Friday, July 16, 2010

Another conversation with the Alzheimer’s Association

I’ve burned up the Alzheimer’s Association’s telephone lines again. What an amazing resource. We discussed the upcoming visits with my family, the wedding, and taking mom back home.

Ma will absolutely come to my house for a visit with her family this Sunday. Her brother, sister, dearest friend and niece will be visiting for a traditional Italian dinner (with a little vegan twist thrown in for good measure). I’ll have Ma arrive early to get acclimated to the house again (it’s been almost three weeks…disgraceful) before she is inundated with a lively bunch of loving family.

As for the wedding, I looked at it more closely, away from the initial knee-jerk anger and frustration. The wedding is over an hour away and right when Ma tends to sundown. The main activity will be close to her bedtime. It will be dark with loud music and lots of energetic people. OK, even I agree (now) that would be a recipe for disaster. I took mom to the bridal shower a month ago and that was less stimulating. At least she got to participate in some of the celebratory activities.

Mom coming home was an interesting discussion. There was hesitancy in the representative’s voice at first, but we attacked the issues from every angle. Will I be able to get the resources Mom had before (funded daycare, an aid to help in the house, etc.)? How about a visiting nurse to keep an eye on her legs and her now very swollen elbow? What about respite for me and Dan? How will we wander-proof the house?

Good news is I am on the right track with researching all of these and I will not have her come home until I have things as much in order as I can. I owe that to both of us.

So, I’m feeling scared but a bit more empowered. I’m sure those two very conflicting feelings will living side by side within me for a long time.

As for Ma, we are getting closer. Hang in there Gilda-Bear!

Sunday, July 11, 2010

I'm Not Buying It

I don’t consider myself an ignorant person. I’m diligent in my research, in getting advice, direction, input from those who are more experienced than I, in seeking out every resource and data. And though the feedback is consistent, I’m still not totally buying it. Even with a measure of proof, I still think my mother is being denied more than she needs to be.

We are in the middle of a heat wave here in the North East. Temperatures have gone above 90 for close to 5 days. It’s been unbearable. One thing Mom always hated was the heat. She has no tolerance for it, and neither do I. So this week, Ma stayed in the very comfortable air-conditioned rest home without any outside excursions; we just had many meaningful visits inside.

I could clearly see by yesterday, the seventh day she’s been at the home without going out, that she was calmer, more engaged and less confused. The Director of Nursing and I discussed the almost glaring change in my mother’s demeanor. I saw the benefits. I am not blind.

And then I spoke about an upcoming wedding we are invited to, and visits from relatives over the next two weeks.

“Neither will be good for her Lisa. Your family can visit here or you can take her out. But again, going to your home will be too confusing for her.” She continued, “…and a wedding would be way too stimulating for her.”

And that’s when I lost it…again. Is my mother a prisoner? The disease is already usurping her mind. Now it encroaches upon her ability to enjoy a celebration or a day at my house with family? I just can’t abide by this, I can’t accept it. I feel like a mother whose child is disabled and being told he/she can’t jump a fence or ride a bike. The mother adamantly refuses to accept what she is being told is truth and the child soars to heights no one imagined.

Well, I am not going to sit back and watch Alzheimer’s take everything from my mother. I am NOT going down without a fight. I will never believe the right thing is denying her enjoyment. There has to be some sort of balance. She loves being around her family. Dementia has not changed that. If the venue is too stimulating, we’ll leave. But I am not going down without trying.

Friday, July 2, 2010

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...