My 78-year-old husband has been diagnosed with early-stage Alzheimer’s since 3/3/16. It’s been a year since we saw the neurological psychiatrist, but our next appointment is in a week. That has brought a lot of his emotions about living with the disease to the surface, prompting a long and at least temporarily productive conversation. He was worrying about what I might say about his progress during the Dr. visit, but we were able to turn it around and talk about what he would say, because many of the things I had noticed, he had noticed, too, but had been hesitant to talk about. This change centered on him agreeing that it would be more helpful for him to be honest with himself and with the Doctor, rather than denying that anything has changed.
One thing that helped me to steer this conversation in a positive direction was an article I’d read recently on the Alzheimer’s website titled “How Alzheimer’s affects relationships. You can find it here. It contains a little video made by a man who has the disease, and several quotes from others also from that perspective. It emphasizes that the person with Alzheimer’s has a choice as to how they react to and with the people around them, especially their spouse or “partner caregiver.” “Your ability to live well with Alzheimer’s depends on how you choose to continue to be a partner in your relationships.”
In our relationship, I think both of us tend to swing back and forth when it comes to looking at living with the disease through our own eyes and experiences or through the eyes of our partner. I’m certain we will be having a similar conversation in the future, but at least we have cleared the air for the present, and hopefully long enough to get us through my husband’s annual evaluation unscathed.
Tips from the Article
I encourage you to read the article and watch the short video, whether you are the person who has Alzheimer’s, a spouse or another caregiver. I’ll touch on some of the main points here, with the hope that they will have a positive effect on a relationship in your life, whether it’s you or someone you care for who has an Alzheimer’s diagnosis.
Remember that your loved one is still the same person he/she was before the diagnosis.
Even though you may be uncertain about how to respond to your new circumstances at first, maintaining a meaningful relationship throughout your experience with Alzheimer’s can help both parties stay physically and emotionally healthy.
Your loved one may find it increasingly difficult to participate in social activities or interactions that were once enjoyable for both of you. Recognize that anxiety, frustration or loss are common emotions that may come with changes in the ability to follow a conversation, stay focused with competing background noise, or have enough energy to participate in social activities. Do what you can to stay active and socially involved, even if the nature of the activities has to change.
Expect and accept role changes.
As your partner’s abilities change, there will be changes in both of your roles and responsibilities. Here are just a few roles that may have to change over time:
- You may have to do most of the planning and decision making, especially about financial matters.
- Specific functions that were once your spouse’s responsibility may have to be assumed by you. “The hardest thing that I’ve had to overcome is realizing a lot of what I used to do has been passed on to my wife.” Person living with Alzheimer’s
- You may have to do all or most of the driving.
- If your spouse was still employed, you may have to assume the role of bread-winner.
Even though you may have good intentions, you will have to take care not to provide help that feels invasive or is unnecessary.
For the person with Alzheimer’s, it can be difficult to do, but adapting to changes and accepting help from others can be a way to acknowledge the value their assistance brings to your life. The more you can be involved, the fewer negative feelings you may have.
Ways to keep your relationships positive and productive.
- Be open about your feelings. Share your experiences and feelings about living with the disease, both as the patient or the caregiver.
- Be specific about how you would like to continue your relationship and how you would like to be treated.
- Learn how to ask for help. While it may seem like a sign of weakness at first, asking for help when you need it may help you maintain your independence and remain in control.
- Focus on relationships that are supportive, and show your gratitude for the people you love and appreciate.
- See yourself as unique and human, and continue to do things that feed your sense of self.
- Uncertainty, frustration or reduced confidence may lead to stress and changes in feelings toward your partner. Your partner may experience some of these same feelings. Both of you will need to make adjustments.
Tips from people with Alzheimer’s
- Remember that your care partner or others close to you did not ask to be put in this situation either. They have fears and frustrations, too. Working together may make the situation much better.
- If longtime friends shy away, remember your best and real friends will stay with you, Invest your time and energy in them.
- When you feel a loss of equality in a relationship, let the other person know what he or she did and how it made you feel.
When it comes to relationships, it’s important to consider feelings on both sides. The Alzheimer’s Association and other groups provide counseling that can help. Support groups consisting of others in your situation can also provide a release for emotions and ideas of how to make your life-path easier.
by Marti Lythgoe, Dakota Home Care, Writer/Editor
When loved ones die, we expect family members, especially those who were their caregivers, to go through a grieving process. Because professional caregivers are paid for what they do, we don’t always realize that they may have a similar need to process their grief when a client dies or leaves their care for some other reason. As home caregivers and families who employ them, it’s important to acknowledge this grief and find ways to deal with it. Otherwise, it could build up to the point of “bereavement overload,” or the effect of multiple losses with little time in between for a grieving process. In one study of professional caregivers in a long-term care program, 72 percent of the caregivers were experiencing grief symptoms.
The New York Times highlighted this issue in their article On Home Aides and Hidden Grief. Professional caregivers often build a strong relationship with clients, as they work with them over time. This is one of the great things about working as a home caregiver. Though the relationship is a professional one, it is normal to have feelings of attachment. Families want to hire caregivers who will treat their elderly clients like family. That sort of intimacy means that caregivers, too, will ache when the people they’ve grown close to are no longer in their care.
There need not be a death for a caregiver to experience grief. “Anticipatory grief” begins before the person has died, but the emotions—anxiety, anger, dread, sadness—can be similar. When a family member of a client who has an injury, condition or disease like Alzheimer’s that progressively changes their personality, the grief may come from realizing that the person, as they knew them, will be “gone” even before they die.
