JOAN’S BLOG – WEDNESDAY, MAY 15, 2013 –CAREGIVING IS A KILLER

First, I want to thank everyone for their kind wishes and patience during my illness. It was a long, miserable couple of weeks.

Before my bout with bronchitis, I was about to write a blog addressing the tragedy suffered by our member, m-mann*. As most of you are aware, his father, in the very early stages of most likely dementia, killed his wife, who suffered from unbearable pain,  m-mann’s wife, who was deep into Alzheimer’s Disease, and then killed himself.  I am not going to discuss suicide and murder, or mercy killing, as m-mann prefers to think of it.

Instead, I want to discuss the unrelenting burden of caregiving that leads caregivers to nervous breakdowns, heart attacks, strokes, stress related death, and sometimes the contemplation of suicide. I am the type of person who likes answers to questions and solutions to problems. The caregiving issue is so disturbing to me because I can find neither answers nor solutions to it.

We, as spousal caregivers, have deep emotional ties to our spouses and guilt related to feeling angry that we have had to give up our lives to care for them. We carry these emotional stresses in addition to our physical burden of caregiving. We get up in the morning with no partner to share the day. In the early stages, we often deal with anger, resentment, and denial on our spouses’ part. There can be temper tantrums, rages directed at us, getting lost while driving, It can be similar to raising a rebellious teenager, which is difficult when your child is 15, and you are in your 40’s. When your “child” is in their 50’s, 60’s, and 70+, and you are well beyond your 40’s, it can be impossible. When the disease progresses, and they need assistance with toileting, dressing, showering, shaving, walking, and eating, the physical strain on us caregivers begins to take its toll on our health. Cleaning up toileting accidents that require latex gloves, mops, trash bags, and a lot of sweat, further break down our physical and mental health.

Then there was my recent illness. No matter how horrible I felt, and believe me, horrible barely describes it, I still had to get out of bed to tend to Sid’s needs. Breakfast and lunch had to be set up, made, brought to him (by me), and cleaned up (by me). Thankfully, we do receive a delivered dinner here at the Independent Villas, but I still had to get out of bed to answer the door, warm it up for him, set it up in front of him, and clear it away. I had to give him his pills at the correct time, regardless of whether I needed to sleep. I had to drag myself out of bed to open my own can of soup. I had to keep a written log of when I took my various medications. I was coughing, could barely talk, was extremely fatigued, had a fever, and was generally as miserable as I could be, but Sid’s needs came first.

Click here for an old message board discussion on “just an ordinary day” in the life of a 24/7 caregiver. I can assure you that it will be mind boggling to those not familiar with caregiving.

Those coping with Young Onset Alzheimer’s Disease ( diagnosed before age 65) have their own set of unique problems. Not only are they caring for their spouse, but are still working and raising children. Their salary, which paid the mortgage, utilities, car loan or maintenance, college funds, retirement funds, food, clothing, health insurance, and general living expenses, must now include Day Care and/or in home aides to help care for the ill spouse.

So what are our solutions to avoid caregiver death from stress and health neglect? Certainly, those who have the funds, hire as much help as they need to ease their burden. They hire people to do the heaving lifting and the ADL’s ( activities of daily living). It does not alleviate their emotional stress, but it goes a long way when one does not have to worry about finances. Often, however, spouses end up depleting their savings to pay for care. Those with foresight bought a long term care policy to help with caregiving expenses.

If you think Medicaid is the answer for those without money, you are seriously misinformed. Based upon my own experience with Medicaid, I can tell you that they deny and refuse services, no matter how badly needed, unless you beg and justify every single hour you request. If you ask for too little, they question why you need the services at all. If you ask for too much, they say that they don’t offer that much home help, and insist you place your spouse in a dementia unit of an Assisted Living Facility, which they do not pay for. They “assist” with level of care payments, which are generally between $250 a month and cap off at $1200 a month. Room and board, which is generally between $3000 and $5000 a month, is your responsibility.

Unless a patient is bedridden and close to death, they will not approve Nursing Home placement, and if they do, they take the spouses’ social security to pay for it, leaving the spouse totally dependent upon the State to determine how much money they will be allowed to live on. They will “divert” the amount of money that they deem as enough for  “living expenses”.  If you own your own home, most States (although not all), will allot you enough money to pay your mortgage and remain in the home. If you rent, they will give you only enough money that they deem appropriate for rent. In most cases, it means you will have to move to a less desirable apartment and neighborhood.  Basically, you are being forced to give up your life for your spouses’ care.

Given the physical, emotional, and often financial, burden of spousal caregiving, is it any wonder that caregivers often die before the person for whom they are caring? Is it any wonder that some consider the unthinkable as did e-mann*’s father?

As I said in the beginning, I have no answers and no solutions. What I do know is that 24/7 caregiving of a spouse is a lonely, impossible task that strips the caregiver of friends, physical and emotional health, finances, peace of mind, and love of life. 

MESSAGE BOARD: Joan's Blog - Caregiving is a Killer

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