JOAN’S BLOG – FRIDAY, NOVEMBER 14, 2014 –CAREGIVER ISOLATION – PART I

One of the most consistent themes that resonate throughout the message boards is the total isolation of the Alzheimer Spouse caregiver. It does not matter if you are a full time, hands on home caregiver, or your spouse resides in a facility – almost all of us suffer from the despair of isolation at one point or another in our Alzheimer journey. It is often a slow, subtle process that we do not notice until it is too late. Today’s blog will examine the isolation of the at home caregiver.

It is 5:30 AM. As you groggily open your eyes and turn toward your husband (Or wife – for purposes of this blog, we will refer to the husband, and call him “Bill”), you see an empty spot where he should be lying. At the same time, you hear noises coming from the bathroom. You suck in a breath, grit your teeth, and steel yourself for another day in your life as an Alzheimer Spouse caregiver.

Two hours later, after the back breaking work of cleaning the mess off of him, including hosing him down in the shower, dressing him, and scrubbing the floor, walls, and toilet, you get him seated at the breakfast table. Next comes the pill brigade, as you set out the multitude of pink, blue, white, orange, and gray tablets and capsules, while silently praying that he will take them without incident that morning. Ah, but it is not to be. He refuses to open his mouth for any of them, spewing forth a string of obscenity laced insults and verbal threats aimed directly at you. For a fleeting second, your mind wanders back 10 years before Alzheimer’s Disease destroyed your world. There is a picture of two people, still deeply in love after 30 years of marriage, laughing and joking at breakfast, discussing at which restaurant you will meet to relax and revel in each other’s company that night after a busy day at work. The picture fades and disappears just as quickly as it appeared.

After secretly crushing his pills and folding them into his oatmeal, you get him seated in front of the TV, hoping he will stay there long enough for you to clean up breakfast. It is now 9 AM. It is quiet. The phone has not rung yet today.

You dress quickly, then check on him in the TV room. Empty. Panic sets in when a search of all of the rooms yields nothing. You rush outside. He is nowhere in sight. You run up and down the street on painful arthritic knees and a debilitated back, both protesting in pain, as you frantically call his name. Five blocks away, you find him aimlessly wandering through a neighbor’s yard. When you try to coax him home, he vehemently protests, once again hurling obscene laden verbal insults at you. An understanding neighbor comes outside and asks Bill if he may come to his house to check out his bike. He explains that he is thinking of buying one like it. Bill happily obliges, walking home with Joe, as you follow behind.

While they are in the garage, you check the phone messages and caller ID. It is 11 AM, and both are empty.  

Now the shadowing begins. While you are checking for childproof door locks on your laptop, Bill is hovering over you, asking what you are doing. You patiently (?) explain that you are Internet shopping. For the next hour, he paces back and forth, never more than a foot away from you, repeatedly asking the same question. You feel your blood pressure rise and your anger seethe from the suffocation of his constant presence and questioning. The phone is still silent.

After lunch has been made and cleaned up, with him shadowing and once again asking the same questions repeatedly, it is time for errands. You have no choice but to take him along, as watching him every minute he is with you to assure that he does not wander away or cause a scene in a store, seems better than coming home to find that he has either disappeared or been destructive in the house.

You return home from errands mentally and physically exhausted from supervising him while trying to grocery shop, bank, and pick up cleaning. It is 4 PM in the afternoon; the telephone is as empty of Caller ID’s and messages as it had been all day. Nothing on your cell phone either.

Bill falls asleep in his lounge chair in front of the TV. Finally – a breather for you. You can rest your eyes and pain ridden body before supper. You cannot, however, dare to fall asleep, as he may waken and……………the possibilities are endless as to the trouble he can get into. You do not want repeats of previous broken glass, flooding, burned hands, and lost item incidents.

As you begin supper, he awakens to shadow you AGAIN, asking the same questions over and over and over. You gather what mental strength you have left, and patiently (?) answer them again and again and again.

After supper is eaten and cleaned up, it is 8 PM, and the phone still has not rung. After watching a little TV, it is time to get Bill washed, changed, and settled into bed. IF you are lucky, it will go smoothly, without a hygiene accident, a fall, or a temper tantrum. Whew! An hour and a half later, he is in bed. You pray that it is for the night, as you are physically and emotionally exhausted. It is 10:30 PM, and you have been cleaning, vigilantly supervising, answering questions, cooking, and tending to Bill for 17 straight hours.

Going over your day in your head, your realize that, except for the single encounter with the neighbor and store clerks, you have not engaged in one conversation with a peer in those 17 hours since you woke up in the morning. No one has called on your home or cell phone, nor has anyone come to visit. You do not have the time or energy to call anyone, nor do you really have anyone to call. All of your pre-Alzheimer friends have moved on without you. You and they live in different worlds now. They continue to socialize, travel, play card games, attend concerts and movies, while your days are spent caring for an adult sized special needs child and all that entails, including dispensing medications, showering, dressing, shaving, combing his hair,  chauffeuring (This day we examined did not include doctor visits, of which there are often multiple in a week), ultra vigilant supervision, housework, finance handling, home repairs – the list is endless. This is Alzheimer Spouse Caregiver ISOLATION. The silent phones are the testament to the separation of your worlds.  

Although each day may bring different challenges, each day you face the same ISOLATION. You are alone. You are lonely. You want and need friendships in order to survive, but you are a prisoner in the Alzheimer Caregiving Ward.

Even if you have the means to hire help during the week, or your spouse goes to Day Care, your respite time is limited, as are your friendships. It is not a mentally or emotionally healthy situation.

In my next blog, we will examine what can be done to alleviate your isolation. In subsequent blogs, we will discuss the isolation of caregivers whose spouses reside in facilities.

Please post comments and suggestions on the MESSAGE BOARDS: Joan's Blog - Caregiver Isolation

©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
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