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Featured Question My Mom Won't Give Me a Moment's Peace
Question: My mom is 82 years old. She has COPD and last year, had a heart attack. There is nothing that can be done for either of these conditions due to her advanced age. She lives alone, about 50 miles from me, and will not move closer to make it easier.
My mother was a prominent executive with a national retail chain and raised two children alone, putting both my brother and myself through college. I teach part-time and also care for my mother-in-law who is in a care center nearby. I also provide after-school care for two of my grandchildren.
My mother, whom I dearly loved, does not let me have a moment's peace. She always wants to know where I am, what I am doing, why I am doing that, etc. On days that I am at school, even though I have told her that I am teaching, she becomes upset if I do not call on check on her. I feel that she is totally smothering me.
My brother, who lives in the same town that I do, but who has a very high-powered position, calls her once a week (maybe) and sees her at Christmas. I take her to all her doctor appointments, etc. I know that this sounds very unappreciative, because she is my mother, but how can I not be so angry because she must constantly know my whereabouts, my activities, etc.
My mother is also very rude and extremely outspoken and will belittle you for any supposed slights. Her grandchildren will not call her anymore because she tries to run their lives also. I am all that she has who is still in constant contact with her. My husband says to just ignore her, but I cannot. She is my mother. Please advise me. I am at my wit's and sanity's end.
Kate Peterson LMSW (Enclara Health Social Worker) answers: Thank you so much for this painfully honest question. Caregivers are often caught between caring for their ailing parents and the demands of modern life.
Many people who have had high powered careers have difficulty accepting diminished abilities. It is very hard for the “in-charge” type of person to feel they are not in control of their own destiny. Resentment of the caregiver sometimes develops. Unconsciously they drive away the very people they need the most because they are so afraid of needing anyone.
When people become ill, they also become frightened. Fear is not a comfortable feeling for anyone. Unconsciously they move toward anger. Anger is much more comfortable, it can be outwardly directed, whereas
fear is internal. Focusing on external things and getting angry about this and that is a common coping mechanism with people who are grieving.
Sometimes, just being aware of these psychological dynamics can help. Remind yourself not to take it personally, though it sure feels personal at the time.
Meanwhile, work on setting boundaries with her. Agree to talk once a day, no more. You can love your mother, but you don’t have to love her behavior. Just because someone is sick, or old, or is your mother, does not justify abusive behavior.
I suggest making an hourly appointment every day for yourself. Just as you would a doctor’s appointment, or work appointment. And keep it! I know this sounds difficult, but you have a right to your life too. I’m going to say that again: You have a right to your life!
Also, consider talking to your Mother’s physician, and explore palliative care or hospice care. Hospice provides counseling, a visiting nurse, volunteer services and more. Mom might resist at first, but she might also enjoy the attention, and the staff would work with you on strategies for coping with your mother and with the stress of caring for a difficult parent. You don’t have to do this alone.
Caregiving
Adult Children Not Helping
Question: Is there an article that I can send to my adult children to let them know the stresses, loneliness, and lows that caregivers experience daily? My husband had a stroke two years ago at age 57, and I am worn out from trying to be super-caregiver. I ask for help, but I am not worked into my daughter's busy schedule (she does not work outside the home but home-schools). Must you have an emotional breakdown for adult children to understand the pressures of this responsibility?
Don Rehwaldt (Enclara Health Hospice Nurse) Answers: Thank you for your question. First off, I want to validate the fact that caregiving can be an extremely stressful and challenging role. Most caregivers will tell you that
it involves enormous sacrifice, devotion, and 24/7 responsibility. It is not uncommon to feel isolated and alone in this responsibility.
Adult children and friends may not be aware of your needs. They may not feel competent to provide assistance and they may feel that by offering to help they are questioning your abilities. Fortunately, there are resources available to help you better communicate your needs. For starters, you could read these CareCommunity articles and share them with your adult children.
You also might consider creating a Private Care Page on this website (you’ll find this on the left column under Quick Links for Registered Users). The website will show you how to invite your adult children (as well as other family members and friends) to become a member of your Private Care Team. This private web page lets you write updates on your husband’s condition as well as post a list of specific tasks you need help with, such as respite care or picking up a prescription. Some people find the Private Care Page to be an easier way to request and offer support and assistance. For instance, your daughter may want to help, but she’d prefer to choose from a list of tasks, so it’s more convenient and manageable for her.
Even if you don’t create a Private Care Page, you can at least make a list of tasks that you need help with and post it on your refrigerator. This way, if a friend (or maybe one of your adult children) ever says, “Is there anything I can do to help?” you can look at your list of tasks and say, “As a matter of fact there is…”
Also, respite care may be available in your community. One way to determine this would be to contact your local Area Agency on Aging. Their mission is to assist all elderly Americans. The website that would have your local resource is located on the lower left side of this web page:
Enter your data and your location, and it will give you the contact information for your area. If you feel more comfortable using your telephone, you can call toll-free at 1-800-677-1116 to get information regarding resources and services in your area.
As you can see, you don’t have to have an emotional breakdown to get help or communicate your needs. We want to support you and help you avoid having an emotional breakdown if at all possible. If you feel emotionally unable to handle the stress you are under, talking over your needs with your spiritual adviser or your physician might be a good idea.
