Another Moving Experience

Mom enjoys a tasty lunch at her new residence

Mom enjoys a tasty lunch at her new residence

For the last three years, my mom has lived in two memory care group homes. When she arrived in her first one, she was at an awkward stage of her illness; she had moderate dementia and profound psychosis. She’d been in and out of a psychiatric hospital due to violent behavior and attempts to escape captivity. Finding a place that would accept her and cope with her behaviors was a challenge. A small group home was a good solution.

Mom’s behaviors were triggered by groups of people talking and not including her. Paranoia would compel her to think she was being “set up.” She’d try to defend herself with butter knives. Or rocks. Or bags of chips. Whatever was handy. So her placement in a group home with half a dozen residents (and 3 caregivers) was a good way to minimize her triggers. But at the same time, she was still a lot more lucid than most of the other residents, and she was miserable. I cried a lot after my first visits and had to work through it to be able to accept that of all possible solutions, this was the best I could do for her.

In time, Mom adjusted, and even enjoyed a little romance. When the freak Halloween snow storm of 2011 hit, Mom’s home in Montville lost power and she was moved to Ramsey. It was a good move. There were all women at the new place. One resident who clashed with Mom was moved to another home, and she found some buddies at the new place. And Ramsey is a lot more geographically convenient for me.

I have been pretty satisfied with the care Mom’s received, but we are now in the last year of her four year long term care insurance policy. The rent has gone up from $4990/month to $5450. Another bump could be expected in July. And they are starting to charge an additional $250 per quarter for Medicare assessments.

Having established a working relationship with a geriatric care manager (who originally helped place Mom in the first group home), I was offered a deal for Mom at a new place. This facility is the same type of home, but with more residents (the capacity is 40, but there are presently more like 20). Recently converted from a psychiatric facility, they are seeking more residents. It’s run by a nice, caring family and it’s located in Montclair. The rent is $2000 less than the place where Mom’s been living. And that’s before the anticipated 2014 increase.

After checking on the nearby hospital and servicing medical personnel, I submitted the facility to review by Mom’s long term care insurance provider. They gave it the thumbs up.

The only downside is the travel time; it’s 40 minutes from my home. It’s about 20 minutes from my office, so it’s really not bad.

I moved Mom last week. Prepared for the worst, I took time off from work to move her and support her through the move as necessary.

On moving day, I cleaned out Mom’s old room. The only furniture she has is a bookcase. She has a lot of clothing, pictures and tchotchkes. She also has a big fat red Chinese Buddha and a sand cast dog (that looks eerily real). Bob and I packed the stuff in two cars. When it was time to leave, Mom didn’t want to go. There was a woman playing piano and singing songs with the residents. I don’t think her reluctance to leave was attachment to the home so much as not wanting to leave the entertainment.

I drove Mom to the new place. She was pretty quiet. I tried to converse with her, but her language skills have deteriorated. I played music and sang to her. She smiled.

When we got to the new place, residents were sitting outside, enjoying the air. Many of them are cigarette smokers. They greeted all of us warmly.

The staff members came out and hustled the stuff out of the cars and into the home. They told me not to worry. They would wash Mom’s clothes, unpack and set up her room.

Really? I could just go?

Yes, in fact, it was better if we went. Give her a couple of days to settle in.

After reviewing the paperwork and writing some checks, I was done.

Wow. Just go. I kissed Mom good-bye, and off I went.

Days went by. I texted my friends at the new home. How was she doing? Fine. Eating well. No fights. Conversing pleasantly.

Yesterday, I got a call. Mom fell. She wasn’t hurt. She bruised her hip, but she was fine.

Today, a week later, I decided to pop in. I was greeted warmly by the residents on the porch. I entered and Mom was sitting in her chair.

“Tracey!” My mother recognized me and called my name. Over the last six months, she had usually referred to me as her big sister, Sylvia. On one recent visit, she looked at me blankly and hardly reacted.

But today, I was Tracey, her daughter. She was very glad to see me. No complaints. No aches or pains. She chattered and tried to converse. She has seen “Herby” (my father, who’s been gone nearly 10 years). She pointed out a big, heavy set fellow who was the apparent stand in for her absent husband .

Lunch was served. It looked pretty good and smelled delicious. Mom ate well and had a couple of desserts and coffee, too.

Mom’s big red Buddha was in the dining room, blessing all who came to eat. I like that.

Inspecting her room, I appreciated the way they set it up. Pictures and albums nicely stored and arranged, clothing hung neatly in the closet or folded in drawers.

Her dog was in the living room. Quite the conversation piece, many of the residents wanted to feed her or give her water.

