THE 36-HOUR DAY
In their book by the same title (see link below), authors Nancy Mace and Peter Rabins describe the life of the dementia caregiver as a 36-hour day. It’s a metaphor for the life of the caregiver – always on duty, and never enough time to do everything that needs doing. The book, with its down-to-earth practical guidance, has been a resource for countless caregivers through the years. It is Senior Attention’s compassion for the 36-hour days of the family caregiver that serves as the inspiration for this directory.
The dementia patient will often fixate on a perceived need or problem and continue asking about it over and over. Telling him not to worry about it will not ease his concern, nor will telling him that he has already eaten, taken his meds or whatever.
When this occurs, the caregiver can try to break the cycle by redirecting his attention. Redirection, one of the most effective tools in the caregiver’s toolbox, can take many forms: changing the subject, playing along with his story, walking him into another room, singing a song, folding towels, getting a snack, or handing him something tactile.
The following video presents some excellent advice to help the caregiver perfect the art of redirection:
Our consciences tell us that honesty is the best policy, and that we should never tell a lie – especially to someone we love. But when the mind of a dementia patient is playing tricks on him, or he can no longer process information in a healthy manner, there may be times when a caregiver must choose compassion over telling the truth to protect her loved one from having to deal with an answer that may be difficult to understand or emotionally accept.
The following website discusses both the practical and moral issues concerning this concept:
The job of the family caregiver of a dementia patient may be the most stressful unpaid job there is. The responsibility hangs over her 24/7. The sadness overwhelms her, and the relentless repetition of the same question over and over is maddening. Unchecked, the caregiver’s stress can lead to health issues for her that are more debilitating than the dementia from which her loved one suffers.
Following is an article that discusses caregiver stress and some ways of coping with it:
Most family caregivers will eventually exhibit anger and resentment – at the patient, at God, at the disease itself, or maybe even at friends or family members whose lives go on as normal while the caregiver is tethered to her stressful care duties. It’s normal to cry out in frustration, “Why me?”
It’s also quite common for the family caregiver to feel guilty, wondering to herself, “Could I have done a better job? Could I have kept him at home a little bit longer?”
Some psychologists call anger and guilt the most useless of all human emotions. But useless or not, these emotions are genuine and should be treated as such.
The following resource provides some helpful tips for dealing with caregiver anger and guilt:
Most marriage vows include some form of the pledge to love each other “in sickness and in health.” Easy to say. Hard to live.
In so many ways, the mid- to late-stage dementia patient is no longer the same person he was on that wedding day. The disease has stripped away the personal attributes that made him so attractive all those years ago. Unconditional love asks the spouse to honor those vows and care for him “until death do we part,” but it’s just not the same when the person you love can’t love you back. At that point, it is difficult (if not impossible) to enjoy intimacy in the relationship.
The following resource discusses this difficult relationship issue and provides the caregiver with some counsel in navigating it:
When the death of a loved one happens suddenly or after a very brief illness, the surviving loved ones begin to grieve when death occurs. For the loved ones of a dementia patient, particularly the spouse, the grieving process begins shortly after the diagnosis and persists throughout the often years-long duration of the disease. As the patient gradually becomes “someone else,” grieving may begin for the loss of who he used to be.
Psychologists use the term “anticipatory grief” to describe the long process of grieving while the patient is still alive. By the time the patient dies, the caregiver may have already fully “processed” his passing. It may seem to others around her that she is not grieving his death at all; but what the caregiver feels, and when she expresses it, is okay.
