A Lonely Affair

How Lonely Is the Life of a Caregiver......

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The factors of life that cause loneliness sprout like weeds in the seedbed of dementia.  It infects both the patient and the caregiver, often causing Alzheimer’s families to exist in a sea of self-exile. 

Take it from the experts, loneliness in Alzheimer’s has nothing to do with the need to be in a crowd.  The loved one may follow the caregiver around the house constantly, not allowing her a moment’s peace, but the caregiver still feels alone.  Sadly, so does the Alzheimer’s loved one.  Solitude is something that we can all process and even enjoy.   But aloneness is a thing of the spirit.  Aloneness makes us feel abandoned. 

As one caregiver put it: “I get lonely because the person I always confided in is not there any more.  Without her companionship, I feel like I’m half here.  I miss her so very, very much - even though she’s right there in the room.”

The loneliness of Alzheimer’s is not having someone to compare notes with when you don’t know what to do.  It is the aching for a loved one who is facing the ultimate aloneness.  It is missing the person who was beside us, and part of us, for so many years.  One turns to reminisce, or compare notes and they just aren’t there.  It’s the aloneness of watching friends and family scatter when there are needs to be met. 

All serious illnesses are difficult, but one has the loved one to the end   With Alzheimer’s we take the painful last journey to the ultimate end alone – without the company of the person we are accompanying. 

Sadly, there are no miracle cures for the aching loneliness and pain that we feel as we make the journey.  It is time that must be spent.  But there are Band-Aids – little things that get us through the day, to help us stay mentally and physically healthy. Those families with a sound social foundation, a network, seem to handle this disease with less strain on the psyche.  Keep your physical, spiritual and social needs in mind.  Find ways to connect with the groups you are used to being with.  It may mean getting day care, in-home respite services, and begging friends and family to help.  Call in your chits!  This is a tough time and don’t hesitate to ask for help. 

• If your loved one doesn’t get too agitated, continue entertaining.  Make your visitor’s stay pleasant.  Take away their awkwardness at dealing with dementia by remaining with a guest when they visit for the first time – help them with uncomfortable conversation gaps.  If they don’t accept your first invitation – try again.  This is no time to be thin-skinned.

• Take up or maintain hobbies.  Knitting, walking, cooking, cards – Take classes, at night, if necessary. Exercise. You can find time by asking a relative or friend to stay with your loved one, or, by taking your AD patient along.

• Connect to people by phone and Internet. Maintain your familial and social relationships by phone and email. And consider getting involved with an Alzheimer’s Internet news/support group. http://alzheimer.wustl.edu/adrc2/alzheimerlist/  When you’re homebound, communication with the outside world is critical.

• Take advantage of resources offered by your local chapter of the Alzheimer’s Association (www.alz.org/findchapter.asp) or your area agency on aging. Organizations such as these offer discussion and support groups, and referrals to services to help you cope.

• Bring your loved one on shopping and dining excursions as long as you possibly can.   You need to get out of the house and so does the loved one.  In the process, you educate the public on how to deal with dementia. 

• Accept help if offered.  If anyone says, “How can I help?”  Tell them.  Ask them to come over and sit for an afternoon while you shop or go golfing.  Ask them to come take your loved one for a walk so you can have some free time.  Then use that free time in some activity that will once again connect you to the human race.

• Above all, join a support group.  Here you will find others who need you as much as you need them, and who understand exactly what you’re going through. 

A final last word:  Don’t let this disease win.  Don’t let it tear you apart.  We don’t need more victims to dementia than we presently have. Tell yourself that you are doing what so few people are willing to do.  Tell yourself how great you are and know that you are capable of seeing this tough patch of life to its conclusion. Then go call a friend.

                                                                                   - Sue Matthews Petrovski

Sue Petrovski is the author of Return Journey: Hope and Strength in the Aftermath of Alzheimer’s.