For Caregivers in Buffalo, N.Y.

all entitled to a meltdown

For caregivers in Buffalo, New York and the surrounding area here is a reminder that meltdowns are not only okay, sometimes they are exactly what is needed in order to carry on.

Any change in routine can wreak havoc for our loved ones. I can only imagine what seeing snow piling up for hours on end and having it cover windows and doors, creating a feeling of being trapped. is having on loved ones with Alzheimer’s disease and dementia. I pray that you have all the medications and all the supplies for everyday living that you need, that there will be no medical emergencies that require you to leave your homes, and that your loved ones remain as calm as possible.

And one more thing; if things become too stressful let it out. As singer, Leslie Gore, once said,

“It’s my party and I’ll cry if I want to.”  https://www.youtube.com/watch?v=XsYJyVEUaC4

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NaBloPoMo November 2014

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I Don’t Think I Can Do This Anymore

I felt that way so many times in the seven years I spent as a caregiver for Rodger. I cried and vented and wished for more wisdom daily. I saw every setback, every new symptom, and every dreadful new diagnosis as a sign of failure on my part.

Scalded by guilt, worn down by his refusal to trust me, I resented him. Fearing where this spiral would take us and knowing any chance of respite care was weeks away, I began to pray. There were no miracles for us. He was not cured. I did not develop the patience of a saint. But it helped me understand, again, that he and I were not alone. And in that moment that’s exactly what I needed.

Dear God

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NaBloPoMo November 2014

An Unexpected Visitor

Owl looks like Rodger

 

When I look at this funny looking little owl I can’t help but smile. It’s as if Rodger has come to pay me a visit. With his stern face, pants riding too high, and arms firmly planted at his sides the little bird looks just like him. And just as it was when Rodger was here, I wonder what thoughts he finds impossible to express.

I believe our loved ones who have passed stay near and sometimes send us a reminder they are watching over us. That may be the case here or it may be only my imagination. Either way it doesn’t matter. I see him today and I am smiling. He is free to soar.

 

Give a Caregiver a Bath

take a bath“November is National Caregivers Month. It is a time to acknowledge the important role that family, friends and neighbors play in caring for sick, elderly and disabled friends and relations.” From the Department of Health – Administration on Aging

It is also a time to support the men and women who are currently caring for a loved one at home. You may have offered to help many times only to be thanked politely for the thought and never taken up on your offer. Some of you may have started to wonder if she really wants help. Maybe she prefers to play the martyr and do it all herself and whine about how hard it is in order to make you feel guilty.

“Why should I keep offering if that’s the way it’s going to be?” you may have asked yourself.

The answer is, “Because she needs help. She wants help. If she doesn’t get help she is going to break under the pressure.” Often she doesn’t know what to ask for.

When my husband and I first announced we were bringing his ill father to live with us, many well meaning people assured us they would be there to help when needed, and they meant it. I remember saying, “We are going to need some time off once in a while so we can go on vacation or out to dinner. It will be great if I can call on you then.”

“Of course,” was the answer, and they meant it.
I didn’t know then that going out to dinner or taking a vacation would not be what I would come to need most. As my father-in-law’s illnesses progressed what I longed for was an hour to take a long hot shower or to soak in tub of water up to my chin until my fingers and toes turned pruney. I’d have done just about anything to stop listening for signs he was in distress or that he somehow knew I wasn’t paying attention and had decided to go down the stairs unattended, risking a fall. Even an uninterrupted ten minutes on the toilet would have been a gift on some days.

I remember one morning in particular. He’d had his breakfast and I had helped him wash and dress. I’d seen to it he had his medications and the TV was tuned to his favorite show. He should have been good for at least thirty minutes. I was about to start a load of laundry when my I felt the sudden urge to pee. I had just settled on the toilet when I heard him calling.
“Bobbi! Bobbi! Come quick, I need you!”

