HOME-CARE AND HOSPICE
You’ve done everything in your power to care for your loved one, even as they require more and more care. You run like crazy all day long and collapse, exhausted, at night. But as tired as you are, you want to continue caring for them at home. And that’s wonderful of you. But if you get sick from exhaustion or stress, you’ll be of no help to yourself or your loved one. So maybe it’s time to get a little help so you can stop spinning occasionally and take a much-needed break. Please learn from our caregiver mistakes: so many of us ended up sick, and saying, “I should have asked for help sooner!”.
CHOOSING A HOME-CARE WORKER
By: Elinor Ginzler | Source: AARP.org
When did you realize that your loved one needed help? For some people, the recognition came with a phone call—”Mom has fallen and broken her hip,” or, “Dad has had a stroke.” For others, the awareness comes gradually—they might notice that Mom can’t get around like she used to, or that Dad’s forgetfulness has gotten progressively worse.
Whether the need for you to play a caregiving role comes quickly, slowly, or in fits and starts, you really are better off not trying to provide all the care by yourself. You need help! Why? Because when you share the care, you can be sure that your loved one gets all the attention he or she needs. For many caregivers, hiring a home-care worker is a good solution. A trained home-care aide can help you meet the needs of your loved one while he or she remains safely at home.
But hiring someone can be a tricky business. So, here are some tips and resources to consider if your loved one needs assistance at times when you can’t be there. Read the rest of the article:
http://www.aarp.org/family/caregiving/articles/choosing_a_home_care_worker.1.html
CARE.COM
An online “classified ad” site with caregivers looking for home care work. Descriptions, pictures (sometimes), and references.
http://www.care.com/senior-care
HOSPICE
There are many places you can turn to for help: family; friends; church; hospice; in-home care assistance. It can be hard to ask for help from non-professionals, but if you wait too long the help you will need will exceed picking up groceries or medication, or giving you a break. If you wait too long, you’ll have to ask someone to care for both of you, or to take over for you while you’re in the hospital. Please take a minute to read the information below. First of all, get over the idea that hospice care is “end of life care”. That’s simply not true. Here are some common Hospice “Myths and Realities” from HospiceDirectory.org:
Myth: Hospice is a place. Reality: Hospice care usually takes place in the comfort of an individual’s home, but can be provided in any environment in which a person lives, including a nursing home, assisted living facility, or residential care facility.
Myth: Hospice means that the patient will soon die. Reality: Receiving hospice care does not mean giving up hope or that death is imminent. The earlier an individual receives hospice care, the more opportunity there is to stabilize a patient’s medical condition and address other needs.
Myth: Hospice is only for cancer patients. Reality: A large number of hospice patients have congestive heart failure, Alzheimer’s disease or dementia, chronic lung disease, or other conditions.
Myth: Patients can only receive hospice care for a limited amount of time. Reality: The Medicare benefit, and most private insurance, pays for hospice care as long as the patient continues to meets the criteria necessary. Patients may come on and off hospice care, and re-enroll in hospice care, as needed.
Myth: Hospice provides 24-hour care. Reality: The hospice team (which includes nurses, social workers, home health aides, volunteers, chaplains, and bereavement counselors) visits patients intermittently, and is available 24 hours a day/7 days a week for support and care. Some hospices are able to provide “continuous care,” but hospices must have a program in place for this to happen and hospice patients must meet certain criteria.
Myth: All hospice programs are the same.
Reality: All licensed hospice programs must provide certain services, but the range of support services and programs may differ. In addition, hospice programs and operating styles may vary from state to state depending on state laws and regulations. Like other medical care providers, business models differ. Some programs are not-for-profit and some hospices are for-profit.
Myth: Hospice is just for the patient. Reality: Hospice focuses on comfort, dignity, and emotional support. The quality of life for the patient, and also family members and others who are caregivers, is the highest priority.
Myth: A patient needs Medicare or Medicaid to afford hospice services.