Family caregivers may also feel loss of their independence and freedom, as much of their time and energy is now going to someone else who needs them. It is normal to feel guilt, anger, bitterness and resentment as one comes to terms with the fact that you can’t change the outcome of the disease and that the life you had won’t be coming back.
Sometimes a caregiver feels a sense of relief when a client dies. They’ve witnessed the struggle and discomfort their client suffered. Positive grief is not the only result of an anticipated death. In fact, it has been noted that 10-20 percent of caregivers experience high stress, while 30 percent are at high risk of clinical depression when their client passes. Caregivers can experience “complicated grief” that has an abnormal reaction time, is suppressed or postponed. In fact, for 20 percent of caregivers, this occurs a year after the death.
Characteristics of professional grief include:
- The effects of are hidden and subtle
- Professional losses accumulate
- It may appear as other emotions such as anger, anxiety, blame, helplessness, and guilt
- It may have a chronic or delayed response — one that never comes to a satisfactory conclusion
- It is a significant cause of caregiver burnout.
Grief and Caregiver Burnout
When grief-producing experiences are layered one on top of another and there is no release for emotions, caregiver burnout can be the result. Symptoms of caregiver burnout can include:
- Withdrawal from friends & family
- Loss of interest in activities
- Feeling sad, irritable, angry, hopeless, anxious
- Change in appetite, weight, sleep
- Exhaustion, both physical/emotional
Relieving Grief that Leads to Caregiver Burnout
- Be open and honest about your feelings. With a support group, a counselor, a good friend, or in a journal, share what you’re going through. It’s OK to cry or admit that you’re angry or frustrated.
- Learn more about your client/loved one’s condition: symptoms, treatment options, progression.
- Make time for yourself and for “normal” activities.
- Reach out to friends and family members and ask for their help.
- Find new activities to share with the “new” person your client/loved one is becoming.
- Take time to talk to colleagues or friends about the person you cared for and what you miss about him/her. You won’t breach client confidentiality if you don’t mention names or specifics.
- Find someone you trust to talk to. Attend a grief support group; see Griefnet or org for options.
- Be conscious of your body and what’s going on in your life; breathe, sleep, eat right, exercise.
- Take advantage of respite care; take a break.
Dakota Home Care now offers “Comfort Care,” an extension of or addition to hospice care. If your loved one needs more than the one or two visits a day provided by hospice, Dakota Home Care can provide comfort-care-trained CNA’s to provide the additional support and care that may be needed—up to 24 hrs. per day. They are specifically trained to work with the hospice agency as well as provide personal care, emotional support and medication administration. Our Comfort Care staff members meet regularly for a “lunch and learn,” where they openly share their feelings about clients, have a chance to debrief after a death, and to learn and receive support from experts.
If you would like to learn more about Comfort Care, call us today at 701.663.5373 for a free consultation regarding how we can help with your loved one’s needs.
- Journal of Pain and Symptom Management, September 2005
- “Understanding Professional Grief“
- Institute for Professional Care Education Webinar: “Managing Caregiver Grief,” with Joann@ouch-its-grief.com
Experts estimate that specialized physicians now have the tools to diagnose Alzheimer’s disease with more than 90 percent accuracy. That fact sent me in search of data on symptoms, and when and in what order they are likely to occur after diagnosis. About 15 months ago, my husband was diagnosed with Alzheimer’s, and I continue to struggle with 1) what about his behavior is symptomatic of the disease, 2) if what I observe will be consistent behavior (Can I count on what he can and cannot do all the time), and 3) what might be just normal aging behavior for someone his age (78).
The short answer: Well….it appears that the short answer to all 3 of my dilemmas is “You can’t be sure.” Because Alzheimer’s affects people in different ways, each person will experience symptoms – or progress through Alzheimer’s stages – differently. Even the definition of “stages” seems a little vague. Some sources listed 3 stages of progression through the disease, while others came up with 7. And even then the reader is warned that symptoms might overlap or even not occur in that particular order. While designating Stages of Alzheimer’s can give a general forecast of what to expect, progression varies greatly from person to person and a division into Stages only provides a general guide.
Another challenge: People with possible warning signs of Alzheimer’s may find it hard to recognize they have a problem and may resist following up on their symptoms. Signs of dementia may be more obvious to family members or friends. And memory loss might not be the first symptom that shows up. My husband’s earliest and most consistent symptoms involve what some experts call “executive function,” or the lack of ability to process a string of instructions or to initiate and plan activities. The neurologist who evaluated his tests confirmed that my observations in these areas were correct.
Progression in 3 stages: The Alzheimer’s Association Website favors describing a 3-stage slow progression for the disease: mild (early-stage), moderate (middle-stage), and severe (late-stage). symptoms are listed. But what I found most helpful and descriptive of my own observations so far is their chart titled “10 Early Signs and Symptoms of Alzheimer’s.” Click on the link to find descriptions and “typical age-related changes” for each of these 10 symptoms:
- Memory loss that disrupts daily life
- Challenges in planning or solving problems
- Difficulty completing familiar tasks at home, at work or at leisure
- Confusion with time or place
- Trouble understanding visual images and spatial relationships
- New problems with words in speaking or writing
- Misplacing things and losing the ability to retrace steps
- Decreased or poor judgment
- Withdrawal from work or social activities
- Changes in mood and personality
Divided into the 3 stages, these are the common symptoms noted by the Alzheimer’s Association:
1) Mild Alzheimer’s disease (early-stage) (Once source said that there is also a stage when Alzheimer’s is developing but no symptoms are yet manifested.)
