Guide to Caring for a Loved One with Alzheimer’s by Sharon Wagner email@example.com
Alzheimer’s is a devastating diagnosis that millions of families cope with every year. If you have a loved one with this illness, this guide from What To Do About Mama? will offer you some support.
What is Alzheimer’s Disease?
Alzheimer’s disease is a progressive brain disorder that makes up about 60% to 70% of the cases of senile dementia. Alzheimer’s disease affects about 6.2 million Americans aged 65 and older. It can be your grandparent, your cousin, your sibling or even your parent who faces the diagnosis. Eventually, those with Alzheimer’s require around-the-clock care, and for many families, that means taking the loved one into their own home.
Signs of Alzheimer’s disease vary depending on which stage the person is in. As a degenerative brain disorder, symptoms become more severe with time. Here, we’ve separated the stages into three basic tiers: mild, moderate, and severe Alzheimer’s disease.
- With mild Alzheimer’s disease, a person may seem healthy but they begin to show signs of the disorder. Mild Alzheimer’s is characterized by memory loss, poor judgment, consistently getting lost, taking longer to do simple tasks, needing things repeated, losing things, mood disorders, and aggression.
- As the disorder progresses it becomes moderate Alzheimer’s disease. Signs of this stage include increased memory loss and confusion, cognitive difficulties, disorganized thoughts, difficulty coping with things that are new, hallucinations, paranoia, impulsiveness, restlessness, and increased anxiety and aggression. During this stage, the Alzheimer’s patient needs more intensive supervision and care from those around them, but they can typically stay in their homes.
- Severe Alzheimer’s disease makes a person completely dependent on others. They need supervision around the clock and access to emergency medical care. Symptoms include a complete loss of communication ability, seizures, skin infections, loss of bowel and bladder control, trouble swallowing, increased sleeping, weight loss, and grunting.
Caregiving for a Person with Alzheimer’s
As Alzheimer’s disease progresses, the patient requires supervision and assistance for their safety and wellbeing. In the illness’s latest stage, this often means moving the loved one into a skilled nursing facility with a staff that can provide the care they need 24 hours a day. Unfortunately, this care doesn’t come cheaply, with a current average cost of over $7,700 each month. To help cover this expense, many families sell a senior’s home and put the proceeds toward their care. You can get an idea of what your loved one’s home will sell for by looking at its sale price, the size of the mortgage on it, and the taxes and fees for its sale so you can budget for care accordingly.
There is some good news: while those in the severe stage of Alzheimer’s may need to be admitted to an assisted living facility, typically those in the earlier stages can continue living at home as long as a family member or loved one can provide support. There are an estimated 16 million American adults who act as family caregivers for someone with Alzheimer’s disease or other dementia every year. If you find yourself in the position of being one of these millions, it’s important to prepare the home you share for their safety as the disease worsens.
- As mobility becomes an issue, handling steps and stairs becomes more and more difficult for the Alzheimer’s patient. Be sure to keep all their necessities on the first floor and cover inclines with a safety ramp they can safely navigate.
- The bathroom is the most dangerous room in the house. Place toiletries and things they will need in immediate reach, and make sure they’re clearly labeled. Put locks on cabinets and drawers that hold hazardous items like cleaning products or razors. Install grab bars next to the toilet and tub, and consider installing a shower bench to make bathing easier.
- The Alzheimer’s patient needs their own space where they can seek privacy and rest. Set up a comfortable room, preferably with direct access to a private bathroom. Place things they like in the room whether it be photos of loved ones, safe crafts to do, or a television. Remove possibly harmful decor and items, especially things that can shatter if broken. Avoid low furniture they can trip over such as coffee tables and ottomans.
Alzheimer’s is a degenerative brain disorder that affects millions of seniors. As the disease worsens, patients need constant supervision for their wellbeing. While severe Alzheimer’s may necessitate an assisted living facility, during the earlier stages people can generally stay in the comfort of their home with the help of a caregiver. Caregivers provide supervision, security, and emotional support during this difficult time.
