Life as a caregiver…

We moved in with my in-laws about 3 months ago to care for them and help them stay in their own home. FIL just turned 88 and MIL will soon be 90. FIL has back problems and was caring for MIL alone. MIL has Alzheimers as well as physical difficulties with asthma, sinus and shoulder problems that are now complicated by the lack of movement and muscles beginning to atrophy. Those physical problems are accentuated by the Alzheimer’s symptoms and a sheer massive stubborn streak. After all, at almost 90 shouldn’t she be able to do what she wants , eat what she wants and say what she wants? Normally I’d agree, but after 3 months as a caregiver I am beginning to disagree…

To begin with eating what she wants creates digestive issues that are a burden to the caregiver. I’m trying to be diplomatic here, but it is what it is and like a baby who does not know any better as to what they can and cannot eat, a patient with Alzheimers has to be dietarily managed in the same fashion. Just remember what goes in eventually comes out one way or another.

As for doing what she wants, she doesn’t really do anything but sleep, get up and move to the living room, eat and drink and then back to bed at 3AMish. Sounds fairly innocuous? Right? WRONG! Once in the living room she reigns from her chair with the mouth a sailor would blush at. All the while watching NOTHING but old westerns again and again and again…, complaining that she is lonely and no one will watch TV with her (despite that we’ve seen this movie 3 times this week already with her) or she needs a drinking partner (don’t worry it’s way watered down) and fixating on the one thing she can remember. If she is feeling particularly lonely she whips out the cell phone and calls me, doesn’t matter what time of day or night or that I’m in the next room or that my cell minutes cost me money…

When you’re a 24/7 caretaker you HAVE to take time for yourself! That’s all there is to it. When I was away for Christmas, I realized that I hadn’t had a solid good night’s sleep in 64 days. I then had 4. Now it’s been another 9 nights of disrupted sleep and I’m feeling the pain. It’s not that she needs things necessarily during my sleep time, it’s that she is listening to the large screen projection TV with ceiling speakers turned up so the sound reverberates through the attic and rattles the windows. Many family members have offered up advice on dealing with the situation – all good and meaning, but until you have lived it 24/7, not just a few days at a time you can’t feel the impact of the progression of the disease.

This is my second time living “it” and there are so many similarities, but also quite a few differences. Without going into much detail, the differences have compounded the care. Things like thermostat levels, elder drama and sleep deprivation. There are many organizations that can help, but that too is a double edged sword. Many want to do an in home evaluation before you can hire them and with such a great demand for their services they can pick and choose their clients. They have been quite upfront about not accepting cantankerous or belligerent clients. If the patient won’t readily accept the help they won’t do it, but they will charge you the mandatory 2 hour rate for showing up. For us this is a problem as MIL needs help showering and such and REFUSES to do it 99% of the time. And while I believe this has become a health & safety issue for her and us, no one will intervene unless she were to be hospitalized. She also refuses to go to the doctor. I believe this is out of fear of learning the same information we already know, that she has Alzheimers. Without going to the doctor and getting new blood work they won’t adjust the medications and the disease wins again and progresses further. It becomes a vicious circle that has no end. At least not a good end.

All the literature from the Alzheimer’s association says you should always follow these 3 golden rules for living with an Alzheimer patient:

1) RE-DIRECT, RE-DIRECT, RE-DIRECT – If they become fixated on a specific thing try redirecting their attention to something positive and alluring for them.

2) TEACH YOURSELF TO LIE, LIE, LIE THERAPEUTICALLY – If they become fixated on a specific thing, agree and suggest at the same time that next Tuesday would be a good time to do it. They are normally appeased, at least for a bit. Also easier said than done when they appear to be having a lucid moment and you want to be honest with them. The emotional ties to the person can impede the caretaker big time. As can the ability of the patient to know what “buttons” to push in the caregiver. You know the ones attached to those emotional ties.

3) NEVER NEVER, NEVER ARGUE – Easier said than done when the patient is like a dog with a bone. FIL is the first to tell you this and the last to listen to his own advice. He gets so worked up trying to talk to her that they fight and then he leaves out of anger.

They say following these 3 rules are for the patient’s peace of mind. They don’t on that same sheet offer any advice for your peace of mind. You do need to find those outlets for yourself though.

FYI Alzheimers disease according to WIKIPEDIA can be broken down into 4 stages.

Pre-dementia – The first symptoms are often mistaken as related to aging or stress. Detailed neuropsychological testing can reveal mild cognitive difficulties up to eight years before a person fulfills the clinical criteria for diagnosis of AD. These early symptoms can affect the most complex daily living activities. The most noticeable deficit is memory loss, which shows up as difficulty in remembering recently learned facts and inability to acquire new information.

Subtle problems with the executive functions of attentiveness, planning, flexibility, and abstract thinking, or impairments in semantic memory (memory of meanings, and concept relationships), can also be symptomatic of the early stages of AD. Apathy can be observed at this stage, and remains the most persistent neuropsychiatric symptom throughout the course of the disease. The preclinical stage of the disease has also been termed mild cognitive impairment, but whether this term corresponds to a different diagnostic stage or identifies the first step of AD is a matter of dispute.

Early dementia – In people with AD the increasing impairment of learning and memory eventually leads to a definitive diagnosis. In a small portion of them, difficulties with language, executive functions, perception (agnosia), or execution of movements (apraxia) are more prominent than memory problems. AD does not affect all memory capacities equally. Older memories of the person’s life (episodic memory), facts learned (semantic memory), and implicit memory (the memory of the body on how to do things, such as using a fork to eat) are affected to a lesser degree than new facts or memories.

Language problems are mainly characterised by a shrinking vocabulary and decreased word fluency, which lead to a general impoverishment of oral and written language. In this stage, the person with Alzheimer’s is usually capable of adequately communicating basic ideas. While performing fine motor tasks such as writing, drawing or dressing, certain movement coordination and planning difficulties (apraxia) may be present but they are commonly unnoticed. As the disease progresses, people with AD can often continue to perform many tasks independently, but may need assistance or supervision with the most cognitively demanding activities.

Moderate dementia – Progressive deterioration eventually hinders independence; with subjects being unable to perform most common activities of daily living. Speech difficulties become evident due to an inability to recall vocabulary, which leads to frequent incorrect word substitutions (paraphasias). Reading and writing skills are also progressively lost. Complex motor sequences become less coordinated as time passes and AD progresses, so the risk of falling increases. During this phase, memory problems worsen, and the person may fail to recognize close relatives.Long-term memory, which was previously intact, becomes impaired.

Behavioural and neuropsychiatric changes become more prevalent. Common manifestations are wandering, irritability and labile affect, leading to crying, outbursts of unpremeditated aggression, or resistance to caregiving. Sundowning can also appear. Approximately 30% of patients develop illusionary misidentifications and other delusional symptoms. Subjects also lose insight of their disease process and limitations (Anosognosia). Urinary incontinence can develop. These symptoms create stress for relatives and caretakers, which can be reduced by moving the person from home care to other long-term care facilities.

Advanced dementia – During this last stage of AD, the patient is completely dependent upon caregivers. Language is reduced to simple phrases or even single words, eventually leading to complete loss of speech.Despite the loss of verbal language abilities, patients can often understand and return emotional signals. Although aggressiveness can still be present, extreme apathy and exhaustion are much more common results. Patients will ultimately not be able to perform even the most simple tasks without assistance. Muscle mass and mobility deteriorate to the point where they are bedridden, and they lose the ability to feed themselves. AD is a terminal illness with the cause of death typically being an external factor such as infection of pressure ulcers or pneumonia, not by the disease itself.