The following articles discuss the concept of anticipatory grief for the benefit of both the caregiver and those around her:
The following website provides some wonderful suggestions for ways to find times to laugh, love, and enjoy time with our loved ones:
As the disease progresses, the dementia patient will need a variety of care supplies. The following website highlights some good sources for locating and purchasing these supplies:
The dementia journey will include many milestones where important (and very difficult) decisions will be necessary: taking away the car keys, quitting a job, initiating home care, moving into a senior living community. At some point in the progression of the disease, the patient’s cognitive decline will make it difficult for him to participate in some of those decisions. Two important pieces of advice here:
As soon as possible after the diagnosis is received, the patient and his family should begin discussing the difficult decisions that are coming down the road while the patient is still able to think rationally and make decisions for himself: “Whom do I want to make decisions for me when I am no longer able to make those decisions myself? To whom will I give legal authority to act on my behalf? Whom do I trust to make the most difficult decisions about my care?” Document the answers to these questions and communicate them to family members. Here’s why:
The dementia journey will present “many difficult decisions”, about some of which family members may disagree. When the dementia patient is no longer able to make those decisions for himself, there needs to be an agreed upon hierarchy for making the tough calls. There should be a decider. Unless the patient’s welfare is put at risk, the decisions of that decider should be honored and supported. This is especially true when that decider is the spouse.
Adult children and friends may hold strong opinions and have their loved one’s best interests at heart, but it was the spouse with whom the patient exchanged vows to love through sickness and in health. When this spouse is doing her absolute best to manage a difficult disease, she needs to be supported and encouraged, not second-guessed.
The following website’s author provides some very healthy advice on making and respecting difficult decisions:
Sometimes the stress of the job overwhelms the family caregiver, placing her in a situation where she simply doesn’t know where to turn for help. Following are links to some 24/7 helplines where the overwhelmed caregiver can find a reassuring voice and practical guidance for dealing with her stress:
Family caregivers endure a very stressful and isolated life. Caregiver support groups provide family caregivers with social interaction and encouragement from other caregivers who understand their stress and can empathize with their frustrations. No one can truly understand this stress better than those who have lived it themselves.
Support groups also provide a good resource for practical coping strategies and ideas – valuable input gained from both trained group facilitators and fellow group members. There are support groups that meet in person and some that meet virtually. Find one that fits your needs and schedule.
Following is a link to find a support group near you:
Although most often the primary family caregiver is the spouse of the patient, adult children can play a very important role in their parent’s care plan (e.g., providing respite breaks for the caregiving parent, participating in care planning meetings, and handling some of their parents’ household chores such as home maintenance and yard work). This physical and emotional support can certainly keep the primary caregiver healthy and encouraged and extend the period of time during which the patient can continue to live at home. Having the adult child serve as her parent’s caregiver for a couple of days will also provide that adult child with insight as to how much work it is for her other parent to serve as a caregiver all the other days of the year.
On the other hand, some adult children can actually make the family caregiver’s life even harder by disengaging from their parents’ care, second-guessing the care plan decisions of their parents, or criticizing the care being given.
Following is a resource to help family caregivers engage their adult children’s help in the care plan for their parents.
After months or years of hands-on caregiving, many caregivers assume that once their loved one passes, they will feel a sense of relief. They will, but many of them are surprised to learn that once their loved one is gone, in a strange sense, they miss caring for him. For years, caring for that person was the most important thing that they did every day. Then all at once, it’s over. That most important thing is gone. It can be a huge adjustment, especially if that loved one was a spouse.
Following is a resource to help family caregivers adjust to life after the loss of a loved one:
The Alzheimer’s Association describes itself as the leading voluntary health organization in care, support, and research of Alzheimer’s and related types of dementia. Their website provides a plethora of information that can help the family caregiver deal with issues specific to caring for a loved one with dementia:
Ask anyone in the professional world of dementia care, “Who is the leading expert in caring for dementia patients and their caregivers?” and you will likely hear them say, “Teepa Snow.” With over four decades of experience in clinical, teaching, and research roles, Teepa has a wealth of knowledge to share.
If you cannot find the help you are seeking from any of the other resources presented in this directory, go here:
Many caregivers find that consulting a therapist helps them cope with the demands of their situation. There are therapists that specialize in helping caregivers, and some offer virtual visits.
The following website provides some good information about the types of counseling or therapy that a caregiver might need and lists some North Texas resources for caregivers seeking this type of help.