- Problems coming up with the right word or name
- Trouble remembering names when introduced to new people
- Challenges performing tasks in social or work settings.
- Forgetting material that one has just read
- Losing or misplacing a valuable object
- Increasing trouble with planning or organizing
2) Moderate Alzheimer’s disease (middle-stage) (Typically the longest stage that can last for many years)
- Forgetfulness of events or about one’s own personal history
- Feeling moody or withdrawn, especially in socially or mentally challenging situations
- Being unable to recall their own address or telephone number or the high school or college from which they graduated
- Confusion about where they are or what day it is
- The need for help choosing proper clothing for the season or the occasion
- Trouble controlling bladder and bowels in some individuals
- Changes in sleep patterns, such as sleeping during the day and becoming restless at night
- An increased risk of wandering and becoming lost
- Personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand-wringing or tissue shredding
3) Severe Alzheimer’s disease (late-stage)
- Need round-the-clock assistance with daily activities and personal care
- Lose awareness of recent experiences as well as of their surroundings
- Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow
- Have increasing difficulty communicating
- Become vulnerable to infections, especially pneumonia
At least with an early diagnosis, my husband and I and our family can plan for the future, however uncertain its course may be. The day of his diagnosis, we met with a family counselor in the U. of U. Neurology Dept. She advised me that, “Even though it’s not fair, you are the only one who can change. Ultimately, it’s better to be happy together than to be right.” I took this to mean that whether his changing behavior is a symptom of Alzheimer’s or just part of normal aging, it will ultimately be better for both of us if I can react with patience and understanding…or not react at all.
by Marti Lythgoe, DTN Travel Nurse Editor/Writer
Since my husband was diagnosed with Alzheimer’s and vascular dementia in April of 2016, one difficult thing about it has been knowing what to say to our children and grandchildren. We followed the neurologists’ instruction to immediately tell our grown children about the diagnosis, but we haven’t yet taken them up on their strong suggestion that we get our five children and their spouses together with one of their experts for “Family Counseling.” With four sons whose wives also work and a daughter in VA who would have to be Skyped in, it seems impossible to coordinate schedules. We’ll have to try harder!
That was brought home to me today when I went to lunch with a son who asked questions that I didn’t know how to answer. In the beginning stages, it’s normal for symptomatic behavior to come and go, so some things I notice aren’t noticed by family members who don’t see him very often and some are. I don’t want to paint a picture of his behavior that’s darker or more positive than reality, but sometimes I’m not sure what reality is.
Caregiver Support Group
In my church congregation, there are quite a few women who are either caring for aging parents or spouses with dementia. Inspired by the Alzheimer’s Association, I started an informal “Caregivers’ Support Group” that meets in my home once a month. Last month, one of the women brought in a children’s book titled, Wilford Gordon McDonald Partridge, by Julie Vivas. She read it aloud to us and brought most of us to tears. I already had What’s Happening to Grandpa? By Maria Shriver. That sent us on a search of other books for children or young adults that could answer questions about dementia in a tender, non-clinical way. Everyone there agreed it was a good idea to blog about this perhaps under-used resource.
4 Children’s Books about Dementia – Brief Summaries
Wilfrid Gordon McDonald Partridge, written by Mem Fox and illustrated by Julie Vivas (Paperback, 1989)
Wilfrid, a young boy, lives next door to a nursing home where he loves to visit 96-year-old Miss Nancy Alison Delacourt Cooper. She’s his “favorite friend” there because she has four names, just like he does. When he learns that she has “lost her memory,” he asks other residents what a memory is. Their answers prompt him to gather up “memories” of his own to give to her. While handling Wilfrid’s “memories,” Nancy finds and shares some of her own. In a way that is not-at-all patronizing, Mem Fox shows us how children and adults can help the elderly remember things. [This book is my favorite so far.]
What’s Happening to Grandpa? Written by Maria Shriver and illustrated by Sandra Speidel (Hardcover, 2004)
Ms. Shriver’s book focuses a little more on educating both children and adults about the symptoms of the Alzheimer’s form of dementia. She first draws in her readers by helping us get to know Kate and her Grandma and Grandpa before Kate notices that her Grandpa is changing in ways she doesn’t understand. Kate asks and gets answers to her many questions about her grandpa, but she also resolves to find a way to share and preserve her grandpa’s memories and her memories of him. Ms. Shriver says, “My hope is that this book will inspire children to find creative ways to keep [their grandparents’] stories alive, and that readers of all ages will realize how important it is to cherish the lives, love and memories of our grandparents—now and forever.”
Weeds in Nana’s Garden, written and illustrated by Kathryn Harrison (Paperback, 2016)
In this colorfully illustrated book, the first thing a young girl notices is not quite right is that her Nana has let weeds grow in her usually well-kept garden. Her mom helps to explain Alzheimer’s by comparing it to a tangle of weeds in Nana’s brain that get in the way of her thoughts and memories, while reminding her that “Nana is still Nana underneath.” The story gives examples of the progression of the disease, including Nana not being able to remember her granddaughter’s name, even though she still remembers the names of the flowers and the songs they sing together. At the end of the story there are two pages of “Answers to Questions from Kids.” For every book purchased, $1.00 goes to the Alzheimer Society of Canada.
