Original post on 02.27.15 – Today’s post, and next week’s post, will be about an Alzheimer’s patients end of life. Not the most uplifting subject but knowing as much about it as possible allowed us to make good decisions for Mama and gave us a calmness about the process. Knowing what to look for allowed us to be prepared for when Mama went to live with her Lord and to help walk her out of her earthly home into her Eternal Home.
This is such a huge topic that again I have to remind you I am not an expert. I just know how it went with Mama, the advice we received and what I feel we did well and would recommend to you. Also included are information from other sites that I want to share.
The Importance of End of Life Care with Dementia
Coming to terms with a loved one nearing the end of their life with dementia is never an easy situation. But it’s important to recognize this stage to make sure our loved ones receive a good quality of life as this time comes near. Making sure there is a strategy is a MUST so individuals can die well with their dementia.
Karen Harrison specializes in end of life care and believes a problems with end of life care is the failure to recognize the signs early. Moreton Hill Care Center practices early end of life care using a NHS approved Golden Framework. Watch and learn about a daughter and her mother living with Alzheimer’s, who have benefited from this care.
Click on the picture below to watch this video.
While this video shows a woman in a private facility, everything they talk about being important at end of life is found in Hospice care and is available to your loved one regardless of your income level. I’ll write more about hospice care and the absolute importance of it next time.
An excerpt from the book “More Glimpses of Heaven: Inspiring True Stories of Hope and Peace at the End of Life’s Journey” by Trudy Harris, RN, where Bonnie Tingley tells about her experience with Jim a 56 year old man dying of colon cancer. I just finished reading this book and was blessed with each chapter I read.
I made a nursing visit early in the week, knowing full well I would need to check on them again as the week progressed. Jim seemed much weaker with each visit. His appetite was lessening and he was sleeping more and more every day. These are common signs that let you know when the body is beginning to shut down and getting ready to transition into a new life, which we call eternity. People who have a very deep and abiding faith in God long to see Him at this moment and want to go on to the heaven they know has been prepared for them since the beginning of time. They are seldom afraid and Jim was getting closer to his phase with each day.
Later that day she received a phone call from his wife Peg saying that although Jim’s breathing and extremely shallow and he was exhibiting all the signs and symptoms of impending death, he seemed unable for some reason to be at peace and to let go….. Peg asked if I would come right away to be with them.
I jumped into my car and sped the distance to their home in record time…….. Sitting at the head of the bed, holding Jim’s hand in hers, was his lovely wife, Peg. All three children were on the bed with their dad.
I quietly prayed for the words to accomplish what the Lord wanted me to do at this time to help both Jim and his family. Words came to directly from the Holy Spirit, I know. I whispered softly to Jim that Peg had his hand in hers, and that Jesus was holding the other one. I reminded him that Jesus loved him and his family dearly, and He would take care of them and provide for all of the. I told him that even though he loved them very much, Jesus loved them even more. Peg and the children would be well cared for by this room full of good people. Now it was time for him to let go and go on to God. I assured him that the time was right. I told him that when he was comfortable and ready, that he could simply let go of Peg’s hand and follow Jesus, who was holding his other hand. He became immediately calm and died in an instant, very peacefully. Husbands often wait until “someone in charge” comes to be with their loved ones. It is as if, until the very end, they want to be sure their family has the loving support and care they need.
I know of no other experience that is filled with greater peace and joy than to walk with someone into heaven. It is a rare and sacred moment and one in which you feel you can reach up and touch the face of God. We are simply vessels through which He makes Himself known to His children. Very humbling indeed.
My notes from Mama’s last days. I started to summarize certain parts regarding her bowels but since this is such an important thing to keep track of at that point, I decided to keep it in. Sorry if that creeps you out but if you’re caring for someone, it will become your reality so best to learn now!
Thursday, December 13, 2007 – six days before she died
Mama ate one pop tart for breakfast today. Mama has started this jerking with her hands and feet that she didn’t do before. After feeding mama this I went to Mannino’s pharmacy to pick up her new medicine and the emergency hospice medicine. There was no charge for it as Hospice paid for it. Went to Scott’s to pick up her Seroquel. It was $100. I put the Fentanyl pain patch on mama around 10 am. She’s having trouble swallowing more lately and was only able to eat a small bit of lunch. One of the medicines they gave mama is morphine for breakthrough pain which means that if the pain patch is not enough at times that we give her the morphine. I gave her morphine when she needed it at 1 p.m. and 9 p.m. Her Seroquel was doubled and she slept all night Thursday night.
