Alzheimer’s Disease is one of our most challenging diseases to deal with, for both the one experiencing the loss of memory, dignity and function, and their caregivers. When a loved one has Alzheimer’s there are five situations that may occur that are especially difficult for Alzheimer’s Caregivers to come to terms with. These include 1) when it’s time to move the person to a facility, 2) if the person finds a new love interest, 3) when the person no longer talks, 4) when the person no longer recognizes you, and 5) when it’s time to engage hospice care services.
Number 5 is written to in an excellent article posted here. “The need to involve hospice can be extremely difficult and even depressing. It’s common to dwell on dark thoughts of impending death. Some families delay ordering hospice care because it would force them to acknowledge that the end is near and they just can’t deal with that.”
“In reality, the decision to enroll a loved one in hospice care signifies anything but giving up. It is the most courageous, selfless, and compassionate action one can possibly take once a loved one once has reached the final stage of life.”
With dementia it’s easy to feel like you’re on your own. Often it’s hard to know what’s going on and what to expect going forward. Compassion Hospice has experienced, compassionate team members who would love to visit with you, discuss your options and support you in those choices. Our nurses, chaplains, counselors, hospice aides and social workers come to you with dementia and Alzheimer’s training, guaranteeing that your clinician will understand the disease and how to best manage the symptoms that come with dementia. We also consult with our network of medical directors who are knowledgeable in both dementia and hospice care. We are available 24/7 to answer your questions and give you the help you need – 409-835-8357 .
I read an excellent recent article on the pallimed website regarding this common question of “Am I giving up on fighting cancer when I choose hospice?” In it the author Amy Velasquez RN BSN OCN, a palliative care nurse specializing in helping cancer patients, discusses this weighty issue:
In my line of work with cancer patients, they have taught me strength, courage and most of all faith. Our goal as the palliative care team is to find out what the patient’s absolute end goal is, and is it attainable? A patient that has stage 4 lung cancer has been diagnosed with a cancer that is termed “incurable.” So does that mean if they die from this cancer they gave up or didn’t fight hard enough or didn’t have enough faith? I think only you can answer that question. But let me remind you that stopping a race because your lactic acid is burning the living heck out of your legs, and you can no longer keep up in school anymore, is something YOU have control over. When a cancer decides to take over despite the heart and soul your oncologist has put in your treatment plan, and all the faith you have given to eradicate this cancer, this is NOT a definition of giving up.
When patients are given the diagnosis of “incurable” cancer, the goal should be to find a treatment that will extend their life as long as possible, and also balance the side effects with their quality of life. Cancer treatments have come so far in the last 15 years, but still they not perfect and have not pleasant side effects (visit http://sideeffectsofxarelto.org/xarelto-lawsuits/). Most importantly, the oncologist and researchers are always creating new novel treatments to search for a cure or to extend someone’s life as long as they can while living with an incurable cancer. The palliative care team works side by side with the oncologist to make this happen. We rely on direction from the oncologist and the patient to direct us in their goals. Of course everyone wants the “C” word to be cured, but if it cannot, what is your goal?
Now your goal can be to live as long as you can while feeling halfway decent. So stopping cancer treatment and doing best supportive care—just treating the symptoms of the cancer does not mean you are giving up. Even going on hospice when your cancer has made a decision you do not agree with also does not mean you gave up. It means you had no control over the cancer’s stupid decision, but you do have control over how you look at stopping treatment. This is different for everyone. So if this is you, please don’t say “but I don’t want to give up.” Please dig deep and find out what is really important to you and share this with your family, let them know, that you are not making the decision to stop treatment. The stupid cancer has made this decision for you.
There’s more in this excellent article: What Does Giving Up Really Mean – I encourage you to read it and share with others.
Over the last year or so we began discussing how hospice can make a positive change in your loved-one’s last days, weeks and months. Studies show that on average people have more moments, live longer, more comfortably, and with a higher quality of life when they choose hospice care in their last months of life. I’ve seen it with my own eyes literally thousands of times over the last 14 years.
Hearing this from us usually pales in comparison to someone’s real life experience. In their own words you can sense the real struggle with the initial decision and the gradual realization that for most, the decision was the best could be done for their loved one and one that gave them more time with them, not less.
Below is a letter sent to us from Gina, the niece of one of our beloved patient’s, Mrs. Moss. She came to us with a type of Leukemia that at the time required hospitalizations nearly weekly for blood transfusions. With her permission, we are sharing a bit of Mrs. Moss’ story and Gina’s experience with the Compassion Hospice team:
Trying to find the right words to thank your team for the care of Christine Moss is not easy but here it goes. I call you a team, yet a group of angels seems more appropriate.
