Advice needed - Considering making a huge change

I’m thinking of taking Ma back to live with me again and would appreciate hearing from anyone who cared for their loved ones suffering from Alzheimer’s at home.

Mom lived with us for a year when she was first diagnosed. When she started wandering, it was advised by all of her doctors, her social worker, and her psychiatrist that she move to a rest home. I heard horror stories of how wanderers got out of the house, even when family members were sleeping in the hallways right outside their bedroom door. I’ve also heard of the emotional and physical toll the disease takes on caretakers.

Of course, I know that firsthand. Caring for my mother almost sent me to the hospital twice. So why would I consider doing it again? For a couple of reasons.

1) No matter how wonderful the rest home / nursing facility, there is nothing like being cared for by your own daughter / family. And even if the patient to aid ratio is excellent (like it is where my mother is), there is no better ratio than 1:1.

2) After hearing from both the Alzheimer’s Association and the Director of Nursing at the rest home that my mother is not benefiting at all from me taking her here and then returning her, I can’t live with her coming to my house just once a week. Is that part about me? It certainly is. I can’t deal with it. My heart can’t take it. Keeping her away from the place where I can dote on her and keep her swollen legs up, and feed her pasta, having her away from the place where she feels most comfortable and safe, it is all unacceptable to me.

So what would I do differently?

First, I would give up my business. I would no longer work. I have someone that I trust completely and would hand over all of my clients to her. We would then become a one income household but we can swing it with a few adjustments.

Second, we’ve considered moving closer to family. Right now we live 2 hours away from my brother and an hour away from aunts and cousins. Being closer to them would at the very least, lend me quicker emotional and “in a pinch” support.

Third, I would have a nurse come a few times a week to give me a break and I would have my mom go to a program that starts later in the day so that she can sleep in a bit. This may help avoid the knock-down, drag out fights we had in the past that usually left me in a puddle.

Putting my mother in a home never sat well with my heart, and though my head got it, there was a part of my brain that said I could keep her at my house if I arranged things differently.

But everyone is telling me its impossible – doctors, nurses, family. She is too sick and I am of a “delicate” nature.

I need someone to tell me I can. I need someone who has done it to tell me it’s doable.

I appreciate any advice...

I Just Don't Know What to Do

Sadness and confusion. Constant feelings I carry with me like an oppressive sack that hangs around everywhere, getting fat like Santa’s bag of presents. I can’t read a book or watch a movie. I struggle to make plans with friends. There is no space in my head for the frivolous and the enjoyable. When my mother does poorly, I do poorly, and this week was a beggar man’s one.

Mom was here on Tuesday and Wednesday. I visited her on Thursday and I took her to a social daycare program yesterday, one she attended for six months prior to moving into the rest home. She made lots of friends there and everyone was happy to see her. She remembered almost no one.

Mom has been happy on the days she is with Dan and me, but extremely confused when it is time to leave. She thinks she is going home and I still can’t figure out where that place is in her mind. Could it be the North End where she lived most of her life? Or in Saugus where she lived for the past twelve years? She can’t verbalize it. I don’t think she can even see it clearly. In any case, her idea of where she is going is separate from the reality.

On Tuesday when Dan pulled up to the rest home he had the worst “drop off” yet.

“Why are you taking me here? I have to go home! I have laundry to do and I have to feed the cat…she’s been alone all day.”

“Jill, it’s alright, this is where you live.”

“Stop saying that! It’s not. Take me home!”

A solid fifteen minutes of this ensued. Then Dan was rescued by a brilliant thought. He told my mother that if she was going to stay overnight at her “house,” she needed her pills and would have to go inside and approve him signing them out. My mother looked at him with twisted eyes.

Dan continued. “You know how we sign out your pills everyday, Jill, when you visit? You are at the front desk when we do that. I need you there or else they won’t give them to me.”

Into the rest home she went, and back out she did not come. Trapped. How unbelievably heartbreaking.