Friday, December 14, 2007 – Noon last nourishment
Mama sat on the toilet twice in the morning but couldn’t go either time. Her jerking is worse and she’s was in terrible pain when she woke up at 8 and I gave her morphine then. She jerked her hand when she tried to hold her coffee so I tried to help her drink some by me holding it to her mouth but she couldn’t swallow any. She had no breakfast because Elaine (hospice) came shortly after that and mama was in so much pain that it took a long, long time for her bath and all. We gave her another dose of morphine at 9 am. and when that started working Elaine was able to finish mama’s bath. Mama drank about half an Ensure in the middle of the day. Her hospice nurse Kate came around lunch time and said all mama’s vital signs were good, her breathing was fine, blood pressure and pulse were fine. As mama had not had not gone to the bathroom since Sunday, December 9 when she had diarrhea we thought her painful reactions may be due to being constipated. Kate gave her an enema, and before leaving she inserted the catheter into mama at my request because it is so hard to get mama to the bathroom. Kate could see how mama is so out of it and in pain and said she thinks we called in Hospice just in time. Two hours after Kate left mama had not had a bowel movement so I called Hospice and they said to use a glycerin suppository to try to help it along. Roy went to Scott’s Pharmacy and got some for me. I used that and still nothing happened, so Hospice said to give her some Milk of Magnesia to try to help it from the other end. She was in terrible pain, crying but not saying actual words and her voice does not sound like her at all. Her body is so rigid and jerking. It is absolutely horrible watching this sudden change in mama and I have been crying all afternoon at the realization that my mother is now actually dying. I don’t let her see me like this because I want so much for her to be peaceful and not worried. She cannot swallow anything and can not eat anything. I gave her morphine at 1:10 and 2:40. I spoke to Kate in the late afternoon and she said Dr. Williams said it’s okay to give mama 2 xanax 3 times a day to help with her agitation. I asked her if mama’s inability to eat and all these changes mean the end is near. We previously made the decision to not have a feeding tube inserted if she stopped eating so I told her that if stopping feeding her would help mama be able to die without lingering in pain we wanted to do that. She said they would support us in that decision. Still none of the fluid from the enema has come out. Her catheter bag does have urine in it, though not much and it is dark reddish brown. I emailed Chad and Amy and talked to Chad during the day on the phone about Grannie’s condition. I need Chad to come be with us for me and he needs to be here for Grannie. He and Amy came to see her in the evening and Chad read scripture to her which was such an amazing spiritually uplifting thing for me and I know for mama. They stayed and watched a movie with us and went back home. I gave mama 2 xanax, 2 Seroquel at bedtime and she had a terrible time swallowing them.
Saturday, December 15, 2007
Mama was asleep when we woke and she woke up around 9:30 so I put Vaseline on her lips and moistened her mouth with the swab. Harriett came around 10 and when mama woke up she was stiff, jerking, terrified looking and not saying anything understandable. She had morphine at 10:15, 11:40, 12:30, 1:30 and 2:27. It was difficult to wait the whole hour before giving her more morphine because she’s in such pain. Roy went to get her some Milk of Magnesia and in the afternoon we gave it to her. She couldn’t swallow it and struggled to get 2 tablespoons full down. She is waking up in such pain and such agitation that I called the nurse around 2:30 to see if I could increase the morphine to 1 cc which the nurse said was okay and mama took at 3:31, 5:15 and 7:00. At 7 I gave her the night time Xanax and Seroquel and she slept through the night.
Her nurse said to grind up her pills to make them easier to swallow. Our son Chip and his fiance Liz came over. Roy and Chip going to buy suits since we know her funeral will be soon and groceries. Liz went to the pharmacy to pick up cream for mama’s itching. I cooked chili for Roy, Chip, Liz and me. Chip was able to have some private time with Grannie. She was so very special to both of our boys that their presence is very special to her.
Sunday, December 16, 2007
I woke around 7 and heard on the monitor that mother was snoring so I took a bath and got ready for church. Before leaving I heard her awake and went to her room. Her eyes were open and her arms were held out to the side, stiff as a board. Her hands were cold so I put socks on them to keep them warm. I changed her foot socks and put two pairs on to keep her warm. I put Vaseline on her lips and swabbed her mouth. She was only able to make sounds and was obviously in pain. I ground up her Xanax and Lexapro and put the powder on her tongue, then gave her the morphine which she was able to swallow. When I returned from church Roy said she had slept the whole time. Harriett came over after church and mama slept the whole time, waking just slightly a couple of times. Around 4:30 mama woke a little more so I put Vaseline on her lips and swabbed her mouth again, put some vaginal cream on her so she wouldn’t itch and laid her arms under the covers. I put on some Pan Flute Christmas music for her to listen to and she made gurgling sounds for a while. I put her head up a little higher to try to help with that. In the evening her breathing is a lot more gurgly and irregular. She opened her eyes for a little bit and was in pain so I gave her morphine around 5:30.
Roy came into the room with mama and I and said a prayer for her about what a wonderful mother and grandmother she’s been to us and prayed that God would take her to Heaven so she would not have to suffer. He never ceases to amaze me. He’s been absolutely wonderful to mama while she’s been here and has helped in countless ways. Around 7 mama was trying to reach her arm across her body so I shifted her body to her side and put a pillow between her legs. I removed her teeth to soak and ground up her sleeping medicine and Xanax and gave it to her. She seemed to fall asleep immediately and looked very comfortable which she hasn’t looked recently.
That is the end of my documenting and I wish deeply I had continued to the end. The day she died, we could tell it was near the end because her finger nails started turning blue, when you raised the blanket it smelled bad which is a sign her organs have shut down, she gurgled a lot, and her breathing got more and more irregular until it stopped. Mama died on December 19th at our home with her family holding hands standing and sitting around her.
END OF LIFE SIGNS, THE DYING PROCESS
THE ARTICLE BELOW AND MANY MORE END OF LIFE RESOURCES CAN BE FOUND AT:
The dying process usually begins well before death actually occurs.
Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.
As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead. As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.
There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.
The Journey Begins: One to Three Months Prior to Death
As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.
The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.
One to Two Weeks Prior to Death
This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.
The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.
The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:
- The body temperature lowers by a degree or more.
- The blood pressure lowers.
- The pulse becomes irregular and may slow down or speed up.
- There is increased perspiration.
- Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
- Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
- Speaking decreases and eventually stops altogether.
Journey’s End: A Couple of Days to Hours Prior to Death
The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.
The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes” breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.
Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.
Eventually, breathing will cease altogether and the heart stops. Death has occurred.
Please come back next time when I’ll share more topics about end of life care including Hospice, Letting Go and Getting things in order. If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.
If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is firstname.lastname@example.org if that is an easier way to communicate.
Until next time,
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