He sounded so frantic I was afraid of what I would discover when I got to him. I jumped up in mid stream, pulled my pants up, and ran up the stairs.
“What’s wrong?” I asked, ignoring the warmth running down my leg.
“The TV’s gone berserk. I can’t get any channels.”

I bit my tongue, fixed the TV, and went to my room for a quick wash up and change of clothes. Clearly it was going to be one of those days.
If anyone had asked what I needed that day the answer would have been quick and easy.

“I need a bath.”

November is National Caregivers Month. The gift of time is precious for those for whom every moment counts. When wondering what you can do to help, consider stopping by a caregiver’s home someday. Maybe she’s wishing for a bath too.

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NaBloPoMo November 2014

A Feeling You Wish You Didn’t Have …

The anger ebbed and flowed. The first time it hit me, right after Rodger returned home from an extensive stay in the hospital, I thought I was losing my mind.

I’d just spent months watching his mental health deteriorate as unbeknownst to me he’d been “cheeking” the medication for his  paranoid schizophrenia and spitting them into the toilet once he got out of my sight. His medication had been adjusted up and then down, brands were changed and consultations scheduled over and over again.

Then it happened. One sunny Sunday afternoon he lost his mind. Accusing me of trying to poison him; he ran down the street, moving at a pace that would normally be impossible for a man nearing 80 years old.

“She’s trying to kill me!” He insisted, shaking with fear whenever I got too close.

He spent eight weeks in the psychiatric ward that time. Discharged on a Friday afternoon he was back in the hospital Sunday evening. He had pneumonia. They had sent him home sick. After a week in ICU he was finally well enough to go into a medical ward. He’d also developed swallowing problems somewhere along the line. He had to have his food pureed and his drinks thickened. He refused to eat slowly and take small bites as the doctor ordered. As soon as his tray arrived he’d grab a spoon and start shoveling the food into his mouth as fast as he could and then he’d choke. So a nurse fed him each morning and I made sure I was there for lunch and supper. Three weeks later he was finally well enough to go home. Once there he seemed determined to start the dance all over again.

“I can take my medicine myself,” he declared almost immediately upon returning home.

The anger reared its ugly head for the first time as I contemplated the downward spiral that would inevitably ensue if he were allowed to have his way.

I tried to pretend it wasn’t there but each time he tried to convince me to give him his pills it grew stronger. I was royally ticked off that he would even try to manipulate me again. I knew he would again lie and insist he was taking his medication when he wasn’t. I was furious that he would subject me and his son to sleepless nights and hours of driving to and from the hospital to assure he received proper care. I resented that he seemed to think he was smarter than me.

There were moments when I had to walk away as soon as he entered the room. I didn’t even want to look at him. I was racked with guilt and questioned my basic humanity. How could I possibly be angry with this sick old man? The guilt was overwhelming at times. I prayed, I vented in the car when I went to the grocery store and cried a lot.

I finally got some relief when I admitted my feelings to my husband.

Mike assured me that it was normal to feel the way I did; that the job I’d taken on was harder than anyone could imagine and what I was feeling was normal. I had nothing to feel guilty about. He took a couple of days off from work and encouraged me to get out of the house.

“Go see a movie. Get a massage. Pamper yourself,” he whispered as I cried on his shoulder, relief mixing with the overwhelming sadness that I finally allowed to engulf me.

I couldn’t concentrate on the movie. I spent the entire time in the theater trying to figure out what was wrong with me. I passed on the massage. I don’t like strangers touching me. But I did go to the gym. An hour of aerobics helped ease the tension from my shoulders and neck. It felt good to sweat and push myself again. The next day I went for a run on the treadmill. It was there that it all came together for me.