End-of-Life Care
What are Comfort Measures?Question: My doctor told me that at this point in my father’s disease he would be best off with comfort measures. What are comfort measures?
Dr. Michelle Reisner: “Comfort measures” are intended to provide comfort to a patient and not prolong the dying process. When physicians are caring for dying patients we want them to be comfortable and not in any pain. Physicians and the Palliative care multidisciplinary team’s goal is to treat any symptoms the patient may be experiencing such as pain, restlessness, nausea, vomiting, shortness of breath and muscle spasm. We also do not want any unnecessary procedures to be done that are of no benefit to the overall management of the patient.
Therefore, comfort measures include pain medications, oxygen, and good nursing care. Comfort measures also include emotional and spiritual support to the patient and family.
Consider the words of Dame Cecily Saunders, one of the pioneers of the hospice movement. She said, “You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die.”
Should My Mother Have a Feeding Tube?
Question: My mother has Alzheimer’s disease. She has had it for at least nine years. I am heartbroken when I visit her in the nursing home. She is just lying in bed and does not even recognize me. Her physician states she is no longer eating and is losing weight.
I am so torn between leaving her the way she is, or allowing them to put in a feeding tube. I do not want to starve her. What’s your advice?
Dr. Michelle Reisner: I am sorry you are facing this very difficult decision with your mother. Dementia is a terminal disease and one of the problems in the last stages of the disease is an inability to swallow. Medical reviews of the literature have shown that tube feeding patients in the terminal phase of their disease is not necessarily beneficial. Artificial feeding does not lengthen the life of an end-stage dementia patient and only adds greater burdens.
Patients who are demented with a feeding tube can aspirate. And improving the delivery of nutrients via tube does not reduce infection. A feeding tube is not comfortable and the liquid (diet) going directly into the stomach has no taste and there is no pleasure involved in this kind of feeding. Functional status of the patient has not been improved and demented patients are not more comfortable with tube feeding. Serious adverse effects have been reported.
I often suggest that caregivers consider the following position statement on AHN (artificial hydration and nutrition]) from “The American Academy of Hospice and Palliative Medicine Position Statement.”
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AHN are life sustaining medical therapies with risks and benefits.
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Interventions should be instituted after obtaining informed consent.
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There is no moral or ethical justification for using AHN merely to delay the progression of the natural dying process.
What's a DNR Order?
Question: The last time my mother was admitted into the hospital a nurse asked our family if she had a DNR order. Can you explain this to me? If we agree to have one, does it mean my mom will get less care or attention?
Dr. Michelle Reisner: A
DNR stands for Do Not Resuscitate order. The nurse was asking you whether your mother (or whoever is legally enabled to make medical decisions for her) has decided she shouldn’t receive cardiopulmonary resuscitation (CPR) if her heart stops.
The technique of CPR was originally developed for acute situations such as drowning or electric shock. Within the hospital setting CPR is required for all patients who experience cardiac arrest (which means the heart stops beating and the patient stops breathing), unless there is a DNR order in place. If a patient’s heart stops beating and there is a DNR order in the patient’s medical record then no attempt will be made to resuscitate the heart or the lungs.
If a patient’s prognosis is poor, and a patient is dying from a primary disease or injury, then the physicians, patient, and family may choose to forgo treatments that offer little hope of benefit. When CPR will not result in meaningful recovery or CPR is not appropriate due to the patient’s disease or the patient does not want to be on any “machines" to breathe, then it is usually in the patient’s best interest to sign a DNR order. This decision should be based on the patient’s wishes and on sound medical judgment. A physician’s order not to resuscitate (DNR order) will then be placed in the medical record.
A DNR order does not mean "nothing will be done" if a patient needs care. For instance, pain and symptom control will continue as will antibiotics and intravenous therapy if that is what the physician and family decide to do. It is always difficult to make end of life decisions, which is why honest and caring communication between the physician and patient/family is encouraged.
Community Manager Note: For further information on DNR orders and other advance directives check out the following links.
Visiting a Dying Friend
Question: A friend of mine is terminally ill and bedridden. His wife has encouraged me to visit, but I don’t know what to say or do when visiting someone who is very ill and bedridden. Can you suggest any do’s or don’ts to help me?
It can be hard to know what to say or do when visiting a terminally bedridden friend. You can prepare for your visit by reflecting on what you value about your friendship.
Every friendship is special and unique. That is why it is often so hard to visit and communicate with someone that we care about who is dying, because we are acutely aware that our relationship is coming to an end. Our sense of impending loss can make it difficult for us to maintain our composure and the confidence that we normally feel in the company of our friend.
You might start by asking your friend’s wife if your friend has mentioned any issues or topics that he wants to talk about during your visit. You should be prepared for the possibility that your friend may want to discuss past slights with you and seek your absolution. He may also want to elicit your assistance to bring peace and closure to unresolved issues.
I can offer some suggestions that I have learned personally and professionally:
- Find the strength within yourself to make the visit. Being bedridden and facing a terminal illness can be lonely for the person experiencing the illness. Your presence will be appreciated. Also, realize that your friend knows that this is difficult for you and he will be grateful that you have made the effort.
