................................................................................... $1310.00
Plus Certified Death Certificates (5 @ $20 each) ............................... $100.00
(The $20 per certified page seems to be the going rate for a page of
anything certified in Nevada.)

Tags: cremation, funeral costs, nevada

Mama's preneed cremation package

: mamasdying; March 13th, 2010

Preneed vs. Last Minute Shopping-Comparing
My Experience with Mama

I’ve read a lot of discussions regarding Preneed versus At-time Purchase. My mother passed away last week. Approximately 10 years ago, I purchased a Preneed package for both of my parents. My mother chose “Simple Cremation” and my father chose a regular funeral with burial at the Veteran’s Cemetery. My father was known in the community so I added rental of one of their large rooms for the after-funeral gathering of family and friends.

The reason I chose Preneed arrangements was because I was sure I would not be able to function well enough at the time of their death to make proper arrangements. I felt prior arrangements would allow it to be taken care of for me by someone else. I now know that is not necessarily true. At time of death, I was still inundated with many decisions and a lot of discussion about details and such. So choosing Preneed did not alleviate the one thing I wanted taken care of – the bother while grieving.

After reading many negatives about Preneed purchases, I was more than nervous about both purchases. A prior experience of burying my father’s housekeeper gave me insights into the pricing and bargaining of such things. The housekeeper was a terrible, crabby old woman whom my father had promised a burial near her own father. At that time, over ten years ago, I was working as a reporter and had just finished a series about funeral costs, so I had a good idea about pricing on many items that could be purchased for one’s self like caskets (which some people made into coffee tables until used), or cremations where people were placed in shotgun shells for after-life hunting. My father is a very honest man and wanted to honor his promise to the housekeeper, while I am a very frugal person who does not believe in wasting a great deal of money on a funeral. I went prepared with cash in hand, $2200. Our first quote for a straight burial, casket, eternal maintenance and plot with no service or extras was $10,000. I asked the casket price. I was told $2000 for the simplest. I told him, I had no feelings for the woman at all and was burying her as a simply courtesy because her family would not, so $10,000 total was not even feasible. I suggested a wood box or even cardboard box would suffice, plus we had no need for upkeep or maintenance on the site because we had no plans to visit afterwards. I’m sure the salesperson thought I was ghoul. We dickered every option and got down to the final promise, my father told the housekeeper he would get her a plot by her father. The salesman quoted $2500 for the plot. I pulled out my cash and laid the hundred dollar bills across the desk and said, “I have $2200 cash, total, tax and everything, can you do it for that? If not, we’ll go to Forest Lawn down the street where the plots are only $800. As far as I’m concerned, she’s dead and won’t know the difference.” The salesman explained that was way too little for what I was requesting. I gathered the money up and started to leave, when he said, “Wait, I’ll ask the director.” A few minutes later, he was back and accepted my payment as total. We signed the papers and paid. Several days later, my father called to check on the arrangements and they tried to convince him that what he wanted was a cremation. I called them back and explained that what they wanted was to do as the contract stated or become the center of my next piece in my funeral series. Everything then went as planned and paid. I received a $10,000 simple burial with casket and plot for $2200. I also learned there was a lot of leeway in the pricing of funerals.

I mention this experience first because I could not imagine the horror of doing this same negotiating in regards to my mother and father while I was grieving. So I talked to both parents about what they expected for a funeral and went shopping for Preneed Packages for both.