When My Grammy Forgets, I remember: A Child’s Perspective on Dementia, written by Toby Haberkorn and illustrated by Heather Varkarotas (Paperback, 2015)
Inspired by her own family’s experiences with her mother’s dementia, this author uses half of the book just describing things a young girl’s Grammy used to be able to do, then without a transition, the girl begins describing things her Grammy does that seem a little strange. Perhaps the most beneficial message comes when the girl asks her mom “Does Grammy still love me?” Her mom replies, “Yes, she will always love you.” There is a bit of a role reversal as the girl reads to her Grammy, guides her on walks and tries to make her smile. Every page ends with “I hug my Grammy tight.” Of the four, I think this book is the least valuable, but it also includes some symptoms of dementia not mentioned in the others.
These books and others can be ordered online. Search for other titles on Amazon.com and alz.org. With 13 grandchildren ages 1-24, I plan to add to my collection of books about dementia for children and young adults. The four books I’ve summarized here are just a taste of what’s available!
by Marti Lythgoe, DTN Home Care Writer/Editor
Other books and movies from Alzheimer’s.org and Amazon
The first consideration when moving a loved one with dementia into your home, or even if they’re just coming to visit, is often how to make it safer, for example, how to decrease the risk of falling. Once you’ve overcome that hurdle as best you can, your focus can shift to how to make your home a more comfortable and calming place, with less risk of agitation.
There are many forms and stages of dementia. If you have the objectives of comfort, calm and ease of care in mind, you can adjust the following suggestions to what will doubtless be an ever-changing situation as your loved one’s dementia progresses. Try the things you think will work for you and your family member now, and vary your solutions as needed.
Reduce stimuli in the person’s environment:
- Declutter your home. A simplified environment with clutter-free surfaces is more conducive to keeping emotions on an even keel, and the reduced confusion caused by removing clutter will help everyone in the family.
- Eliminate unnecessary noise. Sensory overload can cause distress. The goal of a peaceful atmosphere that will keep your family member calm and unruffled can often be achieved without the noise of a television, or the sounds from things like wind chimes or dogs or the sounds of traffic. For sounds that can’t be eliminated, a white-noise machine might help to mask them. Carpets, cushions and curtains absorb background noise.
- Playing music from your loved one’s past may actually be calming and help to stimulate memories associated with it. Try creating a playlist from the era when your loved one was young, and have them listen to it through ear phones.
- Adjust the light. Eliminate annoying glare from the windows, while letting in as much natural light as possible. A light-related challenge is the phenomenon known as “sundowning.” When the sun sets, it may prompt feelings of depression, anxiety and even hallucinations in those with dementia. Toward the end of the day, increased artificial light can actually help minimize the effects of sundowning. Put a few lights on a timer to eliminate the need for to remember to turn them on. This also keeps changes in light more consistent from day to day. Leaving a nightlight on can help prevent disorientation and the risk of falling in the dark.
Provide a personalized indoor space. Give your loved one their own place to sit and doze. A recliner, comfortable chair with an ottoman, or a couch where the person can settle in on each visit will help them to feel more comfortable and at home. Try to make this special seating area out of the way of household hustle and bustle, yet still within view. That way, your family member can relax and not be in the way, but you can keep an eye out and ensure his or her safety.
It’s handy to have a side table nearby where you can place an item or two to keep your loved one occupied. Each person will enjoy different things—books, photo albums, telephone. Try various items but don’t overload the person with too much stuff. Keep the space clutter-free.
Provide a safe outdoor space. When the weather is good, your loved one will enjoy the fresh air, the sounds of birds, the sight of flowers and trees, the warm sun and maybe a little exercise. Bird feeders may attract birds that are enjoyable to watch. Enclose the area if your loved one is a flight risk. Partial sun or shade is preferable to full sun. A chair under a tree or an umbrella can help to control the brightness of the light. You might want to set a timer so you don’t leave him or her out there too long.
Adjust flooring where possible.
- Remove unnecessary rugs.Besides being a tripping hazard, rugs can cause confusion and anxiety. A person with dementia may see a rug as a hole and try to walk around it or jump over it, or may simply freeze, not knowing what to do. A necessary rug should have a low color contrast with the floor.
- When replacing the carpet, install the same color throughout the house, to lessen confusion.
- Avoid shiny or reflective flooring. It may be perceived as wet or slippery, and the person may be afraid to walk over it.
Remove nearby mirrors and cover reflective surfaces. If the person you care for doesn’t recognize their own reflection, they may think that the face in the mirror or the person reflected in the window at night is a stranger and be frightened.
Label drawers, cupboards and doors to show what’s inside them. For example, you could put a photo of the toilet on the bathroom door, a photo of a glass on the cupboard, or the word “spoons” on the drawer that contains the silverware. Transparent cupboard doors can be a great help as it’s easy to see what’s inside.
Purchase household items that are specifically designed for people with dementia. Cups with two handles, clocks with large LCD displays, telephones with big buttons and devices to open jars are examples. There are several websites that sell daily living aids, such as the Alzheimer’s Society online shop.
Be sure tables are stable and have round, smooth edges. The height should permit food and drink to be seen easily and a wheelchair to fit underneath, if needed.
Keep a change of clothes handy. Have one drawer for this purpose with at least one pair of pants and two or three pairs of underwear. A clean shirt or blouse may also help to prevent embarrassment when an accident or spill occurs.