- You may have difficulty knowing what to say. It helps to listen closely to your friend and determine what is important to him and follow his lead. Most likely, your friend will let you know where he is at, in his dying, and what he wants to discuss.
- Reflecting and reminiscing may be meaningful for you both. Remember, you are friends for a reason and it is often comforting to talk about meaningful events and milestones that you both have shared.
There is only one don’t. Do not let your fears and sense of impending loss keep you away. You don’t want to deprive your friend of your visit, and don’t deprive yourself of this opportunity. Your caring presence and support will be forever appreciated by your friend and his wife. Take this opportunity to visit your friend as you may never have another opportunity to visit again.
As long as your friend is alive you have the opportunity to maintain and nurture your friendship. Let him know how much you care for and value him. Also, when the time is right, let him know how much he will be missed. Finally, offer to visit again if your friend is up for it.
Pharmacy
My Wife Can't Swallow Pills
Question: My wife is getting weaker and is having problems swallowing pills without choking. Is there something we can do besides switching to giving her shots?
Pharmacist Dave Krishna: Having problems swallowing pills is a common occurrence as patients get weaker at the end of life. There are several alternatives to using injectable medications to manage symptoms and conditions. Many medications can be given (under the tongue) or crushed and given with water or apple sauce. It is important to speak with your doctor or pharmacist to understand which medications can be administered in this manner.
As patients lose the ability to swallow, your pharmacist can recommend alternative dosage forms to administer the same or similar medications. These dosage forms are usually compounded and provided as transdermal gels and suppositories. Transdermal gels are commonly applied to the wrists or back of the knees, where they are absorbed through the skin. Suppositories are administered rectally and absorbed accordingly. Many drugs and drug combinations can be prepared in dosage form, including medications for pain, nausea and vomiting, and agitation and anxiety.
Talk with your doctor and pharmacist about which alternative and dosage form will be most effective for your wife’s situation.
How do I Avoid Pharmacy Mistakes?
Question: One time I picked up a prescription for my partner and discovered that the pharmacist had given him the wrong meds. It turned out the pharmacist had misread the doctor’s handwriting. How common is this? And what should I do to make sure I get the right medication?
Pharmacist Dave Krishna: Although pharmacies have many quality checks in place and medication errors are rare, they can occur. It is important to be actively involved in the care of your loved one. Make it a point to ask questions. Have your doctor or nurse explain what medication is being prescribed and why. Understand the dosage and directions. When you pick up the medications at the pharmacy, the pharmacist will review all of this with you during patient counseling. By being actively involved in the process and asking questions of your doctor, nurse, and pharmacist, you will be able to recognize any potential issues with the drug therapy, including a medication error.
Should I Waive My Right to Counsel?
Question: My pharmacist asked me to sign a form waiving my right to counsel. Is this legal? Does this mean she doesn’t have to discuss the prescription with me?
Pharmacist Dave Krishna: By law, you have the right to medication counseling when picking up your prescriptions. Regulations vary from state to state, but most if not all states require the pharmacy to obtain your signature if the counseling is not given at the pharmacy. This is called waiving the offer to counsel. If you agree to waive the offer to counsel and sign, the pharmacist does not have to provide the form of counseling required in your state. It is acceptable to do this, especially if you are already familiar with the medication being prescribed. However, it is a good idea to accept the offer to counsel and speak with the pharmacist, especially when beginning new drug therapy. The pharmacist can provide you with valuable information, including what to expect, side effects, and how to take or give the medication. You can also verify that the information and medication given at the pharmacy matches the information given by your doctor or nurse.
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Expert Consultant
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Pharmacist Dave Krishna is Vice President of Pharmacy Operations at Enclara Health.
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Expert Consultant
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Enclara Social Worker Katherine Peterson, LMSW, began her social
work career at Lenox Hill Hospital in NYC as a Medical Social Worker. Kate found herself drawn to working with the elderly and their families; but it wasn’t until she volunteered at a local hospice that she really found her calling. She became a Hospice Social Worker in the early 90’s and found it was her ‘soul’ work.
Kate has studied Jungian psychology, Gestalt psychology and has a certificate in Clinical Training in Mind Body Healing Therapies under Ron Alexander PhD, founder of OpenMind.
In addition to her background in Bereavement, Stress Management and Coping Skills Facilitation, Kate has also been the Director of Social Work for a National Home Care Agency, Director of a Traumatic Brain Injury Program and is a Certified Legal Guardian.
She lives in Long Island New York with her Chihuahua who is ever patient and kind.
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Expert Consultant
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 Enclara Health hospice nurse, Don Rehwaldt, R.N., is certified in Hospice and Palliative Nursing. He has been assisting patients and their families for five years in both case management and administrative roles. |
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Expert Consultant
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 Dr. Michelle Reisner is the Chief Medical Officer of Enclara Health and has a strong interest in end of life care. She is board certified in Internal Medicine, Geriatrics and Hospice and Palliative Care. She is also the director of a geriatric program and heads the palliative care team in a large teaching hospital in New Jersey. |