Both Preneed Packages were purchased and completely paid for several years ago. I was very leery of the purchases after continued reading about problems with Preneed Packages (see www.funerals.org). Recently, I went to a local Funeral Home, where the purchases were made to update my father’s package with included the works: body transport, embalming, service, viewing, programs and cards, burial clothing, casket, after service gathering room, procession to cemetery, etc. It supposedly covers everything except opening and closing the grave at the Veteran’s Cemetery ($250) and headstone. At the time of purchase, my father had quite a few political friends who would want to come and pay respects. The friends have predeceased him, so some of the extras were no longer needed like a gathering room and procession, plus I decided to do the programs myself and provide his western wear as burial clothing. We paid a total of $4000 for my father’s Preneed Package of which $1500 was the gathering room rental. When I spoke with the current saleswoman, I found her to be cold and acting like we were wasting her time and being cheap with the changes we were looking into. She gave us their new package prices showing a “Simple Burial” at $7,500 and the package we purchased currently at over $15,000. Plus, we were told we would be unable to receive a full refund as there was a $2200 fee for services they provided so far. Needless to say, we kept the package we had as it was stated and I left with a bad taste in my mouth.

My mother passed away last Friday. Her passing was after a long illness under Home Hospice Care. I provided that care with the assistance of her insurance, and she died peacefully at home. I was very worried about the Preneed arrangements and whether I would have to endure an “upsell” while grieving. I have to say, I was pleasantly surprised by some of the results and had reservations regarding only a small part of it. Here was my experience:

Since my mother died as part of Home Hospice Care, they make sure there is no police or coroner called to the home, which was a great relief. Once my mother was pronounced dead, the Hospice Care contacted the funeral home and they arrived in a plain, white van with their name and address information on the side. The only complaint I would issue is the way they removed my mother from the home. I have worked as a nurse in the cancer wards so I have experience with the dead and dying, and some experience with body removals and after death handing. I made my father step into another room while my mother’s removal was made, and I’m glad I did. Two funeral home workers were sent for the body. They brought in a gurney but my parents have a very old home and it could not make the corner into the bedroom. This necessitated carrying the body from the bedroom to the hallway. My mother weighed about 125 pounds. Watching the workers labor while carrying her, and then what appeared to me as roughly tossing her on the gurney, then straightening her legs to place in plastic wrap, was quite disturbing to me. I could only imagine what it would be like if my father witnessed it. Other than that, the workers were very professional. The gurney was covered with a white plastic bag, open on top. My mother was placed on the bag, which was then wrapped around her from both sides, and then her entire body with bag was covered by a colored cloth drape. The rest of the process from the house to the van was simple yet elegantly handled. I was called later that day to schedule the appointment for the paperwork at the funeral home, per their request.

I don’t know why I thought there would be no paperwork. It was not a logically premise on my part. But I was surprised, because in my heart, I wanted Preneed to mean no work on my part at this time. I dreaded the appointment the very next day, but stepped up and dragged my husband with me so my father would not have to be part of it. Another thing I was surprised by, I paid for the Preneed Packages, and yet I was told my father would have to sign the paperwork for my mother’s burial because he was the spouse. Part of purchasing these Preneed Packages was to prevent my parents from having to deal with it. I told the funeral representative that I had my mother and father’s power-of-attorney and his presence for arrangements was “NOT” going to happen so how would they like to deal with it. I was told my mother’s power-of-attorney obviously had ended with her passing, but my father’s would be fine. Thankfully, I obtained both the power-of-attorneys and kept them renewed every five years.

As for my mother’s Preneed Simple Cremation, we arrived at the Funeral Home to sign papers. I brought the paid contract, power-of-attorney, $100 for death certificates, and my mother’s obituary which was written according to her wishes. I had already ordered my mother’s urn and some memorial jewelry online because I feared there would be an awful mark up on urns at the funeral home. I was ready for the “upsell.” As soon as the representative sat down with a thick pricing packet in his hand, I braced for the fight. But the fight didn’t happen. I was so surprised (and relieved). He looked over my contract, asked me if we would like to look at their urns, and began filling out the paperwork. I told him my mother’s urn was already purchased. He told me we were in good hands with the Preneed Package. Two sheets of paperwork were filled out, I signed both, he asked how many death certificates at $20 each would I need, I said five, and he went off to make copies of the signed papers. The whole thing took about 20 minutes from start to finish. He was very compassionate as well as consoling. There was no upsell at all. He simply gave me copies of the pricing and said if I needed anything else to let them know. He took the obituary and explained that he would fax it in for us, but we should know that obituaries are no longer free and the newspaper would call us for a credit card payment. As he completed his part and left, another woman entered and offered her services as a bereavement counselor (at no charge) should we need it. I was amazed, pleased and felt no pressure whatsoever. I would certainly recommend them.