Stimulate memories through pictures. If you have family photos on display in your home, don’t put them away until you see how they affect your loved one. If you don’t have pictures up, think about creating a grouping of pictures someplace where they can be enjoyed together. Creating photo albums or scrapbooks that you can look at together and talk about can also be enjoyable, even if your loved one doesn’t remember the people or places in them. Take photos of you and your parent to help you remember the special times you had together.
Monitor personal comfort. Because a person with dementia might not always be able to express how they feel, check for pain, hunger, thirst, constipation, full bladder, fatigue, infections and skin irritation. Make sure the room is at a comfortable temperature. Be sensitive to fears and to the frustration of not being able to express what is wanted.
Try to keep your emotions in check and your voice calm and steady. Avoid arguing, correcting or criticizing. It’s better to be happy than to be right!
Research has shown that hospital pre-discharge planning that includes the help of families and caregivers can dramatically improve patients’ health, reduce readmissions and decrease healthcare costs. Whether the discharge is to home, a rehab facility, assisted living or a nursing home, patients, family caregivers and healthcare providers all play a significant role in maintaining a patient’s health after discharge. Unfortunately, the process and quality of discharge planning are not consistent throughout the healthcare system. If you are a caregiver, you must be the advocate for the patient and for yourself.
Who is responsible for discharge planning?Only a doctor can authorize a patient’s release from the hospital, but the process of discharge planning can be completed by a social worker, nurse, case manager or other person. The best scenario is when discharge planning involves a team.
The basics of a discharge plan and related discussions include:
- Evaluation of the patient’s condition and likelihood of improvement by qualified personnel
- Discussion with the patient and his caregiver about the types of care and equipment needed
- Planning for transfer to another care facility, or to the home and what help the patient needs
- Determining if family caregiver training or other support is needed
- Referrals to home care agency and/or appropriate support organizations in the community
- Scheduling follow-up appointments or tests before leaving the hospital
- Reconciling pre-hospitalization medications with the post-discharge list for duplications, omissions or harmful side effects, and a discussion of who will administer medications.
Why is all-inclusive pre-discharge planning important?
Pre-discharge planning can decrease the chances that your loved one will be readmitted to the hospital, help in various aspects of recovery, ensure medications are prescribed and given correctly, and help prepare you to take over or get help for all the aspects of your loved one’s care. Patients are released from hospitals “quicker and sicker” than in the past, making it critical to prepare and arrange for good care after release.
The caregiver’s role in the discharge process
As a family caregiver, you are the “expert” on your loved one’s history. You know about the patient and about your own abilities to provide care in a safe home setting. During discharge discussion should include your ability to provide care. You must be upfront about physical and financial limitations, or other obligations such as a job or childcare that determine the time you have available. It is extremely important to tell hospital discharge staff about your limitations.
Some of the care your loved one needs might be quite complicated. Dakota Travel Nurse Home care will come to the hospital and evaluate special care needs, such as medication administration, wound care, post surgical care or catheter care, transferring someone from bed to chair or other needs you will need help with.
If your loved one has memory problems caused by Alzheimer’s disease, stroke, or another disorder, you will need to be a part of all discharge discussions. In addition to impaired memory, older people often have hearing or vision problems or are disoriented when they are in the hospital. Care instructions can be difficult to comprehend. They need you to be a second pair of eyes and ears.
Because people are in a hurry to leave the hospital or facility, it’s easy to forget what to ask. This link includes an extensive list of questions that you can print and take with you.
Help you may need at home
Some common care responsibilities you may have to handle or get help with for your family member after he or she returns home are:
- Personal care: bathing, eating, dressing, toileting
- Healthcare: medication management, physician’s appointments, physical therapy, wound treatment, injections, medical equipment and techniques
- Emotional care: companionship, meaningful activities, conversation.
- Household care: cooking, cleaning, laundry, shopping, other chores
You don’t have to handle all the care yourself! Community organizations and home care agencies like DTN Home Care can help with services such as transportation, meals, support groups, counseling, and respite care. The discharge planner should be familiar with these types of support, but if not, your local senior center or a private case manager could be helpful. Family and friends also might assist you with home care.
If you need to hire paid in-home help, you have some decisions to make. If hiring decisions are made in a hurry during hospital discharge, you might be handed a list of agencies to decide from, but often without additional information. If you know you will need this type of help, make time to research your options while your loved one is being cared for in the hospital.
You may have a choice between hiring an individual directly or going through a home care or home health care agency. If the help is “medically necessary,” i.e., prescribed by the doctor, and therefore paid for by Medicare, Medicaid or other insurance, they could determine covered agencies. Home care agencies take care of all the paperwork for taxes and salary, substitutes will be available if the worker is sick, and you may have access to a broader range of skills.
Discharge to a facility
If the patient requires discharge to a rehab facility or nursing home, transition planning should include continuity of care, patient’s current health and capabilities, medications review, and help selecting a suitable facility with available space. The sooner you can look at facilities and make a decision, the better. Once when my dad was unexpectedly being discharged from a hospital, I was told I had 4 hours to find a place for him and simply handed a list of numbers to call.
There are online sources of information that rate nursing homes and other facilities. Convenience is also a factor. You need to be able to easily get to the facility, but you may have to sacrifice your convenience for the sake of better quality care.
Paying for care after discharge
Insurance, including Medicare, does not pay for all services after a patient has been discharged from the hospital. However, if something is determined by the doctor to be “medically necessary” you may be able to get coverage for certain skilled care or equipment. Check directly with the hospital, your insurer or Medicare to find out what is covered and what you have to pay for. Keep records of your conversations.