I wasn’t just mad at him for trying to take control of his meds. I was mad at him for tricking us and causing so much trouble but I was really mad at him for not appreciating all I had done and all I had been through. While I was busy caring for him I’d lost my own mother to non Hodgkin’s lymphoma. She was gone and he was still here. She took all her treatments and she died. He refused to do what he was supposed to do and I got to nurse him back to health. It wasn’t fair. He should be fighting with all he had just as she did. If anyone should still be here it should be…

In that moment I heard a soft voice whisper… “It’s not up to you to decide who lives.” And then I heard a short and very special phrase that rings true no matter how often it’s repeated. “Let go and let God.”

I found myself nodding my head in agreement and moments later I began to feel better. I was able to go home refreshed and take care of Rodger again.

It’s not a cure-all. The anger and resentment still came back sometimes when he was acting out. And I’d even gone so far as to tell God he had better get busy as I’d let go a while ago and he didn’t seem to be doing anything to help at that time. But finally recognized it for what it is.

Rodger was doing the best he could with a mind that was failing in spite of all the love and care and medication he was getting. And I was doing the best I could in spite of all my weaknesses and doubts. And God? He was there running alongside me on the treadmill, reminding me to take care of myself too.

So this is my reminder to you. Take care of yourself as well as you take care of your loved one. Go to a movie, get a massage, pray, get some exercise, sing at the top of your lungs, sob in your best friends arms, whatever it takes – do it.

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What If I’m Next?

What if it happens to me? I’m scared. I know too much. I’ve seen the deterioration. I’ve heard the rants and the accusations.

“She’s poisoning me. She never gives me any food. I’m a prisoner here.”

When I wake in the middle of the night and get up to pee will an alarm start shrieking, scaring me so I wet my pants? I don’t want someone else to bathe me. I can’t bear the thought of anyone seeing me at an advanced age, withered and naked. I’ll probably fight, kicking and screaming, if they try.

What about all those pills? What will they do to me? Drug interactions can make things much worse. Remember, I know too much. I’ve seen it. I won’t want to take them.

If I want to leave my room and walk the halls because I’m tired of sitting for hours will people try to confine me and say, “She wanders all the time?”

Being a caregiver was the hardest thing I ever did. It was also a gift to be there for those who needed me. Still, I’m afraid. What if I’m next?

As Iwrite this, I am grateful that my children say they will be there for me. I don’t want to go to a care facility where the names and faces change daily. I’m not comfortable around strangers now. I can only imagine how much worse it would be then.

I want to know. I need to know. Is Alzheimer’s and dementia hereditary?

***

According to information posted on the Alzheimer’s Association website, the majority of dementia is not inherited. The article written by, Professor Nick Fox, Honorary Consultant Neurologist at the Institute of Neurology in London says in part:

“Many people fear that Alzheimer’s disease in the family may be passed on to children and grandchildren. In the vast majority (99 per cent) of cases, this is not so. Like many conditions, having Alzheimer’s disease in the family does very slightly increase the chance of people in later generations getting the disease.

The most important risk factor for Alzheimer’s disease is age. Because Alzheimer’s disease is so common in people in their late 70s and 80s, having a parent or grandparent with Alzheimer’s disease at this age does not change your risk compared to the rest of the population.”

***

Reading that article and others on the subject, I feel better. But, it also goes on to say,”There are some forms of dementia that are inherited.”  As far as I know, there is no indication any of them run in my family. I’m relieved for now but I know every now and and then I’ll begin to wonder …

The entire article referenced in this post can be read here:  http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=917

For all of us, for all forms of dementia, I pray a cure is found soon.

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NaBloPoMo November 2014

 

 

Pick Out the Splinters

splinters in your butt

Caregivers, you know who I mean. The people who call to question and criticize what you do and how you do it.  The family members who drop by once or twice a year and spend an hour or so before heading out  to a restaurant for dinner or leaving on a fabulous vacation.  The ones who can’t help you because seeing Mom or Dad like that is too hard for them.

These are the same people who say, “Please let us know what we can do to help,” but are never available when you need someone to take over for a day or two so you can get some much-needed rest.

