A common caregiver struggle is the lack of support from family members. Author Irene Olsen and I discussed potential solutions during our conversation on this episode. Irene survived being an Alzheimer’s caregiver…twice. Her father, to whom her novel is dedicated, was the first family member. Then, Irenes’ sister-in-law, diagnosed with mixed dementia a month after her father’s death, became the second.
Why An Alzheimer’s Novel?
Feeling her experiences as a caregiver were meant to go further than the confines of her own heart and using her background as care group facilitator and a state Ombudsman Irene created a supportive novel Requiem for the Status Quo.
Irenes goal in writing Requiem was to encourage and educate those called to take on the role of family caregiver. Irenes brother was an extraordinary caregiver for his wife. Irene was the go-to person for advice, direction, and the occasional caregiving day. Having been front and center on her father’s three -year Alzheimer’s path gave Irene an “edge” on experience.
Family caregivers are often ruthlessly challenged by uninvolved family members who are quick to condemn, but reluctant to offer assistance. Caregiver struggles can be devastating when their decisions are challenged or questioned. Family members not actively participating in caregiving sometimes give advice as a way to “help”.
Fearing getting “sucked in” is a common reason others don’t help more when caregiving is needed. Find out what each person feels they can help out with, giving them an active role in caregiving. Physically caring for an aging person is not something most of us are “hard wired” to handle. Thus, allowing family who can’t participate in hands on care to tackle other tasks is a huge benefit to all.
Involving Reluctant Family Members
Involving family in caregiving can be quite a challenge. It’s an issue that’s been discussed before on my podcast but worth re-visiting regularly. Many family members, feeling they are not cut out to handle day-to-day care, opt out of helping altogether. Lacking nearby proximity is also a common excuse. So, how can we help them help us?
First, ask them what tasks they can comfortably tackle.. Are they good at making phone calls to doctors, specialists, etc? Can they handle deciphering insurance paperwork? Maybe they can handle things like yard work or managing paid care providers.
There are more tasks to be done than 1 or 2 people can handle. Finding ones that each person is best suited will go a long way in maintaining caregiver health. Being the “lone caregiving solider” is putting yourself on a dangerous path.
Assuming the responsibility and full burden of care, many people march forward disregarding their own health. Eventually, this badly wounded soldier is no good to anyone. In reality it takes an army to effectively manage the care of an older adult. Failing to let others help with the practical burdens, results in a health and wellness declines.
Not anticipating how overwhelming tasks will be handled is a major source of caregiver stress. Having others who can help anticipate and find solutions to things like incontinence, heavy lifting and wandering are important. Both urinary and fecal incontinence are among the leading causes of nursing-home placement. A small or frail wife of a big man who needs help is another tough scenario.
Tips for Caregivers Who Lack Family Support
Lacking proper support, caregivers have more difficulty ensuring their loved one receives the care they need. Regardless of why there are ways to help yourself in your caregiving.
First, find out what resources are available. Before I started this podcast I was unaware of how much support is available. Connect with your local Area Agency on Aging. They can familiarize you with the available options. Also check the many options listed on my resources page. Start with the Alzheimer’s Association. They are a wealth of knowledge. If you need immediate advice they have a 24/7 hotline 800.272.3900 . A caregiver support group is a great place to start. Support groups will give you needed emotional support as well as knowledge. The Alzheimer’s Assoc. and The Family Caregiver Alliance are two places to find support groups.
Learn everything you can about the course of this disease.
Understanding what to expect and how to handle changes will go a long way in reducing stress and anxiety. Being able to plan for the more difficult stages, line up help etc will go a long way to keeping your loved one safe.
Mild Alzheimer’s disease (early stage)
In the early stage of Alzheimer’s, a person may function independently. He or she may still drive, work and be part of social activities. Despite this, the person may feel as if he or she is having memory lapses, such as forgetting familiar words or the location of everyday objects.
Friends, family or others close to the individual begin to notice difficulties. During a detailed medical interview, doctors may be able to detect problems in memory or concentration.
Moderate Alzheimer’s disease (middle stage)
Moderate Alzheimer’s is typically the longest stage and can last for many years. As the disease progresses, the person with Alzheimer’s will require a greater level of care.
During the moderate stage of Alzheimer’s, individuals may have greater difficulty performing tasks such as paying bills, but they may still remember significant details about their life.
You may notice the person with Alzheimer’s confusing words, getting frustrated or angry, or acting in unexpected ways, such as refusing to bathe. Damage to nerve cells in the brain can make it difficult to express thoughts and perform routine tasks.
Severe Alzheimer’s disease (late stage)
In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases, but communicating pain becomes difficult. As memory and cognitive skills continue to worsen, significant personality changes may take place and individuals need extensive help with daily activities.
More Caregiver Advice – For All of You
Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. It’s important to acknowledge and accept what you’re feeling, both good and bad. Don’t beat yourself up over your doubts and misgivings. Having these feelings doesn’t mean that you don’t love your family member—they simply mean you’re human.
Caregivers can learn to manage challenging behaviors, improve communication skills, and keep the person with Alzheimer’s safe. Participating in a support group and learning all you can has been proven to reduce stress in caregivers. Reducing stress is an important goal for all caregivers. Less stress keeps them healthy and it also makes caregiving a little easier. I know if I am stressed I have more trouble with my Mom.
Know your limits. Be realistic about how much of your time and yourself you can give. Set clear limits, Communicate those limits to doctors, family members, and anyone involved. Unfortunately, it is unlikely a spouse or other family member will be able to provide 100% of the needed support. This is a disease where “for worse’ frequently becomes a situation that cannot be handled alone. It is best to plan for substantial help or even a care home in the latter stages of the disease.
Planning for the future: Caregivers generally wish to keep their loved one at home for as long as possible. However, if more care, or a different type of care, is needed than what can be provided at home, residential care is often then next best option. Many assisted care facilities have programs specifically designed for individuals with dementia. Hiring in-home help is an alternative to relocating your loved one to a care facility.
What you may feel about being a family caregiver
- Anxiety and worry – Worrying about handling additional responsibilities of caregiving is common. Another concern is what will happen to your family member if something happens to you. You may also fear what will happen in the future as your loved one’s illness progresses.
- Anger or resentment – Feeling angry or resentful toward the person you’re caring for, even though you know it’s irrational is normal. Being angry at the world in general, resentful of friends or family members who don’t have this responsibility.
- Guilt – Feeling guilty for not doing more, being a “better” caregiver, or having more patience. In the case of long distance caregiving, not being available more often may cause negative feelings.
- Grief – Caregiving comes with many losses (the healthy future you envisioned, the goals and dreams you’ve had to set aside). Alzheimer’s is a disease that causes many different feelings of loss. All of these are completely natural emotions.
Summing it all up, help is necessary but not always readily available. Caregivers can get the help they need, it will just take a bit more work. Taking care of ourselves is a crucial step in the caregiving process, one that is frequently neglected. Neglecting our self care can result in less ideal care for our loved one. Following these tips and getting as much help as you can is a solid plan.
Irenes’ author site: www.irenefrancesolson.com
Her personal blog: www.babyboomersandmore.com, also known as Living: the ultimate team sport.
Irenes’ Twitter handle: @Boomer98053
Irenes’ Instagram: irenefrancesolsonauthor