I did notice Mom’s hands were shaky. I mentioned this to my geriatric care manager friend. She smiled and said “Guess who just arrived?” Mom’s new doctor.

I had a very good relationship with Mom’s previous geriatrician, so I was a little reticent about the change. But I was glad I was there. I got to meet her new primary care provider. He had a very reassuring manner and great, firm handshake. I gave him Mom’s history and he was appreciative. I felt very blessed with the timing. I like to know who my partners in care are.

My next appointment was pending and I had to get going, but as I kissed Mom good-bye and headed out, I felt really good about this transition. Sometimes, when you work at it, the stars begin to align and the universe brings you what you need.

Today, I am grateful and hopeful that what remains of my mother’s life will be as pleasant, comfortable and enjoyable as possible. Life is short. Except, of course, when it isn’t.

And so I am moved to say a few things:

1) I am profoundly grateful to be able to take care of my mother without killing myself

2) Know that this was possible because my family PLANNED. We could not envision this, but the likelihood that my parents would need some care at the end of their lives was high.

3) It still sucks to go through. It is painful to see someone you love deteriorate.

4) It’s easier to endure when you have a team behind you to help you cope. I am blessed to have a great team.

5) Start building your team sooner than later. Don’t wait for “too late”! If you’re interested in learning more, I encourage you to visit Light of Gray.

Hoping this won’t happen is NOT a strategy. Get moving!

Posted in aging, assisted living, caregiving, dementia, Family, life changes, long term care, long term care insurance, Uncategorized | 3 Comments

Oh Look, He’s Licking My Toes!

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Mom Recovers

As I headed to my office, I went through my mental checklists. I was grateful that the weather was clear, even if it was frigid. I would go home around noon, and pick up Mom’s fur for her to wear so she would be comfy going to see the retina specialist this afternoon.

My phone rang; it was Jane*, the head nurse at Mom’s home. Mom had fallen and bumped her head. She didn’t seem badly injured, but she said her head hurt.

“Please send her to the ER. I’ll meet her there.”

I went to my office, rescheduled my morning phone conference, touched base with colleagues, cancelled Mom’s appointment with the retina doctor and headed to the hospital.

Mom was there, having her blood drawn. I asked the nurse if a urinalysis was done.

It was on the list. Could Mom use a bed pan?

Good question. Her capabilities have been on the decline, but I thought we should try. A catheter isn’t fun.

The nurse helped Mom roll onto a bed pan. I talked to her and tried to get her to pee. She amiably jabbered to me. She was glad to see her big sister (she often confuses me, her child, with her older sister who passed in 2003).

After a time, we asked Mom if she was able to pee.

“My husband is frannish.”

I looked at the nurse and said, “Hey, I was wondering, do you think maybe she has dementia?”

She laughed and rolled Mom off the pan. No pee. A straight catheter would be employed.

The procedure was professionally administered but tough to witness.

The tests were all done pretty quickly; CAT scan, EKG, blood, urine. Then we waited. And waited.

Mom got antsy. She kicked off her blankets and wanted to get up. Her eyes were glassy. She pointed to people and critters I couldn’t see.

I got hungry, made sure the nurses knew I was stepping away and made my way to the café. I bought two cups of chicken soup and a pannini. I went back to Mom’s room and found a table so she could eat the soup without wearing too much of it. She ate well.

Finally, after about four hours, the doctor on call came in. Mom had another UTI. Nothing broken, no other concerns. So she would get Bactrim and a ride home.

I thought about taking her home myself, but aside from the fact that she had no coat, she was not mobile. She couldn’t go to the bathroom without two strong helpers. She was like a 170 pound infant.

Once I got transportation arranged, Mom sat in a wheelchair, donning hospital gown, diaper and hospital socks (she had peed on her own socks and I gave the nurse permission to toss the soiled ones). I kissed her good-bye, and she giggled, pointing to her feet. “Look, he’s licking my toes!”

I’m so glad her hallucinations are happy ones!

I went to Mom’s home, dropped off the prescription and release orders with Jane, and comforted Mom’s girlfriend. Jenny* loves my Mom and always hugs me when I visit. She seems so lucid, until you chat for more than a few minutes. I reassured her that Mom was fine and coming back. For now.

My concern is that with Mom’s history, it doesn’t take a rocket scientist to figure out when she’s having a UTI, and I may have to move her to a place that’s more observant and proactive. I have a friend who’s a geriatric care manager, who knows and loves my mother, and has other places I can consider. Next week, we resume exploring options.

Meanwhile, I’ve made sure Mom gets her meds and physical therapy. Her active imagination should take care of the rest.

*Not their real names.