We’ve had three drop-offs like this in a row and I am starting to wonder if it is beneficial to take her out so much. She is with me outside of the rest home 4 to 5 times a week. Lately, it just seems to bring her more confusion and irritation.

Yet, when she is not here my stomach goes on roller coaster rides, and after I work I either sleep (3 hours today and yesterday) and then clean my already clean house like a housekeeper on speed. It’s crazy. And I don’t know what to do to stop it. It’s tearing me into tiny pieces and I just don’t know what to do.

Lulu to the Rescue

Prior to moving to the rest home, my mother was waking and rising from bed almost every night. We were alerted to this by a reindeer bell we had fastened to her door handle. Mom would whip the door open and the bell would clatter. It always woke us. Most of the time, we’d catch her at the top of the stairs - half dressed, sometimes with her “hair” on, always confused. Her pocketbook would be filled with the strangest things; a doll from her bureau, an empty makeup case, a pair of worn socks.

One night, unbeknownst to us, Mom had removed the bell.

Lulu, one of our kitties and the youngest of four in the house (though not the smallest as you can see from her picture), jumped up on our bed one evening and sat at Dan’s feet. She began to give her short-bursted meows (more like barks) which she does only in the mornings when we’ve slept too late and she is hungry. She has never given us this call in the middle of the night because it means one thing – GET UP. Dan woke instantly and Lulu bark-bursted again, looked at him and then at the door. The house was ablaze with lights. We could hear my mother rustling downstairs. When I reached her, she was very confused and sweating. She was talking nonsense. I guided her back to her bed, removed the shirt she had put on backwards and the one sock from her foot and eased her back into bed.

We would never have known if Lulu didn't alert us and who knows what my mother would have done or where she would have gone. The idea of it sends me crazy and I hug my little Lulu and thank her with little kitty kisses.

Have you had an experience where an animal has alerted you to danger? I'd love to hear about it.

A Plan Hatched by Deidre

When Mom moved to the rest home, she had what appeared to be a very nice and companionable roommate. We’ll call her Deidre.

Deidre is ninety-one years old and one of the more astute residents at the home. She dresses in colorful and patterned skirts with matching blouses, a brooch attached close to the hollow of her throat, neat as a military sergeant and independent in ways my mother isn’t. For instance, she needs no assistance showering and she is still ‘toilet trained.’

As I look back on it, I believe these differences, along with a host of others, set Deidre to plan a permanent removal of my mother from the room. I should have known something was up when she took over one of my mother’s bureau drawers, then another, and inched my mother’s closet space down to nothing.

I heard about ‘the incident’ a day after it happened. Apparently Deidre, when she finally headed to bed around midnight, turned on all the bedroom lights, startled my mother awake and accused her of ‘moving her things.’ When my mother insisted she did not, Deidre called her a liar.

And hence, my mother was set off like a kite in a windstorm.

The nurse on duty that night heard the elevator bell ring, the doors squeak open, and out came my mother and Deidre, side by side. Mom was wigless and in her nightgown, Deidre as crisp and clean as she was that morning. When Deidre went into her diatribe of my mother’s sticky fingers, Mom had had enough. She wielded her fist in front of Deidre’s face, her eyes turned to paper-thin slits and she growled, “If you call me a liar one more time I will punch you right in the face.”

The nurse told me he had never seen Deidre so frightened, nor had he ever seen my mother so angry and so violent.

“It was scary, Lisa. Your mom is gentle and easygoing but she actually scared me too! It was completely out of character.” Hmmm, not so much.

Now, I am not one for conspiracy theories, but I do believe this was a plan hatched by Deidre. Why? Because my mother was bringing Deidre’s spirits down, dimming her mojo, filling up the room with pernicious odors.

In the end, it worked out just fine. Mom is bunking with a kinder and gentler roommate who watches over her with genuine concern and tenderness. We’ll call her Bea. She is an angel and I love her.

