JOAN’S BLOG – NOVEMBER 18, 2014 – ISOLATION, PART II – IS THERE A SOLUTION?

Based upon the message board responses to my last blog (see below) about Alzheimer Spouse isolation, it would appear that everyone was able to relate to the topic in one way or another. The magnitude and complexity of the problem require that I break the subject into more than one part.

Please remember that these first two parts of the series deal with spouses who are being cared for AT HOME by a husband, wife, and if finances allow, some part time help. The next parts of the series will deal with the isolation of Alzheimer spouses who have placed their husbands/wives into a care facility, and those who have been widowed by the disease.  

Everyone of us has felt the isolation of which I write. Being consumed by caregiving, abandoned by many friends and relatives, we have neither the energy nor the time to “make a new life for ourselves” outside of caregiving, as we are urged by every Alzheimer “expert” and professional.  It is, however, imperative that we do so. This link will take you to just some of the countless articles that delineate the negative mental and emotional consequences of living a life in isolation, devoid of social contacts.

Do solutions to this problem exist? I can only give you my own opinion based upon my individual experience, and what has worked for me. I welcome other’s ideas and opinions on what has or has not worked for you.

I strongly advise that in the beginning of your caregiving journey, you find a support group and make friends with the members. This is the time in your life that you need to be surrounded by those who understand what you are going through, are able to advise and support you, and with whom you feel comfortable discussing the uncomfortable aspects of caregiving and the emotional toll it takes. If you are unable to find one that is a good “fit” for you, and does not meet your needs, start your own. We have had members who have done so with satisfying results.

The following essay about friendships ( author unknown) expresses the issue of dementia isolation and socialization better than I ever could:

“We can have friends for a reason, friends for a season, and friends for a lifetime.

I used to think that only lifetime friends were valuable.  That the reason and season friends were not true friends.  But now I think that God sends us all three kinds of friends, and that they are all equally valuable, and can all make lasting impressions on our lives. 

When dementia of any kind enters our lives, we sometimes lose friends that we thought would be lifetime friends, or at least they drift away and aren't as connected.  Then we may need to look around and find friends that may enter our lives only for a specific reason, or might be friends for just a season.  I have new friends that I have very little in common with, except for dealing with dementia.  There is a good chance that after we have dealt with dementia to the end, our friendship will end, because we will no longer have a common bond.  That is ok.  We were there for each other when we needed it the most.  We may find friends that enter our lives for a specific reason - a piece of extraordinary advice, a referral to a valuable resource, companionship for a certain period of time.  They may come into and go from our lives quickly, but their importance in our lives cannot be discounted."

At a time when I needed them the most, my Alzheimer support group of primarily spouses, saved my life and my sanity. We socialized, cried, laughed, and traveled together. We supported one another. There was always someone I could turn to in a moment of crisis. This is what Alzheimer caregivers need for as long as they need it. In my case, after almost 5 years, I grew weary of Alzheimer’s All of the Time, and slowly withdrew from the group, in search of a life and friends outside of Alzheimer’s Disease.

It is imperative that you get a respite from your caregiving isolation to socialize at least once a week. Most experts advise more than a mere once a week, but I am being realistic. Once is better than none. Whether it is with other Alzheimer spouses or non-Alzheimer people, that is your choice, but human connection once a week does not sound unreasonable, is essential, and can be easily attained if you have the finances. (I will discuss lack of finances later on in the blog). HIRE SOMEONE to watch your spouse so you can GET OUT. You can use the argument – I need the money I have saved to live on “later”, after my spouse is gone. If you don’t take care of your mental and emotional health while he/she is still here, you may not have a “later”. If you can afford it, it is well worth the $75- $100 a week (approximate estimate) to save your sanity.

What do you do with this time? Where do you go? Oh, I have become somewhat of an expert in researching people, places, and activities. Start with your church; look into senior centers in your city or town; check out classes at the local community college or craft store; check Meet Up on the Internet – If there is an interest, there is a group that “meets up” for it, whether it is a book club, yoga, writer’s club, day trips, meditation, knitting, hiking, music, motor cycle riding for seniors– there is something for everyone.

What if you cannot afford to pay someone to look after your spouse, so you can get a few hours of respite and social interaction? There are volunteers who will do the job – you just have to be vigilant in finding them. Again, check with your church. Check with your community senior centers and your State’s Department of the Elderly. If your spouse is a Veteran, check with the local Veteran’s Administration. They have a program in which veterans volunteer for everything from “adult sitting” your spouse to mowing your lawn. If you are involved in a support group, often members will trade off staying with each other’s spouses, so everyone gets a chance to get out.

I do understand, as I have been there, that often you are so exhausted, both mentally and physically, that you have no energy left for socializing. About 8 months ago, I made a rule for myself. SAY YES. Whether I feel like it or not, if someone invites me to go out to a live show, a shopping trip, a luncheon, a dinner, a weekend away, a game day, I SAY YES. Except for two times, one when I had no desire to see the movie to which I was invited, and another when I did not have the concentration necessary to read a particular book for a book club, I have said YES to every invitation, and I have enjoyed myself at each one.

The important things to remember are that isolation is detrimental to our health; humans need interaction with one another; and if you look hard enough and are resourceful enough, you will find what you need.

MESSAGE BOARDS: Joan's Blog - Isolation, Part II - Is there a solution?

Next in the series- A Different Problem - Isolation When Your Spouse is in a Facility

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The Alzheimer Spouse LLC
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