One thing I found just a touch tacky, but others may not, was a comparison sheet showing what we saved by making Preneed arrangements. Before I tell you that pricing, let me say that we purchased a “Simple Cremation” for my step-father about ten years ago, and it cost $600. My mother pre-paid $327 for hers. The papers we signed showed the same service for “Simple Cremation” that cost my mother $327 ten years ago would have cost $1450 today. I must say, I am quite pleased that we preplanned. Honestly, $1400 would have been a burden.

I learned a lot this week about funerals and packages. I learned there will be work and negotiations and other decisions to make regardless of the Preneed arrangements. I learned that a standard obituary of less than 300 words cost $300 in our local paper (ouch!). I think I’ll be better prepared when my father passes. I’m still worried about my father’s package though. There is a big difference between a simple cremation and a full burial package. I can’t help wondering whether my father’s burial will be as simple and relieving, or whether I will endure a fight over receiving the full benefits of the package rather than a scaled down version. But for today, Kudos to the Funeral Home for making this experience so easy for me and for fulfilling their obligations as stated in the contract without pressure or “upsell.”

Tags: funeral home, preneed cremation, simple cremation, urn

Mama's Gone

: mamasdying; March 12th, 2010

Mama's Gone

Mama passed away last week. It was hard to write anything for a while. I went in to check on her several times during her last night. She never woke up. She laid in one position all night making hard little gasps for air. I checked her at 3am and she was still breathing, and again at 5am, but then she had stopped. I knew she was dead even though she felt warm to touch. I must have entered only minutes after she passed away. I looked for my father, but he had gone out for breakfast. When he goes out in the mornings, sometimes he's gone until 10 or 11am.

I called hospice care for a death confirmation and explained that I didn't want mother moved until my father had a last chance to see her and be with her. The hospice care worker arrived at 7am and pronounced mama dead. At 8am, my husband and I went to find my father. Surprisingly, my mother's body was still warm to the touch. I went in and stroked her forehead several times during these hours, and washed her face where she had drooled some medicine on her cheek.

We looked for my father at the two locations he frequents, but he was not at either. Then we went home and discovered he had just arrived there ahead of us. I told father that we wanted to find him and let him know mama passed away during the morning. He did not want to believe us. Father said, she's not dead sis, I just checked on her and she still feels warm. I had to explain to him that people can feel warm for quite a while when they die at home instead in the cold environment of the hospital. The second hospice worker arrived shortly after that.

We made the calls to the funeral home for pick up and the doctor for the death certificate. The funeral home workers arrived for pick up at 10am. In the meantime, the hospice worker and I bathed mama, removed the diaper she had on and cleaned her up, put a fresh protection sheet over the bedding, and laid her body out nice on it. The hospice worker said she could handle this all alone, if I preferred, but I told her it was my mother and I wanted to help. These actions were actually comforting to some degree. The pick up of mama's remains was rather quick. The funeral worker gave me his card and said we would need to come to the funeral home the next day and sign papers for the arrangements.

I thought emotions would be harder, but there was a sense of relief throughout the house, which made me feel guilty. I tried to stay busy. I had to make calls to family, gather pre-need paperwork, clean the room mama stayed in, and start packaging things that were no longer needed. We called the Home Care providers to pick up the hospital bed, oxygen machine and tanks, and wheelchair. They said they would be by that day. They didn't arrive until 9pm that night which was ridiculous. We locked up and went to bed at 8pm because the day was so emotional and depressing. I had to get up, let the man in to collect the items, and sign papers. It took quite a while because the worker was alone and had to disassemble the bed and move everything by himself. We finally went back to bed at 11pm. Tomorrow I have to go to the funeral home and deal with the arrangements.