Reality: Although insurance coverage for hospice is available through Medicare and in 44 states and the District of Columbia under Medicaid, most private insurance plans, HMOs, and other managed care organizations include hospice care as a benefit. In addition, through community contributions, memorial donations, and foundation gifts, many hospices are able to provide patients who lack sufficient payment with free services. Other programs charge patients in accordance with their ability to pay.
There are more Myths and Realities at: HospiceDirectory.org, as well as sections about: About Hospice, Who is Eligible for Hospice, Paying for Hospice: Medicare/Medicaid/More Options, Hospice Stories, Caregiver’s Corner, and Frequently Asked Questions. One of the fastest way to find a hospice in your area would be to talk to your physician or NP and get their recommendation.
If you don’t need medical care help, just help with day-to-day things like eating and running errands for you or your loved one, there are also organizations like Home Instead Senior Care that will come to your home for however long you need them: just a few hours a day, if you want. They can provide companionship so you can get out and run errands or take a break, or help with eating, dressing, bathing, medication reminders, and many other services. So why not try having someone come in for a few hours a week and see what you think? If you’re a caregiver, wouldn’t a few hours to do nothing be great? Just to take a long bath and read, or have lunch with a friend? And if the help is for you, wouldn’t it be nice to have someone lend you a hand once in a while? Our own Henri R. works with Home Instead, and loves it.
Here are some more websites with great information about caregiver needs, and understanding and locating hospice and care assistance in your area:
Hospice Organizations listed by State
Preventing Caregiver Burnout Tips and Support for Family Caregivers
Alzheimer’s caregiving: Maintain your support network
Alzheimer’s caregiving can be too big a job for one person. Friends and family can help share the burden. Here’s how to ask for help.
Ann, love and light and strength to your family. It sounds as though Ken’s passing was as peaceful as possible, given what he was going through physically, and it is great to hear that the family truly came together at the end of his time with you. Carry him with you in your hearts, and allow yourselves the time and opportunity to mourn and to heal as it feels right for you. The grief process doesn’t have any more of a schedule than the illness, or the passage itself. Let things happen as they may, go with it, and know that we are here for you as you go through this difficult time. Thoughts and prayers for you and your husband, and for all of Ken’s loved ones.
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I was not sure where to post this comment, but here goes. In a timely fashion-my FIL probably has a week to live at the most-our local newspaper had a wonderful article today-”Ensuring your wishes at end of life are honored”. In a nutshell, the article discussed an advanced care plan/directive that was created by our city hospice in 2010. The process is called Honoring Your Wishes, and individual future health care preferences are discussed, documented, and honored by family, friends, and the health community.
This sounds ideal, but keep in mind that you would be challenged to clarify your values and beliefs about your quality of life while you are still in good physical, cognitive, and emotional health. So much thought processing, but, in the end, worth it for many people.
Apparently, you can even outline what your final days and good-byes might entail:
–Whom do you want near you when you pass?
–Do you want certain sounds, smells, experiences?
–Do you or do you not want pain meds, if you are uncomfortable?
–etc…..
If you want to read the entire article, the link is
http://www.press-citizen.com/article/20130223/OPINION01/302230011/Ensuring-your-wishes-end-life-honored?nclick_check=1
BTW, I do feel sad about my FIL, just not terribly so at this particular moment. I’m sure I’ll have my cries down the road….especially at the funeral. But what a wonderful, long life we will have to celebrate!! Hospice is now officially involved, and the entire family is in agreement about everything. And…..there is no longer any denial….it is obvious FIL is dying. Please keep him and the rest of the family in your thoughts and prayers.
~Ann
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Back again about my FIL. The family met with his nephrologist last week, and the doctor felt they should continue dialysis for now. With continued dialysis, my FIL is expected to live a few more months-a year at the most. Of course, this is just an estimate. With as little as he’s been eating, my husband can’t see his dad living more than a few more months. FIL’s mind is starting to be affected, too-occasional statements that make no sense. Very unusual for him. Hospice is prepared to step in down the road-when death is more imminent, and dialysis is stopped.