As you know in the beginning I was anti-hospice, believing you were a death sentence. That January day in 2015 when Aunt Chris decided to go under your care, my heart sank to the ground. “Are you serious God? After all we’ve been through to save her life with these specialists, treatments, transfusions, etc., you two are choosing this? I know she is your follower but how can this possibly be the right choice for her?” Selfishness is typical for us here on Earth, wanting to try everything possible to extend the lives of our loved ones. Some of us don’t even stop to think about what our loved one really wants and may have already planned out with their Creator. Jesus very gently told me to continue to love and care for her but to step aside and let him show us what his love can do. The decision He and Aunt Chris made presented a yearlong miracle right before our very eyes. A death sentence was not what this was. It was another year life sentence free of doctors, hospitals, tubes, needles, less medication and unnecessary expenses.
Everyone including the medical field found themselves speechless and in awe when her health actually began to improve with no further blood transfusions. After a year of living, not dying, below are just a few of the things she was able to do and would not have done without Compassion Hospice. I wanted to share these at her Celebration of Life but was not able to:
- 28 Sunday Worship Services with Pastor Wheeler at First Church of Orange
- 19 Ladies Tuesday Morning Prayer meetings with her dear friends
- 12 months enjoying her beloved Chihuahua “Precious”, witnessing her 3 lb weight loss instead of gain
- 22 more episodes of “The Andy Griffith” show
- Work in her yard including planting flowers in her garden 2 or 3 times
- Enjoy 82 more hamburgers
- Recite her silly riddles numerous times such as, “If You and Your Folks” and “Peter Piper picked a Peck of Pickled Peppers” while learning how helpful the internet could be when she wanted to know what a “Peck” was equivalent .. LOL!
- Become the prime interviewee for KFDM Channel 6 as the star of “A Special Report” concerning Hospice
- Celebrated several holidays and occasions such as another Birthday of 87 years with family, friends and even her new family, Compassion Hospice, Easter, Mother’s Day, Thanksgiving, Christmas, and even rang in the New Year, 2016
- Experienced having “maids”, “servants” and pampered care at her manicured fingertips
- 226 hours of unlimited phone calls to and from family and friends
- Receive a powerful touch from the Lord in her hospital bed 4 days before she went to be with him
- Take a walk on Crystal Beach feeling the sand beneath her feet
- Have her own Christmas Carolers (Compassion Hospice members and some of their own family members) singing on her front porch as she listened from her hospital bed window
That’s a lot in a year!!
Thank you, Compassion Hospice:
- Natosha, for checking on her well-being weekly while keeping me informed and for nominating her for the Channel 6
- Pastor Pitre, for coming to see her weekly and teaching the word “to each other” …LOL! You read her poem beautifully and I appreciate
- Thank you to the doctors and nurses: Jean, Elaine, and Amanda for keeping up with her health
- To Allen and Paula for your persistence in encouraging she go under Hospice Boy were you insistent!! But thank God.
- Last but not least for all of the references to Medicaid help such as Amerigroup, PRN, that allowed her to…
STAY IN HER HOME!!!
All of these things would not have been possible for her to do in the Nursing Home.
We loved Mrs. Moss, it was such an honor to be trusted with her care and help her get to those more moments – below is a youtube video she recorded, it gives you a glimpse of this strong woman’s personality. When you need help with your loved one, please call us at 409-835-8357 .
Our mission is to help you and your family plan and receive the care you deserve with dignity and respect.
The majority of Americans want to die at home surrounded by family and friends, but most end up dying in the hospital or nursing home, cared for by strangers. Half of Americans die in pain that could have been treated. Sick people have come to fear losing their dignity or burdening their families more than they fear death. And this is all happening in a country that is meant to prize the rights of individuals and champion respect for personal wishes. Compassion Hospice was established because you and your family deserve better. We provide nationally-recognized comfort care in the privacy, comfort and familiar surroundings of your own home. We provide you with the practical information, advice and legal tools you need to ensure your wishes and those of your loved ones will be respected. By helping you improve your own quality of care, we can bring about dramatic change, one person at a time.
A document gaining in popularity recently that may also help you is the Five Wishes Document. The Five Wishes document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It is unique among all other living will and health agent forms because it looks to all of a person’s needs: medical, personal, emotional and spiritual. Five Wishes also encourages discussing your wishes with your family and physician: Aging with Dignity
We know for many people, life around Christmas and the other holidays can be especially difficult as we continue to mourn the loss of a loved one. Help is available. Here are a few ways to cope with your loss:
Some Ways to Cope With Grief During the Holidays
Give Yourself Permission
Giving yourself permission to feel is exactly what it sounds like. It means allowing yourself to feel whatever emotion emerges, whenever it emerges, without judgment or shame.
Accept Your Thoughts and Feelings
Accepting our feelings without criticism can be such a valuable tool for us. It puts us in a right relationship with reality.
Give Yourself Grace
Give yourself a ton of grace this season, and for the rest of your life, really, and don’t care what anyone else thinks about how you’re handling your pain.
Read more from the excellent timely article here:
Some Ways to Cope With Grief During the Holidays
If you’re mourning the loss of your loved one, we have trained counselors available to help. 409-835-8357
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