Tags: dead, funeral home, hospice care

Continuing to decline

: mamasdying; March 4th, 2010

March 4, 2010

The Hospice Home Nurses came and evaluated Mama. They say she has about one to three weeks left. I spent quite a bit of time with her yesterday. We needed to move her room around and empty out everything except the bed because the room is so small. We needed to be able to walk fully around the bed so we pull her up in the bed when she slides down, and roll her from side to side. Moving Mama is a very difficult process. It takes both me and my husband to do it (bless him), and that's still with difficulty. Each day now, we have to pull her up as far as we can in the bed, and then roll her completely from on one side to her other side, and then on to her back, varying it from each day to prevent bedsores. Plus Mama cries the whole time we are doing it like it's just so painful it's killing her. I cry all the way through it.

Mama is barely able to talk now. I know she wants to tell me things, talk about her comfort or discomfort, ask for water, etc., but she is unable to do so. The only time she says anything very clearly is when she cries out when we move her. Any movement at all seems so painful for her. She shakes her a head a little bit for yes or no, but then she barely moves it and sometimes you cannot even understand that. I give her drinks of water off and on all day and try to feed her a little pudding. I don't want to think she might be suffering at all from thirst or hunger, even though the hospice people tell me she is not. But she is at the point where even a couple bites of pudding is hard because she does not swallow well. And she is barely able to suck fluid through a straw. She only takes a little sip after quite a struggle and then stops. We could put her IVs and a feeding tube, but Mama asked me not to do that before she became less coherent. Mama said the IVs hurt her arms, and the hospice people tell me a feeding tube and / or catheter can become infected quickly and cause Mama more pain.

So, I get up each morning now and we roll Mama over, change her if she's wet, change her bedsore bandage, pull her up in the bed, get her drink of water and try to give her a few bites of pudding or jello, and then I give her liquid morphine for the pain and she goes back to sleep. Then we go through the whole process again at noon, and again in the evening. I can tell she is frustrated because she cannot communicate. Dad spends a lot of time standing in the doorway, watching, but not participating. He leaves all the care to me. I don't think he can handle it even a little bit.

At night, I have a baby monitor hooked up so I can hear her. We've had the monitor ever since she came home from the hospital for the headache. It's a very expensive monitor and I can even hear her breathing. That's what I focus on at night - her breathing. It has become deeper and a little raspy. I sleep so lightly at night, listening for her to moan or call out. She doesn't call out anymore at all, but she does moan sometimes like she's in pain. When that happens, I go in and call her name. If she responds, I give her more pain medication. If she doesn't respond, I just let her continue to sleep. I get up about ten times a night to check on her.

This last downhill slide came on so quickly that it totally surprised me. One day she was sitting in her chair talking to me and I was taking her to the bathroom and bathing her, and the next day she was completely bed ridden and unable to communicate anymore. So quick, such a shock. I cannot believe we took her out for a short trip for pizza just three weeks ago, on a day she was doing a bit better. It seemed like she would rally and be okay for a while. The last bit of time sure fools you. Now, I'm glad I had my brothers visit before it was to this point.

Tags: loss of a parent, mama's dying, mother dying

Final Days - Mama's Dying

: mamasdying; March 3rd, 2010

I just sent out the following to my brothers and out of town family. Mama is going downhill fast. I don't expect her to make it more than a couple days.