Posted in aging, caregiving, delusions, dementia, Family, life changes, psychosis | Tagged , , | 8 Comments

I’m Worried About Mom, February 6, 2014 7pm at Ridgewood Public Library

Light of Gray

“I’m Worried About Mom; Turning Worry into Meaningful Action”

Speaker:
Tracey Lawrence, elder care expert

No one likes to think about sad, difficult topics, especially when they have to do with people we love. But change is inevitable, and planning can make life easier for everyone. The key is starting a family conversation when everyone in the family is able to participate. Waiting until family members begin showing signs of decline is not the best strategy.

Covered in this seminar will be ideas for getting families organized and able to discuss the difficult subjects; who needs to be involved? What questions do you need to address? What requires immediate action and what can wait? Do we need to use professional services? We will look at care choices, insurance options and documentation every family should have in place.

Ridgewood Public Library is located at 125 N. Maple Ave, Ridgewood, NJ.

For…

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Coping Strategies for Caring Kids

Handing over the keys © 2013 Tracey Lawrence

Entrusting control over one’s life to one’s children is never easy. Image © 2013 Tracey Lawrence

When roles begin to reverse between parents and children, there’s bound to be friction. Parents who’ve always been independent resist the intervention of their kids. Whether it’s control, not wishing to be a burden, or a combination, the need to involve one’s children is generally uncomfortable. It’s natural for children to back down, respecting long-established familial roles. But I’ve learned some tricks you may find useful in dealing with the transition.

Desired change: hired help in your parent’s home.
Parental response: “I don’t need a babysitter.”
Adult child strategy 1: Make it about YOUR needs, not theirs. “Of course you don’t need a babysitter. But I would feel better knowing you had a little extra help around the house. I worry about you. If I know someone is coming in to help you, I’LL FEEL BETTER. Please, do it for ME.”

Adult child strategy 2: Make it about EXTENDING THEIR INDEPENDENCE. “By having someone come in to help, you can continue to live in YOUR HOME instead of a FACILITY. I know you love your place, and this way, you can stay where you’re comfortable longer.”

Desired change: taking away the car keys.
Parental response: “I’ve been driving for 60 years. Who the hell are you to tell me I can’t drive?”
Adult child strategy: This is a terrible thing to have to address, but there comes a time when you know your parent is a danger behind the wheel. Hurting themselves is bad enough. Potentially hurting others is a catastrophe waiting to happen. So once you’ve inquired about umbrella policies for yourself and your folks,* take the keys away from them and sell their car. Give it away to charity if you have to. And if driving them around does not fit your schedule, look for a hired caregiver who can drive them where they need to go. Taxis are another viable option. And if you have to, get the local police involved to revoke their license. This is really hard and painful, but knowing the danger and allowing your parent to possibly kill or maim others is far worse.

Desired change: the move to a facility.
Parental response: “You are NOT going to warehouse ME.”
Adult child strategy: Do your homework. Start looking at places BY YOURSELF before you introduce the idea to your parent. Put yourself in their position. How would YOU like living there? Use checklists of considerations to evaluate facilities objectively. Have a meal or two to see how the food is. Talk to residents and family members. Consider how often you would be able to visit. No matter how great the place is, care will be better when staff knows family may pop in at any time. When you think you’ve found a good fit, invite your parent to visit. Realize that they’re going to push back until they’re ready. Concentrate on the future and setting positive expectations for the transition. When I brought my mom to one place, we chatted with a community relations person, and I told her that what mother wanted was for me to build a machine that would send her back in time 15 years. Mom looked at me in awe. “You’re right! That IS what I want.” That conversation opened the door for a discussion of an achievable future and how we might look ahead to an exciting new chapter rather than dwelling on sadness and loss.

Realize that this is a PROCESS. Change is not easy for anyone, and you need to take control of what you can control: the way YOU respond. When you are stepping up, you are doing something noble and valuable. But don’t expect gratitude, especially in the beginning. There will be denial, resentment, confusion and anger. Paranoia, distrust and misunderstandings are usually part of the package as well. People who were once rational and loving can become delusional and hateful. There’s no way to prepare for the emotional impact of these changes. But as you confront your own family transition, do reach out. Seek support, ask for help, talk to professionals. And DON’T WAIT. Procrastination is human, but it will bite you. Time marches on, and it’s much easier to prepare while everyone is still relatively healthy. Keep that strategy in the forefront of your mind and be ready with the others should the need one day arise.

*Talk to a professional about this kind of liability insurance. You don’t want to have to face a law suit without some kind of protection in place. And if you haven’t addressed a long-term strategy for your folks or yourself, for that matter, seek professional advice!