Multiple studies have explored the importance of effective discharge planning and transitional care, and have highlighted the very real benefits in improved patient outcomes and lower rehospitalization rates. Dakota Travel Nurse Home Care personnel are qualified and available to be part of your pre-discharge team. Call us to arrange for an in-hospital, in-care-facility or in-home evaluation. You will be pleasantly surprised at the skilled and affordable care we can help to provide for you and your loved one.
I suffered for years from painful bunions on both feet. My podiatrist told me that my bones would heal more quickly if I had surgery before age 65. However, because I was working full-time, I risked it and waited to have surgery on my left foot until I retired at 66 and on my right foot a year later. Although the recovery for each was about 4 months, I would do it all again to walk and stand pain-free, as I do now.
At age 78 and in the early stages of vascular and Alzheimer’s dementia, surgery and anesthesia would be more risky for my husband. His badly deformed right foot would require more complicated surgery with a longer recovery period. I think my success story motivated him to risk the surgery, in spite of opinions pro and con. I felt I was in a no-win situation. If I refused to allow him to have the surgery, I would be responsible for his not having a chance at a more normal foot. If I allowed him to do it knowing about his physical and mental difficulties, I could be responsible for months of inactivity and caregiving that might prove to be useless.
He first tried the less invasive surgery of having his second toe removed. It was being pushed up by his big toe moving under it, and it made wearing almost any shoe uncomfortable. The podiatrist assured us he had done it “hundreds of times” with great success. The surgery was performed with local anesthetic in an out-patient setting. At first, it seemed to solve the problem, but then his big toe began to move over even farther. He went to a second podiatrist who was willing to try extensive bunion surgery.
It is common for people with dementia to not be aware of what they can’t do or are unable to figure out. My husband had already been through 2 rounds of physical therapy for balance and walking problems related to his cognitive challenges and the idiopathic neuropathy in his feet. I knew he could not balance on one foot, and that post-surgery, following non-weight-bearing instructions would be difficult for him.
As someone who had been through it, and as the person who would be his primary caregiver, I told him he needed to prove to me that he could move from bed to bathroom or chair using a scooter and/or walker during the 6-8 weeks of non-weight bearing the Dr. prescribed. I begged him to practice his balance and strengthen his left foot, to no avail. He was sure he would be able to do what was required after the surgery.
Our situation is not that unusual. The caregivers at DTN Homecare have had clients with a variety of wounds or surgeries who do not or cannot follow physicians’ orders so they can heal properly. What to do?
If surgery is not optional or a wound is the result of an accident, a caregiver has no choice but to try everything possible to encourage and enable the injured person to follow the prescribed recovery instructions. The physical therapist neighbor who I called in a panic the evening after the surgery showed me by example that praise for what is done right often has better results than criticizing what is done wrong. He also said that people with cognitive difficulties learn slowly by repetition. I wondered aloud how repetition could work when I couldn’t get my husband to make the correct moves even once!
If surgery is optional, seek multiple opinions, weigh the risks against the benefits, and learn from my experience with my husband, where applicable.
Another complication was my husband’s neuropathy. Until after the surgery, we did not realize how far it had progressed. He felt no pain! He didn’t take one pain pill after the surgery, when most people experience throbbing, stabbing pain for at least 2-3 days. What at first seemed like a blessing contributed to his difficulty in keeping weight off of his foot. He couldn’t use pain as a guide as to when he was putting weight on his foot or even to know when he had his weight on the toe or the heel of the boot. Because of his cognitive problems, every time he moved from one place to another, it was like he was doing it for the first time, trying to figure out how to use the walker or the scooter without putting weight on his bad foot.
The results of being unable to follow instructions showed up quickly. When we saw the Dr. after 2 weeks to have his stitches removed, my husband’s big toe was already moving back to where it had been before surgery. The doctor showed me how to wrap his foot and toe in an Ace bandage so it would pull the toe more toward a straight-up position. This also proved to be a setback. The bandage rubbed on the toe at its base, but my husband couldn’t feel it. One day as I was helping him shower, I noticed that his surgical sock was wet. I removed the Ace bandage and was horrified to find a blister about one-half inch wide all around the base of his toe. In some places the skin had already been rubbed off and the wound was raw and weeping! I immediately called the Doctor’s office, and they said to come right in. The Dr. removed the rest of the skin and the nurse showed me a 7-step process to dress the wound that had to be done every day!
Neuropathy causes nerve damage that can also affect the length of time it takes wounds to heal. Our next visit, when the first X-rays were to be taken, was already scheduled in 2 weeks (6 weeks out from surgery). After two weeks, the wound around my husband’s toe was only partially healed, but it didn’t hurt, either. I was instructed to continue changing the dressing daily.
The X-rays showed that, in spite of the plate and the screws in his foot, the big toe bones were close to being in almost the same position as before surgery. The Doctor said the cause was two-fold: 1) the lack of the second toe provided space for the big toe to move, and 2) my husband’s inability to keep his weight off of his foot. He advised that nothing more be done, as the results would likely be the same unless his big toe were to be fused, making walking more difficult.
At the end of the 6-week visit, the doctor gave us a page of instructions as to how to gradually increase weight-bearing over the 4-week period before our next visit. Again, because putting full weight on his foot didn’t cause him any pain, after one week, my husband was walking around the house without a walker or a cane to help keep any of the weight off of his foot. It didn’t matter what I said, or how I demonstrated the right way to follow the instructions, he couldn’t do it and/or didn’t feel the need.