To Family Near and Far:

For the past couple days Mama has been going downhill. At noon on Monday, the aid gave Mama a shower and I put her back to bed instead of letting her stay seated in the recliner. Mama was no longer able to stand and support any of her own weight. She has not left her bed since then. I've spent time turning her and cleaning her bedsore, which finally appears to be healing, and giving her pain medications. She has completely stopped eating and drinking fluids. I'm attaching the hospice care sheet that describes "letting go" and her last days so you will understand the process. I will be with her and comforting her through it, and I'm going to tell Mama tonight that it is okay to "let go." Dad's not ready for this. He seems to know it's coming but he is not prepared for it, and I'm not sure if he'll be able to be part of the process of sitting by her side until she dies. Yesterday, he asked to me to help her hang on longer and get better. I explained softly to him that I had done all I could do, and Mama wasn't going to get better this time. It breaks my heart. I know he went in her room this morning about 3am and sat with her for a short few minutes, then left crying. He knows the end is near. I think reading the following will help some of you be more accepting of the impending time left with Mama, and the end of that time. Please take time to read it, you may find it comforting. I will contact everyone as soon as it has ended. If any of you want to be called and placed on speaker phone during her last moments let me know. I can't promise we can plan it that closely, or that things will be smooth enough that I can include you in such a way, but if you want it, I will certainly try. This could happen in the next week or so, or even sooner.

I will be handling all of Mama's arrangements. We have a prepaid cremation through the Funeral Home. The Hospice Home Care people will be with us at the end, and we will not have to call the police, coroner or anyone else because her doctor has already indicated this is a natural death. The Hospice Home Care provides a discreet white van, no lights or sirens, for transporting Mama to the funeral home. We may keep her here for a day just to let Dad say good-bye, depending on how he is coping with it. Please read the following:

The Dying Process

When a person enters the final steps of the dying process, two different dynamics are at work which closely inter-related and inter-dependent. Therefore, as you seek to prepare yourself as this event approaches, the members of your Hospice care team want you to know what to expect and how to respond in ways that will help your loved one accomplish this transition with support, understanding and ease. This is the great gift of love you have to offer your loved one as this moment approaches.

The Two Dynamics

On the physical plane the body begins the final process of shutting down, which will end when all the physical systems cease function. Usually this is an orderly and undramatic progressive series of physical cues which are not medical emergencies requiring invasive interventions. These physical changes are a normal, natural way in which the body prepares itself to stop and the most appropriate kinds of responses are comfort enhancing measures.

The other dynamic of the dying process is at work on the emotional-spiritual-mental plane and is a different kind of process. The "spirit" of the dying person begins the final process of release from the body, its immediate environment, and all attachments. This release also tends to follow its own priorities, which include the resolution of whatever is unfinished of a practical nature - reconciliation of close relationships and reception of permission to "Let go" from family members. These "events" are the normal, natural way in which the spirit prepares to move from this materialistically-oriented realm of existence into the next dimension of life. The most appropriate kinds of responses to the emotional-spiritual-mental changes are those which support and encourage this release and transition.

When a person's body is ready and wanting to stop, but the person is still unresolved or unreconciled over some important issue or with some significant relationship, he or she will tend to linger even though very uncomfortable or debilitated in order to finish whatever needs finishing. On the other hand, when a person is emotionally - spiritually - mentally resolved and ready for this release, but his or her body has not completed its final physical process, the person will continue to live until the physical shut down is complete.

The experience we call death occurs when the body completes its natural process of shutting down and when the "spirit" completes its natural process of reconciling and finishing. These two processes need to happen in a way appropriate for the values, beliefs, and life-style of the dying person so that the death can occur as a peaceful release.

The physical, as well as the emotional-spiritual-mental signs and symptoms of impending death which follow are offered to help you to you to help you understand the natural kinds of things which may happen and how you can respond appropriately. Not all these signs and symptoms will occur with every person, nor will they occur in this particular sequence. Each person is unique, and what has been most characteristic of the way your loved one has lived consistently will affect the way this final shut down and release occurs.

This is not the time to try to change your loved one, but the time to give full acceptance, support, and comfort.

Normal Physical Signs and
Symptoms with Appropriate Responses

Coolness - The person's hands and then arms, and feet and legs may become increasingly cool to the touch, and at the same time the color of the skin may change. This is a normal indication that the circulation of blood is decreasing to the body's extremities and being reserved for the most vital organs. Keep the person warm with a blanket, but do not use an electric blanket.