As for Deidre, she has a new roommate, for now.

"Cause I'm a Wanderer..."

It happened three weeks ago. I was startled awake by the click of the front door closing. Looking back, I am astonished that a sound so slight and innocuous would awaken me from a sound sleep.

“Did you hear that?” I asked Dan.

What we both heard next were very light footsteps on the front porch.

“It’s just the cats,” Dan said.

“Are you sure?” I asked?

“Mm, hm.”

I lay restless for ten minutes, straining my ears, lifting my head at every sound. I was uneasy, itchy, anxious.

Finally, I got out of bed and headed directly to my mother’s room with no real, conscious intention of doing so. Her bed was empty.

“Dan, my mother isn’t up here!” I said, as I flew down the stairs and called for her in increasing decibels. Nothing.

Our house sits on a small dead-end road that intersects with a much larger street. I threw on my slippers and raced to the end of it. At 5:00a, the sky was as dark as night. The streetlights illuminated the intersecting road in florescent shadows. My head snapped right and left. No mother.

Back at the house I did a much more thorough search while Dan was getting dressed. I saw that my mother’s pocketbook was gone. One of her pouty-lipped Styrofoam busts was devoid of its wig.

“Did you check the basement bathroom?” Dan said.

“No, but I don’t think she’d go down there.”

“Let’s check anyway.”

Nothing. No mother. And no feelings. I was empty of emotion. My heart was banging, but for all intents and purposes I was lifeless. My mind was racing but my blood ran still.

I found her at 5:25a as she was just stepping onto someone’s porch, her hand reaching for the doorbell.

“Ma!” I called.

She turned as if in slow motion.

“Oh Lisa!” she said. “There you are.”

I jogged up to her and put my arm around her shoulders. She was clothed in her navy blue Capri’s with embroidered strawberries, a pale green top and a black jacket. She had put sneakers on, her wig, rouge and a deep red lipstick. She was carrying her purse and she was drenched in sweat.

“Where are you going, Ma?”

“To see Ann Becky in the hospital.”

My mother cared for Ann everyday after school for years while Ann’s mother, a single parent, worked. Ma would often take her for weekends as well. Ann was part of our family for a long time and something in my mother’s ailing mind was seeking her out.

“Isn’t it too early to visit her?” I asked, playing along so as not to frighten her.

“No, it’s the perfect time. No one will be there.” She was breathing heavily and her eyes were foggy. But every motion she made was sharp and jagged, defined like a short-circuiting robot.

“Can we go back to the house and have coffee first?” I asked. “Then we can get going to the hospital.”

Once we were back inside, my mother started to “come to.” The cloudiness lifted, replaced by a sharp confusion. In her land of patient visiting, she knew exactly where she was going. Now, back at my house, reality was nudging its way in and the scenarios didn’t match up.

I got her settled in bed and walked dazedly back to my own bedroom. Dan was waiting for me.

“I feel nothing.” I said.

“There is nothing to feel,” he said. “She is safe and that’s all that matters.”

But I felt it seven hours later.

I had finished my last job and was sitting in my car. Here it comes, I thought, as the wave of fear and grief washed away the shock, and exposed the naked feelings my mind was hiding from my heart.

I didn’t expect this. I thought ‘wandering’ would ignore my mother. I don’t know why. Perhaps because once that happens, there is no denying the disease. It is too grave and blatant a symptom.

Since that morning three weeks ago, my mother has attempted to leave the house one other time. She has a reindeer bell on her door to alert us if she leaves her room and we now turn on our alarm system as an added precaution. I’ll order an ID bracelet and have even considered making up a one sheet handout with my mother’s picture on it and stats to distribute throughout our neighborhood. Her doctor has increased her Seroquel at night to make the possibility of an early morning stroll less likely.

As for me, that day put me in a whole other realm of anxiety and depression and I still haven’t found my way out.