Caregiver Crossroads

Someone you love is growing older. Acting strange. Losing their way. Forgetting things.

You accept that seniors begin to forget as they age. But dementia was never on your radar. You have Barbados, Cancun and Canary Islands catalogs on your coffee table. Your biggest decision ahead is to pick where this year’s winter hiatus will be. You need to hire a snow plow company so the snow will be removed from your drive while you're away. You arrange for your neighbor to spot check the heat inside your home periodically so no pipes freeze. You spend time dreaming of what to pack, to add to the cute little blue and white bathing suit and cover-up you just found on sale, the one you plan to wear while spending time in the sun by the ocean. Next you must look up book titles you might like to read on the beach.

Your loved one walks in the door from a little afternoon out with friends. He had agreed, when you called him earlier, that he would pick up a dozen eggs on his way home.  When he arrives, he has a loaf of bread. Well, he remembered he needed to bring something home, he just didn’t remember what and did not even know he had forgotten . . . he never thought to call to ask.

Normally, he would respond to you with an apology when you tell him you asked for eggs. This time he gets aggressive and denies you asked for eggs. He is beginning to change in personality, but you think it is because you are home too much together in retirement.

Then one day, he comes home late. He can’t explain exactly why. He begins to concoct some story about the car breaking down, and then switches to telling you he ran out of gas. Your senses tell you something is not quite right about the discussion. At the end you discover he took a wrong turn and didn’t know where he was. The delay in arriving home reflects his driving around to find where he was. He didn’t even remember he had a GPS that could help him find his way home.

You want to suggest he might see his doctor to check if he is ok. But he doesn’t care to be told when to see his doctor, after all he doesn’t tell you when to see yours.  Eventually, you decide to call his doctor and explain that you’d like it if he could help get your loved one in for a visit without his knowing you were involved.

Several months later you get a call from the doctor asking if you had noticed any memory issues? Did you think your loved one was being more forgetful than normal? It doesn’t take you long to put it all together and agree, yes, you had noticed.  So, when the doctor says your loved one is to have a set of memory tests, you are rather pleased because something might be discovered.

And then the day comes. You and your loved one are sitting across from his doctor. You hear the words mild cognitive impairment. Unfamiliar with the term, you ask for clarification. And then it hits you, your loved one is in the beginning stages of Alzheimer's disease, memory loss. A fatal disease that never goes away and will change your life forever. And neither of you knows much about it.

In that instant, during that meeting, even though no one asked if you were up for the job, you become a caregiver. Circumstance put you on the path with your loved one. You are going to be taking care of him for the rest of time. You, alone. If you have family, they might learn to help once in awhile.

Now what do you do?

Do not let the inexperience of caregiving silence you.

You have arrived at the crossroads, the juncture in life where caregivers generally realize their life is going to change along the path ahead, as they head toward an unfamiliar world. Many go through the same thought process asking themselves:

“Why did this happen to me?”

“I didn’t ask for this job!”

“What do I do?”

“How will I do it?”

“Who will help me?”

“Where will I find help?”

Quickly, caregivers have to learn about support. I didn’t even know what that really meant. We had to learn. I became truly exhausted before we realized we needed support. I had no idea what was available because I had been turned away earlier. Too trusting, frightened and naive, I never went back to pursue. My error.

Keep asking questions. Talk to everyone you know. Do not let the inexperience of caregiving silence you. Interrogate! You be the interviewer. Be courageous. If you make your needs known, there are people who will be reaching out to you, holding your hand as you make your crossroads decisions, as you cross the wobbly, slippery rocks to join that incredible group called caregivers.

Amazing caregivers need support to keep going. Believe me, you will be awesome. You will find inner strength, what Deepak Chopra calls your buried treasure. Then, reach out for the support you will need to keep going. Take the first steps.
 

Do something each day that makes your heart sing.   jas

Original photograph in post by James Wheeler, Souvenir Pixels