Posted in aging, assisted living, caregiving, driving, Family, life changes, long term care, planning, research | Tagged , , , , | 4 Comments

Happy New Fears

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My husband is in a quandary about how to spend New Year’s Eve. He remarked this week about how his favorite celebration in the last few years was spent at home, toasting the arrival of the New Year with champagne in our hot tub. That year had been especially trying as Mom’s condition had taken a severe turn for the worse. I wished for the strength to cope with what was to come and got my wish.

This year has been challenging too, and I suppose each year in one’s life must be. Bob lost his job of eleven years in September of 2012 and started a new one in February 2013. He hated it so much, it made his blood pressure escalate to the point of requiring medication. I encouraged him to quit after six months. He did, and started a new job in September. The new job is much better and pays a lot more, and I’m grateful. The hours are long, but he likes the work and his colleagues. So he’s poised for a happier new year.

I started a new career path in March as a natural extension of my elder care exploits. I was recruited by a major financial services company (the one Tommy Lee Jones likes) and graduated to becoming a financial advisor in August. It’s a great company and I love the potential of what I can do to help people. But it’s hard! Persuading people to sit down and talk to me about grown up stuff is not easy. My passion to get families talking and considering their futures does come through and I am determined to make headway in this profession in 2014.

Mom is appreciably worse. I’m glad she’s acclimating to her home. But her language capabilities are suffering and her physical coordination is failing. And her long term care funds are down to about another year where she is. I’m going to have to make some decisions.

No one knows how long a person may live. Mom can go on like this for years to come. I have resources to keep her where she is for a while. But on a long enough time line, the ugly specter of Medicaid will have to be considered. And I really hate that idea.

Clearly, she can’t live here. Been there, done that. It’s too dangerous for all of us. But if the money I put aside starts running out, I’ll need a “Plan B,” which may have to involve “Plan M.”

More grown up stuff to contemplate. Doesn’t it ever get easier? Some days, yes. Others, no.

If you find yourself in need of talking to someone about planning for your family’s future, I highly recommend working with a professional. I always have, even before becoming one. Working with the right people can save you money, aggravation and heartache.

Wishing you and yours a Happy, Healthy and Peaceful New Year. And don’t feel pressured to go out to celebrate. Sometimes the best times are the simplest, if you’re lucky. I know I am. Cheers!

Posted in aging, assisted living, caregiving, dementia, Family, life changes, long term care, long term care insurance, Medicaid, planning | Tagged , , | 1 Comment

Fourth in the Elder Care Series at Ringwood Public Library

Tonight at Ringwood Public Library!

Light of Gray

legalease“Legal Ease”

December 18th at 7pm

When it comes to having the support of their loved ones, many seniors believe they can simply tell people that they would like certain family members to speak for them. Unfortunately, there are all kinds of “protections” in place that prevent that from happening.

In the interest of saving money, many families will try to do it themselves, or seek resources through the internet. But hiring the right professional can save you thousands of dollars, not to mention anguish and heartache.

What documents should every family have in place? What’s the difference between estate planning and elder care planning? Learn about important benefits you may be missing out on and new legislation that affects the way we are treated and how well our families can represent us.

Robert J. Romano, Jr. is an elder law attorney who has been practicing law for more than…

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At the Holidays

Mom and youngest grandson Michael at Thanksgiving 2013

Mom and youngest grandson Michael at Thanksgiving 2013

It’s been some time since my last post and I suspect it will be a while before I post again. I wanted to give folks a little update. Mom is still with us, although her language capabilities continue to deteriorate. She is becoming more incontinent and her time in our shared reality continues to diminish.

I spent time with her at a luncheon at her group home the day before Thanksgiving. She had just had an “accident.” She was more confused than usual and glassy-eyed. I asked the nurse manager if she had a fever. She didn’t. Her appetite, which is usually excellent, was poor. I asked for a urine culture to be taken.

Mom was able to join the rest of the family at my brother’s house on Thanksgiving Day. She was very confused, but her appetite was good and she recognized her grandchildren as family. I noted further UTI symptoms.

My suspicions regarding her infection were confirmed and Mom is being treated.

The moral of this story is no matter where you decide to place your loved one, make sure you can get there to visit on regular basis. Be observant, partner with the staff and say what’s on your mind. Hug your loved one; they’ll feel better, even if they can’t remember why. The emotional part of their brains continues to function long after the reasoning and memory areas are gone.

Have a wonderful holiday season and feel good about the difference you make in the lives of the people who need you most. See you in the New Year!

Posted in aging, assisted living, caregiving, dementia, Family, life changes, long term care | Leave a comment