At 10 weeks, we saw the Dr. again. New X-rays looked about the same as the ones 4 weeks previous. The Dr. was not happy with the results and neither were we, but he did not advise any more surgery unless the foot developed friction sores or other extreme discomfort. We’ll have to keep an eye on it, because he probably won’t feel his shoe rubbing on his foot, just like he didn’t feel the Ace bandage. He was told he could go without the boot and wear a regular sneaker with an arch support insert. I was given new instructions for caring for the wound that still hasn’t healed. PT was prescribed to reteach walking in the correct way for balance and strength building. We’re not done yet. If we could go back, would we do it again? NO!
You can’t force a person with cognitive dementia to follow post-surgical or post-injury instructions that require planning and “problem solving before movement,” even if you are with your loved one or client almost every minute. Constant nagging is a waste of emotional energy. An in-home physical therapist might be able to help, if you can qualify or pay for one. Dakota Travel Nurse Home Care will give your loved one an in-home evaluation to see what types of help you need and/or qualify for.
In Part I of this blog, I gave a brief review of what took place during the last 6 weeks of my dad’s life and included a list of some things that can be done to make the last stages of a loved one’s life easier for caregivers, family members and the person who is nearing the end of his or her life. In Part II, I’ll review what I and my siblings have gone through in the almost 3 months since Dad died on Jan. 4 at age 97.
Mom died 20 years ago. We were happy with the mortuary that took care of her, so the first task upon arriving at Dad’s senior living apartment late that snowing night was to call them. They said they would be there within an hour, and they were. While waiting, we began notifying other family members.
Note: An important thing to be aware of is what the laws of your state are and the policies of the care center–if you are using one–regarding authenticating a death by natural causes. In Utah, where I live, if Dad had not been on hospice care with a Dr. assigned to him, the center would have had to call 911 and have paramedics take him to the hospital so a doctor there could verify that they were not in any way responsible for his death. This was one reason we were repeatedly encouraged to put him on hospice. That would not have been true had he died in his own home.
The Funeral or Memorial Service
The following day, immediate family members in the area met at the mortuary to discuss our plans for Dad’s care and services. They had determined the night before that we wanted embalming to be part of that care. (The family needs to have agreed before a loved one dies whether the choice is embalming or cremation.) I was relieved to find out that the mortuary notifies Social Security of a death and also orders death certificates. Whoever is handling the estate should have some idea of how many to order, as there is a charge for each one. Other things discussed were:
- The date, time and location for a wake/viewing and funeral.
- Who would provide program information, formatting and printing for the funeral.
- If an obituary was to appear in the paper &/or online and when. The obituary could be written and agreed upon by family in advance of a loved one’s death.
- If there would be graveside services.
- Because Dad was a Veteran, if we wanted military honors to be part of the services (a flag draped over the casket, members of the armed services to be at the graveside, etc. We couldn’t find Dad’s WWII discharge papers, so a flag was our only option.)
- Our choice of a casket (also something that can be done ahead of time) and a headstone. (Because Mom preceded Dad in death, we already had a headstone in place. His death date just had to be added).
Depending on your religious and family traditions, other things might need to be decided, like who will participate in the funeral, be pallbearers, etc. Dad had made some funeral plans years ago, but not all of them could be carried out. All 9 siblings were involved in those decisions, which became a little tricky at times, but fortunately, everyone agreed that when they were over, Dad’s viewing, funeral (church service) and graveside service were everything they’d hoped.
After the services, came the tough decisions regarding what to do with Dad’s possessions and monetary assets. The first thing we had to do was to move his furniture and belongings out of his care center apartment so that rent charges would end. There were also many possessions still in the condo he had shared with his wife but left behind when he moved to the care center. Fortunately, everyone agreed to a random order of selection that gave each sibling a chance to take turns choosing the things they &/or their children wanted. The things no one wanted were donated to charity. We did not have a home to sell.
Because Dad had set up a family trust with me and one of my brothers as the trustees/executors of the estate, and he also had a Prenuptial Agreement with his third wife and a Will, some things went more smoothly than they might have. I had been handling all of Dad’s finances for some time, and had consolidated his accounts and assets as much as possible. We are still relying on the help of our investment counselor and the accountant who has prepared Dad’s taxes over the years. It may be necessary for you to involve an attorney, as well, depending on your family’s situation. Even though Dad only lived for 4 days of 2017, his Social Security and annuity payments for January were still considered “his.” We will have to file State, Federal and Estate returns for 2017, so some of his assets have to be held back to pay taxes and administrative and accounting fees. As a family, we are so fortunate that Dad left us with an inheritance rather than debts. That would involve another set of challenges.
Last week I finally got all of the required tax forms and information for 2016 to the accountant. We’ve distributed most of the monetary assets, making a distinction to the beneficiaries as to what amounts will be taxable and what will not, so money can be set aside by those individuals to pay taxes as their tax bracket dictates. There will still be a meeting with the accountant notifying him to whom the assets were distributed, so he can file K-1 (Estate Tax) forms for each one at the end of this tax year, and so 2017 tax forms can be completed as needed. I still have thank you notes to write and mailing addresses to change. Other than that, we are left with just the many memories of our Dad, the long life he lived and the hope and faith that we will all see him again when it is our turn to pass on.
Summary: (Do as much as you can before your loved one dies.)