I worry about my MIL more than my FIL. He is at peace and ready to go, whereas she just can’t imagine life without him. She has many female friends, but right now, she is spending all of her days with her husband. She doesn’t go to bridge or PEO any longer, so maybe we need to provide some gentle prodding. She’s going to need her friends after my FIL is gone. I fear she may be one of those individuals who dies shortly after the spouse dies. But who knows-she may surprise us all and cope better than we’re expecting.
Right now, we’re just in a wait and see mode, and I’ve appreciated the support from all of you
~Ann
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These choices are so difficult for families…both of my parents were very clear that they both desired comfort measure…my Uncle (Mom’s brother) is one who wants everything done…fortunately he also understood the need to respect his sister’s wishes. Hopefully hospice can provide some assistance with his choices…sending you prayers during this time.
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Hi Ann,
Do you know if he has any advance directives in place? If he does, then his wishes must legally be respected, no matter what. When my Daddy was ill many years ago (cancer, and aftereffects of a TIA), he verbally stated that he didn’t want any heroic measures taken, but he never had it put in writing. Long story short, he went into a cardiac arrest, flatlined, was resuscitated, but was in a nearly vegetative state for the last 7 months of his life, and all it did was prolong the inevitable – except that he no longer had a choice in the matter. My biological mother did things for her benefit, instead of his, and this caused a huge rift that has never healed…she and I have not spoken for nearly 12 years, which is probably for the best. On the other hand, my Mom (MIL) made sure to have a living will in place at the end of her life, and it was good to know that she went peacefully, just the way she wanted it. There is no better gift than to give someone the dignity they deserve, no matter how their illness has affected them physically. I hope that things smooth over with the family, and that, in the end, his passage is exactly the way he wishes for it to be, and that they can accept that. Peace and strength to you and your family as you continue on this journey. -M
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Molly,
Thank you for stating the facts, yes a living well is the thing that must be in place, the term escaped me.
And thank you for your very timely comments to Ann.
~Char
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Hi Molly,
Thanks for the suggestion about advance directives. First of all, I was mistaken about hospice already being involved. The siblings and my MIL/FIL will meet with my FIL’s nephrologist next week. Based on what my FIL then decides-whether or not to continue dialysis-hospice may possibly then step in. FIL is definitely a DNR, and my husband is his medical power of attorney, since he (my husband) is a physician. We are fortunate that my FIL is still lucid, in fact quite aware that his time his limited. If he decides to stop dialysis, MIL and SIL are going to have to accept that, and I would hope that hospice could step in to help them at that point. They are both still in a state of denial……sad. Thank you again for caring, Molly
~Ann
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My father-in-law is 86, and he has a variety of medical conditions-congestive heart failure, diabetes, hypertension, and atrial fibrillation are the most serious. Dad (I normally call him by his name, but want to be discrete on this site) is very “with it” mentally, and his senses are intact. He has virtually no appetite, and has lost a substantial amount of wt. The family has just incorporated the assistance of hospice, and had their first family meeting yesterday (My husband has 2 older siblings, and his mother is still alive). A decision was made to not place a gastrostomy (feeding) tube. It is natural to lose one’s appetite and even vomit, as a person is dying, so Dad requested not to get a feeding tube. My sister and mother-in-law are not very happy about this decision, as they feel every intervention possible should be implemented. My husband has talked at length to his father about some pretty heavy issues. My dad told him that he is not afraid to die, and that his faith has deepened in the past couple of years. He would like to visit with his minister. He expressed that he did not want a feeding tube, and said that dialysis is a “waste of money” (In his case). Dad currently goes for dialysis 3 times/wk. and feels worse afterwards. He does now know that, if he requests to stop dialysis, he could die in a matter of days. My husband and his older brother feel that Dad’s wishes should be respected, since he is mentally competent and lucid. I worry about my mother-in-law and sister-in-law. The former is rather nervous and is just gaunt from not eating. I don’t know how she’ll cope when Dad does die. My sis-in-law is still reeling from the tragic death of her youngest child (adult son) last August. I’m sure the thought of the death of another so close in the family frightens her. Any thoughts about how to calm the female in-laws and make them feel that their opinions are not being ignored?
