My Journey to Caregiver 1
Caregivers,  Dementia

My Journey to Caregiver

December 2016 was the first time I experienced firsthand exactly what being a caregiver entailed. Because of family history, I knew that the time would come, but I wasn’t prepared at all. I was still working full-time then. My aunt called me at work and said that Mom was sitting on the stairs coming up from the basement (where her bedroom is) babbling and incoherent.

Fortunately, I had a very understanding boss and I was able to leave work immediately. I came home and my aunt was correct. Babbling and incoherent, we immediately took Mom to the Emergency Room.

I’ll spare you all the details of the Emergency Room, but I recommend that everyone fill out a Durable Power of Attorney right away, whether you think you need it now or not. Mom had been doing well up to this point. She had a problem with short-term memory and following directions but was relatively healthy.

Mom was diagnosed with a Urinary Tract Infection and was admitted to the hospital that afternoon.

My Journey to Caregiver

In the hospital

IV antibiotics were administered, hoping to reduce the infection symptoms quickly. I had no idea that a simple UTI could cause so many problems. According to, the lesser-known symptoms of a UTI in the elderly can include:

  • Confusion or delirium
  • Agitation
  • Hallucinations
  • Other unusual behavioral changes
  • Poor motor skills or loss of coordination
  • Dizziness
  • Falling

Check, check, check…

This was also the first time I had experienced Sundowning with Mom. (Mom’s Mother had Alzheimer’s, so I had seen this before, but not from her). Even though I knew she was not in control of what she said, the words definitely stung and I had to fight hard not to get defensive. She was accusing me of keeping her there while her cat (Max) was in the hospital about to be put to sleep. (No cats were harmed while she was in the hospital and Max is still around and as ornery as ever.)

I recommend that everyone fill out a Durable Power of Attorney right away, whether you think you need it now or not

Off to Rehab

The most surprising aspect of the infection to me was how weak it made Mom. She had been mobile and relatively self-sufficient up to then. Now she could hardly stand, let alone walk. The hospital social worker and the doctor recommended she go to a Rehab facility to regain strength.

Mom was still confused about where she was and why, but the Physical Therapists really did their job. We visited her daily, seeing her get stronger physically, but her mental stability didn’t seem to improve. She was still hallucinating and became agitated in the evening. One day when I visited she introduced me to her new “friend”. The poor man looked so confused! I really felt sorry for him. There were many other examples of her behaving unusually, but no one seemed to be working on that.

The Rehab center Social Worker scheduled a conference with us after 10 days, as required by Medicare. We came to the conference expecting them to tell us that they wanted to admit her to the Assisted Living area and that she was going downhill rapidly.

Boy were we surprised when they told us that she could come home in 2 days! They had done the job they were prescribed to do; she was much stronger. We didn’t understand that that was their entire scope of treatment. Ok then, she was coming home.

Home again, home again…

I’m so thankful that my aunt was here to help with Mom’s care! Things were difficult, to say the least. The first night home she was confused and hallucinating. I heard noises downstairs and came down to find her lifting the 50″ tv, about to drop it! From that point on we continued to give her the anti-hallucinogenic at night.

While I was working, we took advantage of the resources available through our County Agency on Aging, such as Meals on Wheels.

My aunt was able to get Mom to her doctors’ appointments and I was able to go to many of them as well. She stayed on the Psychiatric medicines that she had been prescribed at the Rehab center, but her doctor wasn’t comfortable being in charge of them. He recommended that she see a Psychiatrist, which she did. I did not attend that appointment, but she reported that she didn’t like him and wouldn’t go back. We let that slide for about six months.

Poof! I’m a Caregiver

I was laid off from my job During that time, so I took over all the caregiver duties. Her primary care physician and I were able to convince her to go to the Psychiatrist again and this time I went with her. I cannot recommend enough that anyone with Dementia/Alzheimer’s sees a psychiatrist! What a difference he has made. He increased the amount of Donepezil (Aricept) that she was taking, as well as adding Memantine to improve her ability to think and remember.

Memantine and Donepezil will not cure Mom, but it has made life so much better for her. She has less trouble speaking and remembering what’s going on. The psychiatrist also put Mom on two anti-depressants and that has helped tremendously.

How we’re doing now

The last year and a half has been a rocky road, but we have settled into a routine that works for all of us. I am now working part-time outside the house and trying to get this online business going  so I can afford to stay home as a caregiver. Mom is doing very well. She still has trouble following directions, for instance on a brownie mix box, but she is able to fix simple meals for herself. Now it’s her physical health that is declining. She has fallen several times, resulting in more ER visits and another stint in Rehab.

This time in Rehab, however, she was focused mentally which allowed her to see how much she enjoyed socializing with the other patients. Mom has even joined the Silver Sneakers program at the YMCA to get some exercise and social time.

I’m hoping this will also make the transition to Assisted Living easier when that time comes. We talk about checking out assisted living and memory care centers now, while she can make informed decisions, but we keep putting it off. I know we need to do it, but…

I hope this has proven to be helpful. Please tell me how you came to be a caregiver. Did it rush up to meet you like it did me, or was there more planning involved? Do you have help from other family members?

I'm my mother's primary caregiver in her battle against Alzheimer's Disease. Join me on my journey to learn to earn an income online to allow me to continue caregiving and eventually live a location independent lifestyle.

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