Aging in Place or in a Care Facility
Once again, I am drawing upon information from The Caring Generation by Pamela Wilson. I follow this site for two reasons.
- First of all, I find that most of the information Pamela Wilson discusses is also addressed in my book, What to Do about Mama? The Expectations and Realities of Caregiving. The main difference is—what I have written is not culled from the experts, but from my own personal experiences and those of the other 3 dozen or so caregivers who shared their caregiving stories. Pamela also draws from personal experience, but she has elevated her knowledge and involvement to a professional level. So, in general, what she has to say validates, in my mind, the substance of my book.
- Secondly, Pamela Wilson encourages educating oneself about the many aspects of caregiving and the options available to managing the responsibility. She does not present anything as a quick fix or a way to make caregiving “easy”. I always appreciate that truth.
In this blog post, I will share experiences from my own caregiving story that appear in What to do About Mama? in response to the subject matter contained in the following podcasts by Pamela Wilson:
- Caregiver Decision Making: How to Take Care of Aging Parents–The Caring Generation by Pamela Wilson, May 2, 2021
Caregiver Decision Making: How to Take Care of Aging Parents (pameladwilson.com)
- Putting a Parent Into a Nursing Home – The Caring Generation® by Pamela Wilson May 12, 2021
Putting a Parent Into a Nursing Home – The Caring Generation® (pameladwilson.com)
As Pamela discusses, how to take care of aging parents requires a great deal of decision making not only by caregivers and their siblings, but by their adult parents, as well. As one choice leads to the next, mistakes can and do happen -especially when caregivers do not thoroughly understand the potential consequences of the decisions made. Relationships are challenged when conflicts between adult children and parents arise out of the differences in values, needs, and goals of care situations.
I agree with Pamela that caregiver decision making is best accomplished when adult parents and children have like goals, a positive relationship, and accurate information to make the best decisions. Keeping in mind that I was a daughter-in-law, when I entered my caregiving relationship, I thought all our boxes had been checked. I had good relationship with my husband’s family, and I was knowledgeable because I was an Assessor for our Area Agency on Aging. But I discovered that even for those who are well-informed about what to expect, “Most of us do not even see that we are about to become mired in the quicksand until we step in it and it begins to suck us down.” (What to Do about Mama? p.189)
I thought we did a lot of things right:
• We had a full family discussion among the siblings when developing the caregiving plan, both when Mom moved north and later when she moved into our home.
• We communicated frequently and openly, both verbally and in writing. Although e-mailing has its drawbacks, it was efficient.
• We did our best to respect Mom’s independence. Initially, she lived in an independent retirement home. When she moved in with us, she had her own space with her own furniture and belongings.
• We provided Mom with a multitude of opportunities to socialize with both family and friends
Still, we did a lot of things wrong:
• We did not include Mom in our initial discussions. Ultimately, the decision was hers, but she was strongly pressured.
• We did not discuss our values or explore other options to moving north. What took precedence? Autonomy or safety?
• We made too many assumptions and had too little commitment. Our expectations were too high. Caregivers are giving people who often try to maintain a sense of control. Caregiving is fraught with a lack of control over both the situations that occur and the people involved. Our expectations of others were unrealistic; our expectations of ourselves were self-defeating.
• Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path.What to Do about Mama? pp. 39-40
MAKING DECISIONS ABOUT CARE:
Home care, or aging in place, occurs when a senior lives at home or with children. It involves caregiver support with handling daily activities, maintaining a household, managing finances, and coordinating related support systems. Common complications involve mounting health concerns and related physical challenges, as well as potential memory loss—all of which amount to a tremendous investment of time.
Pamela Wilson identifies the top four elder care pressures of home care.
- Responding to Health Emergencies.
These are often crisis situations that require navigating the healthcare system under pressure. Keep in mind that patients are discharged sicker and quicker with the expectation that the family will provide the needed care.