- Select/Call the mortuary of your choice.
- If a Dr. is not present, know the laws of your state for authenticating the cause of death.
- Meet with the mortuary to plan services and burial/cremation, order death certificates, verify Vet status, select a casket and headstone where applicable.
- Write an obituary and arrange for publication or posting on a website.
- Plan funeral/memorial/graveside services.
- Find important documents: trust, will, POA, living will, life insurance policies, annuities, etc. (Where possible, help your loved one get their affairs in order and these documents created/located while they can still participate!)
- Devise a system for amicably dividing up possessions between family members.
- Use professional help, as needed, for handling monetary assets/debts and tax issues (financial planner, investment counselor, accountant, attorney).
- Notify the post office and others who will be sending mail to the deceased where to send it now.
My 97-year-old father died on January 4, 2017. If you regularly follow this blog, you already know quite a bit about his struggles to stay alive the past two years. On most days, he soldiered bravely on, saying his goal was to “make it to 100!” But after Thanksgiving, he began a steady decline, making it more and more difficult for him to eat, breathe and get around. He frequently said “I’m done!” and “Just send me to the Other Side.” He also said he knew “We don’t get to choose when we go!”
Knowing he had lost the will to live, and as the family member with the POA over his care, I had some difficult decisions to make. The senior care center where he lived helped me connect with a Dr. who made “house calls” and also worked with a Hospice provider. Once your loved one is on hospice care, a Dr. will be part of the team, but because Hospice would stop Dad’s diabetic care, which he was getting through a home care agency, I put off switching immediately from Home Care to Hospice.
Dad, the doctor and I sat together and updated Dad’s Care Provisions. Dad was adamant that there would be “no more hospitals,” so we added that to DNR and “no extreme measures,” along with a provision for no antibiotics. Dad was highly prone to aspirational pneumonia, which he’d had 7 times, so it was presumed that would be his cause of death. He was aware of what trying to save him from that would involve, and decided that he wanted to die at home. A copy of the provisions was hung on his door, where it would be easily accessible.
I alerted immediate family members to Dad’s steady decline and his wishes, and most of them came to visit with him sometime during the Holidays while he was still alert and able to recognize his 9 children. He was able to be at the home of one of my brothers for Christmas, and we helped fill one of Dad’s last wishes by taking him on 2 drives to see Christmas lights.
The aides and CNAs at the care center were made aware of Dad’s care provisions and failing health, and they increased their surveillance and assistance. Dad was only in pain when he tried to get up and walk, so we refused opioid pain killers for the time being, as we knew they would increase his risk of falling.
On Mon. Jan. 2, I visited Dad at his dinner hour and was told that he had eaten almost nothing all day. He also seemed to be hallucinating, seeing and hearing things that weren’t there. That was a symptom when he’d had pneumonia before. Because he wasn’t eating, insulin for his diabetes was no longer an issue. The next morning I called the hospice nurse and told her we were ready to switch. Before I could get myself over to Dad’s apartment, hospice people were there setting up a hospital bed and arranging for their own oxygen supplier to provide Dad’s 24/7 oxygen.
Although hospice care doesn’t provide medication to effect a cure, they will provide whatever is necessary for comfort care, and oxygen is considered one of those things. The nurse also said that even though he wasn’t in pain, morphine would help to relax his muscles and blood vessels, making it easier for him to breathe. Dad’s breathing became more labored throughout the day, and when the morphine was finally administered, for a while there was a noticeable change for the better. Even though he wasn’t talking, the nurse said he probably could still hear, so we gave family members who couldn’t get there a chance to say goodbye with the phone to his ear.
We were told that Dad could live for several days like this, so when he didn’t seem to be responding at all, we went home that evening to try to get some sleep. We came back the next morning and “sat vigil” all day. By evening, even with the morphine, his breathing was very labored. We were again advised that he could live through the night, and that sometimes a dying person will wait until their loved ones have gone before they let go of this life. Because a snow storm was threatening to make travel impossible, I slowly made my way home up slippery hills. I had just gotten into bed when the Care Center called to say “He’s gone.” I made my way back through the snow, and found the hospice nurse already there. She assured me that I didn’t need to feel bad about not being there at the moment of his passing, that maybe I had to go before he could “go,” too.
I felt more relief than sadness to see that Dad was no longer struggling to breathe, and my religious beliefs helped me to know that he was in a “better place,” freed from his worn out body. However, I know that everyone experiences the death of a loved one and grieving in their own way.
In a future blog, I’ll share my experiences and what I learned about what needs to be done after a loved one dies.
- Update your loved one’s Care Provisions. Put the document where it can be easily seen.
- Ensure a family member has the legal right to make medical decisions for your dying loved one.
- Talk with a Dr. about certifying the need for Hospice or comfort-only care, and decide who you will call. If your loved one has Home Care, that agency might be able to provide Hospice Care.
- Keep family members updated on your loved one’s condition, and when they can visit.
- Allow comfort care, as needed. This is not the time to worry about drug addiction.
- Be aware that refusing to eat and difficulty breathing can be normal end-of-life signs.
- Get a doctor’s confirmation that it’s time to follow the dying person’s last wishes, whether they be to maintain life in any way possible, or to take no extreme measures.
- Even though he or she can’t respond, talk to your loved one. Hearing can be the last sense to go.
- Don’t feel like you have to be there the moment your loved one dies. Sometimes they won’t “leave” until you do.
By Marti Lythgoe, DTN Home Care Writer/Editor