Sleeping - The person may spend an increasing amount of time sleeping and appear to be uncommunicative and unresponsive. This normal change is due in part top changes in the metabolism of the body. Sit with your loved one, hold his or her hand, do not shake or speak loudly, but speak softly and naturally. Do not talk about the person in the person's presence. Speak to him or her directly as you normally would, even though there may be no response.

Disorientation - The person may seem to be confused about the time, place, and identity of people surrounding him or her. This is also due in part to the metabolism changes. Identify yourself by name BEFORE you speak rather than to ask the person to guess who you are. Speak softly, clearly and truthfully when you need to communicate something important for the patient's comfort, such as, "It is time to take your medication," and explain the reason for the communication, such as, "so you won't begin to hurt." Do not use this method to try to manipulate the patient to meet your needs.

Incontinence - The person may lose control of urine and / or bowel matters as the muscles in that area begin to relax. Discuss with your Hospice nurse what can be done to protect the bed and keep your loved one clean and comfortable.

Restlessness - The person may make restless and repetitive motions. This often happens and is due in part to the decrease in oxygen circulation to the brain and to metabolic changes. These changes may also temporarily alter personalities. Do not interfere with or try to restrain such motions. To have calming effect, speak in a quiet natural way, lightly massage the forehead, read to the person, or play some soothing music.

Fluid and Food Decreases - The person may begin to want little or no food or fluid. This means the body is conserving for other functions the energy which would be expended in processing these items. Do not try to force food or drink into the person, or try to use guilt to manipulate them into eating or drinking some thing. To do thins only makes the person much more uncomfortable. Small chips of ice, frozen Gatorade or juice may be refreshing in the mouth. Glycerin swabs may help keep the mouth and lips moist and comfortable. A cool moist washcloth on the forehead may also increase physical comfort.

Urine Decrease - The person's urine output normally decreases due to the reduced fluid intake, as well as a decrease in circulation through the kidney's. Consult with your Hospice nurse to determine whether there may be a need to insert or irrigate a catheter.

Breathing Pattern Change - The person's regular characteristic breathing patter may change with the onset of a different breathing pace which alternates with periods of no breathing. This is called the "Cheyne-Stokes" symptom and is very common. It indicates a decrease in circulation in the internal organs. Elevating the head may help bring comfort. Hold his or her hand. Speak gently.

Normal Emotional-Spiritual-Mental Signs
and Symptoms with Appropriate Responses

Withdrawal - The person may seem unresponsive, withdrawn, or in a comatose-like state. This indicates preparation for release, a detaching from surroundings and relationships, and a beginning of "letting go." Since hearing remains all the end, speak to your loved one in your normal tone of voice, identify yourself by your name when you speak, hold his or her hand, and say whatever you need to say that will help the person "let go."

Vision-like Experiences - The person may speak or claim to have spoken to individuals who may have already died. They may say they see or have seen places not presently accessible or visible to you. This does not indicate an hallucination or a drug reaction. The person is beginning to detach from this life and is being prepared for the transition so it will not be frightening.. Do not contradict, explain away, belittle or argue about what the person claims to have seen or heard. Just because you cannot see or hear it does not mean it is real to your loved one. Affirm his or her experiences. They are normal and common. If the frightened your loved one, explain to him or her that they are normal

Restlessness - The person may perform repetitive and restless tasks. This may in part indicate that something is still unresolved or unfinished that is disturbing him or her, and preventing him or her from letting go. Your Hospice team members will assist you in identifying what may be happening, and help you find ways to help the person find release from the tension or fear. Other things which may be helpful in calming the person are to recall a favorite place your loved one enjoyed, a favorite experience, read something comforting, play music and give assurance it is ok to let go.

Fluids and Food Decrease - When the person any want little or no fluid or food, this may indicate that the person is ready for the final shut down. You may help your loved one by giving him or her permission to let go whenever he or she is ready. At the same time, affirm your loved one's ongoing value to you and the good you will carry forward into your life that you received from him or her.