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Ann,
I am under the impression, that a patient who is fully competent and lucid, has the
final say over his/her health care options. Since it’s your father in law’s final
wish not to have a feeding tube inserted; I would hope his family would be on
the same page. I feel sorry for him if there is any opposition going on
in front of him in his fragile state.
I know this must put you Ann, in an awkward position, but you can still be
sympathetic to your MIL and SIL, while keeping your FIL’s wishes in tact.
I understand, what your SIL must be going through, as I lost my dad to
PC 20+ years ago. BUT, what I don’t understand is why anyone would
want the man to suffer more than he himself wants to. Being on dialysis
is very serious, his quality of life is not good. My SIL’s dad did the same thing
it was his decision, and his family respected his wishes.
Maybe they just need time to digest all of this information, and come to
terms with their husband and dad’s impending death.
I wish you all the best as you travel this road, not an easy trip but we all go there
from time to time, all my best
~Char
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Well, it is Monday, 2/25, and the nurse practitioner called my husband. Since my FIL is in such a weakened state, and they are stopping dialysis, the nurse estimates he’ll die by approx. Thursday. It’s reassuring to know that she will have meds to keep him comfortable till the end. We are hoping all of the grandkids make it here to talk to their grandpa one last time. The last comes in Wed. evening, as she works for the Associated Press, and is currently in West Africa…..I pray Grandpa hangs on for her. Kirk-my husband-is on vacation this week, so he is headed up this afternoon to spend more time with his dad. We both cried and laughed this morning, which I guess is good. We discussed funeral arrangements-who will speak for the family, what should be said, possible songs for the funeral (I suggested “You Raise Me Up”-Josh Groban and “Nearer My God To Thee”. Just loved the latter in Titanic, and my husband tells me it’s a “good Protestant song”-Ha! My husband converted to Catholicism, but he does, on occasion, miss some of the Methodist traditions. Please keep my FIL and MIL, along with the rest of our family, in your hearts and prayers. God Bless all of you, and thanks for your support.
~Ann
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Ann,
I will hold your family and of course your FIL in my heart during the days ahead. May he pass peacefully, with his beloved family by his side. Do your best to hang in there, we are here for you.
~Char
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Dear Char,
Thanks for your kind words; your thoughtfulness is very much appreciated. We are fortunate that Ken, my father-in-law, is still quite lucid and able to converse about funeral plans, encouraging his wife to spend time with her friends after he dies, etc. He is extremely at ease talking about his death, which makes it much easier for the family members. Always a very thoughtful man. In fact, the nurse practitioner said to my husband on the phone this morning, “I just love your dad. He is so caring.” That just made Kirk bawl, because it’s so true. I feel blessed to have had Ken in my life for 25 years. Your caring thoughts in the coming days will be welcomed, as Ken is quite physically weak now. Thank you…
~Ann
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Editors Note: I reposted this comment from Ann.
UPDATE: Ken passed away around 10:00 PM this evening, following a semi-brief period of severe difficulty breathing. His children and wife were all there. Kirk and I are very much in a state of sadness and grief right now…..please keep us in your prayers. Ken was one of the kindest and most thoughtful older men I’ve known. Kirk will miss his words of wisdom.
~Ann
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Thank you for putting the hospice benefit into clear language for your readers. I’ve been a hospice nurse for fifteen years and love what I do. If there is any way that I can help or questions I can answer please let me know.
warm regards,
Diana
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Diana,
Thank you for your chosen profession and more for loving it. You are an angel on the front line of battle, and you all do an amazing job.
~Char
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Thanks, Diana. You said what I was going to say. I am also a hospice nurse and love what I do. It’s great for when you need us.
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Jean, your summary and advice about Hospice care is SO on target. Based upon the comments that have been posted, it has helped many! Having provided care through Hospice, I am familiar with the myths that pervade modern culture and sometimes prevail. Your clarifications are appreciated, as well as your humour! Thanks for all of your research. Continue in your diligence!
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Thanks, Suzanne, for the encouragement. I’ve learned so much about hospice and nursing homes from our caregiver comments and stories!
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