Mom was in the nursing home from mid-December until the beginning of February 2010, despite the fact that she had fallen in the facility a week before her discharge. I did not feel she was strong enough to be discharged, and indeed, she had two falls the first weekend home. Once again, we began in-home services: physical therapist, occupational therapist, and RN. I made sure to give the RN a heads-up before she came―Mom looked like she’d been beaten up due to multiple skin tears from her falls.What to Do about Mama? p. 21
- End of Life Care Decisions.
End-of-life care decisions can also arise quickly. They are particularly problematic when discussions have not occurred previously and therefore conflict can arise in the family.
- The Risky Side of Caregiver Decision Making Choices
Caregiver decision-making can take several paths. If a parent has advanced dementia, the adult child with a medical Power of Attorney (POA) has decision-making power. If there is less dementia, the caregiver has a duty to follow the direction of a parent.
If the caregiver with a POA follows an autocratic or directive decision-making process, he or she risks owning and being blamed for decisions that go wrong or risk permanently damaging relationships with aging parents. Too often, families have a wait-and-see attitude. This leads to decision making in a crisis situation, which limits options. Caregivers and aging parents often cannot agree—resulting in making decisions in worst-case scenarios
During one office visit, my mother-in-law’s doctor said that she was in very poor condition, and that if she were not cognitive, it would be obvious what step to take next (no treatment). He then continued by saying that since she was cognitively intact, decisions about treatment were completely up to her.”What to Do about Mama? p. 227
- The Burden of Caregiver Decision Making
Decision making becomes a problem for caregivers when, despite doing their best, they experience regret, doubts, and second thoughts, in addition to criticism from the other related players. For that reason, it is better to be informed by consulting elder care experts about caregiving decision making and care planning for aging parents.
Nursing home care is considered when more care is needed that a single caregiver can provide. The option of placing a loved one into a nursing home has gained attention and become more complicated due to the pandemic. In general, elderly living in nursing homes have more significant needs due to physical disabilities and health issues. Many have multiple health conditions that benefit from having access to medical care from a nurse or a doctor, including dementia, which creates the risk of wandering.
Pamela Wilson stresses the importance of communication in all caregiving situations. She warns that if you are committing to in-home care, be careful not to make promises you can’t keep about not putting a parent into a nursing home.
Remember, however, not to make unrealistic promises; you may need a way out of the commitment. Because BGM had quit her job, and her income was essential to meeting the mortgage, she and her husband became financially dependent on his mother. That left them little recourse when the burden became too much for BGM to physically handle.What to Do about Mama? pp. 251-252
She also stresses the importance of discussing the potential of putting a parent into a nursing home, early on—conversations about what happens when mom or dad need more care than the family can provide. Putting a parent into a nursing home has many factors that families don’t plan for and don’t expect, and often involve the “Big G”—or GUILT.
Once again, our conversation felt strained. I asked Sandy if she needed to clear the air about anything else. Big mistake! She told me that she felt putting Mom in the nursing home for a respite stay was selfish on my part.What to Do about Mama? p. 26
So, do your homework. Find out what a nursing home is like before you talk to your parent. See a room, visit the dining room, talk to the residents. Be prepared to talk about money. Creating a care plan for an aging parent, or a spouse is a critical component of avoiding unexpected and shocking surprises, whether caring for parents at home or putting them into a nursing home.
If you have taken the wait-and-see approach, and you are suffering repercussions—the time for discussion is now. Explain that caregivers become exhausted for many reasons. There are aspects of caring for a parent that take more and more time as an illness progresses. A caregiver who keeps going and going without realizing the toll that caregiving is taking poses a risk to an aging parent or a spouse. Caregivers become ill and incapacitated, which interferes with their ability to provide care. When the caregiver is worn out; this can impact the quality of care they provide.
I went to the appointment and made the decision to have bilateral knee replacements. That evening I started becoming very anxious. Was I making the right decision? We talked to Mom, and she seemed to understand that I could not continue to be her caregiver. The burden of caregiving (which now included hands on assistance with walking and transferring, maintaining the oxygen and carrying the bottles, pushing the transport chair and lifting it in and out of the car, cleaning up after episodes of incontinence, and, most significantly, wound care of her arms and lower extremities) was just more than I could handle in my current physical condition. David called Shelley and made plans for Mom to move the week before my surgery, which was scheduled for early April.What to Do about Mama? p. 33
If you can no longer be the caregiver, let the family know you are making alternative plans and now is the time for the “others” to step up and personally or financially to help if they disagree with nursing home placement.