Decreased Socialization - The person may only want to be with a very few or even just one person. This is a sign for preparation for release and an affirming of who the support is most needed from in order to make the approaching transition. If you are not part of this "inner circle" at the end, it does not mean you are not loved or are unimportant. It means you have already fulfilled you task with him or her and it is time for you to say "Goodbye." If you part of the final "inner circle," the loved one needs your affirmation, support and permission.

Unusual Communication - The person may make a seemingly "out of character" or non sequitur statement, gesture or request. This indicates that he or she is ready to say "good-bye" and is "testing" to see if you are ready to let him or her go. Accept the moment as a beautiful gift when it is offered. Kiss, hug, hold, cry and say whatever you most need to say.

Giving Permission - Giving permission to your loved one to let go without making him or her feel guilty for leaving or trying to keep him or her with you to meet your own needs can be difficult. A dying person will normally try to hold on, even though it brings prolonged discomfort, in order to be sure that those who are going to be left behind will be all right. Therefore, your ability to release the dying person from this concern and give him or her assurance that it's all right to let go whenever he or she is ready is one of the greatest gifts you have to give your loved one at this time.

Saying Good-Bye - When the person is ready to die and you are able to let go, then is the time to say "Good-bye." Saying "good-bye" is your final gift of love to the loved one, for it achieves closure and makes the final release possible. It may be helpful to lie in bed with the person and hold him or her, or to take the hand and say everything you need to say so afterward you need never to say to yourself, "Why didn't I say this or that" to him or her.

It may be as simple as saying, "I love you." It may include recounting your favorite memories, places and activities you shared. It may include saying, "I'm sorry for whatever contributed to any tensions or difficulties in our relationship." It may also include saying, "Thanks you for...." Tears are a normal and natural part of saying good-bye. Tears do not need to be hidden for your loved one or apologized for. Tears express your love and help you to let go.

Tags: death, dying, hospice, the end

The downhill slides

: mamasdying; February 27th, 2010

I've noticed things that cause Mama to be worse on certain days. For two days, she was doing very good. She was coherent, talkative, seemed to have a little strength for walking, and said she was feeling better than she had in a long time.

Mama does better when she:

Eats - She was eating a lot more for those three days, one day prior and the two days following in which she felt better. She ate about twice what she usually eats.

Walking - She was walking more which seemed to strengthen her some as long as she didn't overdo it.

But that night, she said she had a sore throat, and the following day she was incoherent again, barely stayed awake during the day, said her feet hurt and throat hurt, and ate practically nothing.

I checked her feet. They were swollen a little bit so I upped her water pills. Swelling is something I have to watch carefully for because it indicates congestive heart failure and will decline her health very fast. I immediately put her on double water pills and bought some throat spray at the store.

Mama does much worse when she:

Doesn't Eat - And some days she eats little to nothing at all.

Swells - Any swelling at all causes her to be incoherent and her feet and legs to hurt.

Is ill - If she catches anything at all, cold or flu or virus or pneumonia, it's enough to run her down so low and so fast that it could be her end.

Mama is much worse today so I'm trying to stabilize her swelling and reduce it quickly, and treat the sore throat. If other cold symptoms appear, I will get Zicam and dose her with it and add antibiotics to regime.

I very mad at a friend of my dads, because he came over while he was nursing a cold. I'm sure that's where she picked up the sore throat. I tell them to stay away if they are sick at all, but no one listens. I tell them don't touch her, kiss her or hug her when you say hello or goodbye, but they don't listen. I tell them a simple cold can kill her and flu certainly will, but they don't care. I guess I'm the only one who cares.

Tags: colds, declining health, flu, swelling, water pills

Bed sores are so expensive

: mamasdying; February 27th, 2010

During the errand running for repair supplies I also had to stop for some medical supplies. They are so expensive. But Mama is getting bedsores. The treatments for bedsores that the doctor offers just do not work at all. They seem to have the attitude that she doesn't have much longer to live anyway, so just let the bedsore take it's course and give her lots of pain medications to keep the edge off. So I researched it online and found several alternatives.

First, there's an ointment called "Wound Be Gone," but it's $25 for a very small tube. If it works, it's worth it. I can't stand listening to Mama cry because her bottom hurts all night in bed and again all day sitting in the chair. She has one small bedsore about the size of a half dollar, that is red with maybe one layer or two of skin off it, right in the center top of her buttocks. I ordered the ointment ($25) and some bedsore foam bandages (another $25) online. I then went to the Medical Supply store for some necessities and other bedsore helpers. I purchased some lambskin to go under her on the bed and chairs ($30 for a small piece), a rubber sheet incase she messes up her bed again ($30), cloth panties that go over the pull ups diapers so she doesn't squirt out the leg again ($23), a bed pan (plastic because that was only $13 while the metal one was $100), foam bandages (just two singles because they were $7 each, and I cut them into pieces to go further), a long plastic body length bib ($13, because she spills water and food all over her when she eats and the laundry is killing me), and some small items. All together it was nearly $200. Looks like we'll be scrimping on food again this month.

Scrimping on food doesn't hurt us that much, because my mother being at the end of her hospice care barely eats anything. Her foods are mostly things she is willing to eat which are few and far. They consist of a fried potato for breakfast, a couple puddings during the day, another fired potato for dinner, and lots of water. I don't know how a person can hold on eating so little and losing so much weight.

Tags: bedsores, medical supplies, pain medication

The Crying Rag

: mamasdying; February 27th, 2010

The Crying Rag

How many people have a "crying rag" by their bed or in their purse or pocket? I keep mine by the bedside. My "crying rag" is just a soft washrag that absorbs real well. I lay in bed at night sobbing quietly, crying into the rag. I use it as a muffler so others cannot hear me cry. I use it to hold or plug my nose shut so watery snot doesn't run down my face. I use it to sop up tears.

Every morning, I place it in the washer with the other clothes and clean it for the next night. Every morning I wake with swollen eyes so thick I can barely see out them. When anyone asks me why my eyes are swollen, I tell them it's allergies. They either believe me or don't bother to question my answer or simply don't care.

My son came by yesterday to do some repairs, changes and heavy moving for me "bless his heart." He could see how miserable I am. I told him I cry all the time and think about suicide. He wanted to take me out to lunch to get away for a while. But I explained that we really didn't have the time. I was going to be gone an hour as it was just getting repair supplies, and I couldn't afford to pay a sitter-aid for another hour just to eat out. I also knew he couldn't really afford to take me out to eat. The sitter-aids are $20-$25 an hour. We can't use free volunteers because they are not allowed to help support the hospice patient to go to the bathroom or to eat or anything except call 911 if there is an emergency. So we have to pay for sitter-aids which cost quite a bit. I can only afford to pay one once a week while I run errands. We are all on unemployment, including my son, and it barely pays the bills and added expenses of Mama. We also had to buy some medical supplies for Mama's bedsores which cost us $130.00 we really didn't have to spend.

On top of everything else, I read in the paper today that Nevada unemployment will end Sunday for everyone who is on extended benefits. My son is on extended benefits and that is his only income for his family of four, plus he's helping me support my youngest boy until he graduates in May. Without his income I will not be able to pay utilities on my youngest son's home and he may have to change schools in the niddle of his last year. My husband has less than 8 weeks left on his and we were counting on the extension benefits to get us through a few more weeks after that. Without extension benefits, we are all going to go under. In Nevada, if you are married, you don't qualify for assistance of any kind. The most help you can get is WIC for children under 4 and food stamps for your children. If you have no children, then you have no help at all. I don't know what we are going to do.

So I use the "crying rag." Every night, most of the night, between times I have to get up and take Mama to the bathroom or get her some water, I use the "crying rag." I just cry softly most of the night into the rag so I don't disturb any one else.

Tags: crying rag, depressed, no hope, unemployment

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