At the end of March, my mother-in-law moved to her daughter’s home. . . As David’s family has always said when handing over responsibility from one family member to the next, the “passing of the feathers” had taken place. . . One month after moving in, Mom had an episode of some sort while in the shower. . . She passed away at 10:30 that [the next] morning.What to Do about Mama? p. 26
Note: These two podcasts are about in-home and nursing home care. Please keep in mind that these are two caregiving profiles on opposite ends of the caregiving continuum. There are a number of options in-between including in-home caregiving services, assisted living facilities, and continuing care retirement communities. All are viable options worthy of consideration for long-term and temporary care, all of which and are addressed in What to Do about Mama?
Pamela Wilson goes on to say: When elderly parents require 24-hour care seven days a week, if the family can afford to hire a caregiver to supplement family caregiver time, this represents a bridge that can delay putting a parent into a nursing home.
An affirmation from Pamela Wilson: No matter how the caregiving relationship ends it is important for caregivers to acknowledge all that they have done to help a parent, spouse, or other, remain independent and at home. You did and you are doing a good job. No one can take that from you. Be proud of your efforts and know that caregiving isn’t over after putting a parent into a nursing home. To make sure your parent receives good care you will still be involved. Last but not least, realize that you did not cause the illness or the declines that your parents are experiencing. Nor can you heal your parent or convince your parent to do things that they don’t want to do, those things that might help maintain or improve their health issues. We all have a choice and the free will to do what we want or what we think is best.
Pamela Wilson’s guest, Dr. Marissa Holst, Assistant Professor at the University of Minnesota Morris discusses cultural differences in families and how they affect caregiving relationships. Her remarks sum up what I believe was at the core of the disintegration of the caregiving relationship my husband and I had with his mother and his family.
Family background and culture impacts caregiving and family relationships. Culture is one factor that has a huge impact on how people think and behave. Individualistic cultures are those that stress the needs of the individual over the needs of the group as a whole. In this type of culture, people are seen as independent and autonomous. Social preferences tend to be dictated by the attitudes and preferences of individuals. Cultures in North America, Western Europe tend to be more individualistic. Collectivistic cultures express the importance of the group and social cooperation. When people in collectivistic cultures face hardship or difficulties, they tend to be more likely to turn to family and community for support. Collectivistic cultures can traditionally be found in places like Africa, Asia, South America.
Relationships change between adult children and their parents, and siblings, and there are a number of contributing factors: 1)Role reversals; 2) Family caregiving is reactive and not proactive—meaning that you don’t know what you’ll need until you’re right in the middle of it; 3) Even if you are a family with a plan, people and situations change and vary; 4) Change can and does cause conflict; and 5) Some families build closer relationships through caregiving activities—those with a history of high levels of closeness, low levels of conflict, and strong communication skills.
Our world has never seen so many older adults living at one time. Care trends in general in this country are flipping back to more home and palliative care methods. Our system just really needs to change on a large scale to meet the needs of our entire aging population.
It was the issue of family culture which I was least prepared for when I took on the role of primary caregiver for my mother-in-law. I never considered that we would not be available to my mother-in-law if and when there was a need. I saw caregiving as an opportunity to demonstrate my appreciation for being a part of their family since the age of 18. This was to be my gift to my all of my in-laws.
It was agreed upon during a family discussion that their mother’s care would be a shared responsibility, and that all of the siblings would be willing to make personal sacrifices to maintain her quality of living. It was my expectation that they would do this willingly and I never even doubted they would follow through with their verbal commitment.
I felt that most of the escalating friction of the past two years could be attributed to my role as an in-law caregiver. I found that I didn’t really understand how to navigate the family culture. It had just not been a problem before the relationship had become so complex.What to Do about Mama? p. 31