We have all dealt with the splinters. If we don’t pick them out in time the wound caused by their careless dismissal of us and our loved one festers and makes life even more difficult for us.

I hope when that happens you will remember this funny little cartoon and smile and feel a bit better, even if only for a moment. You are not alone.

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NaBloPoMo November 2014

A Prayer for the Caregiver

As a caregiver I spent a lot of time praying. I doubted my ability to carry on and castigated myself each time I lost patience or failed to protect my father-in-law from another setback. While I recognized his frailty I forgot about my own. I expected perfection where there could be none. I prayed for guidance and asked God to show me the path he wanted me to take. There were many days when I doubted He heard me. Often I wondered if I was worthy of His help and attention. I cried a lot. But always, when I was at my lowest, help arrived in some form and I knew my prayers were heard. Today I share this prayer for you, the caregiver, so you know you are never alone and you have done well.

A Prayer for the Caregiver

By Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.

For your love, sacrificial, is God at his best.

You walk by faith in the darkness of the great unknown,

And your courage, even in weakness, gives life to your beloved.

You hold shaking hands and provide ultimate care.

Your presence, the knowing, that you are simply there.

You rise to face the giant of disease and despair,

It is your finest hour, though you may be unaware.

You are resilient, amazing, and beauty unexcelled.

You are the caregiver and you have done well.

Prayer shared courtesy of A Place for Mom

The following is an excerpt from Confessions of an Imperfect Caregiver:

There were only two cars in the church parking lot when I pulled in, but considering it was a weekday afternoon, that wasn’t surprising. After dipping my fingers into the holy water font and making the sign of the cross, I slipped into a pew near the front of the church. For several moments I simply sat there, taking in the lingering aroma of incense, candle wax, and furniture polish. …

“Our Father, who art in Heaven,… ” I prayed, the words taking on a new importance as tears of frustration and guilt streamed down my face. “Thy kingdom come. Thy will be done …”

All right, God, if it is Your will that I take care of my father-in-law, I’m happy to do it. But You have to help me. I’m new at this, and I’m afraid I’m not doing it very well. He’s a sick old man, and he’s not trying to be difficult. I know that. So why do I feel so angry?

“… And forgive us our trespasses, as we forgive those who trespass against us.… but deliver us from evil … ” I sobbed, my heart breaking for both of us. Why couldn’t I be stronger?

“Help me to be more patient and understanding. Guide me to make the right decisions when it comes to his care. Help me find the right words to soothe him when he’s confused and frightened. Please take the anger away. It frightens me. It weakens me, and I need to be strong to do this. I don’t want to let Mike down, and I can’t let Rodger down. He has nowhere else to go. Please, hold me in your love and light and show me the path you want me to take. Amen.”

My prayer complete, I struggled to stop crying, but the harder I tried the harder the tears flowed. Just as I began to fear they’d never end, exhaustion and embarrassment forced me to gain control of myself. Get a grip, I scolded myself. You’ve had a good cry, and it’s time to go home.

I’d left my purse in the car and had nothing to mop up the watery mess I’d made of myself, leaving me with no choice other than to wipe my nose on my sleeve. I didn’t notice the near-silent approach of the only other person in the church until a tiny elderly woman, dressed all in black, touched my shoulder and handed me a bunch of tissues.

“God bless you,” she whispered as she turned and walked away.

Yes, God bless me. I sure do need it.

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NaBloPoMo November 2014

NaBloPoMo – A Blog a Day in November

November is a big month for writers. It’s time for NaBloPoMo and NaNoWriMo – National Blog Posting Month where bloggers set a goal to write a post a day in November. For me that’s a big challenge. I try to post once a month but sometimes the days get away from me and it just doesn’t happen. I’m eager to see how this project works out and what effect it will have on my time management going forward.

NaBloPoMo was inspired by NaNoWriMo – National Novel Writing Month wherein writers are challenged to write a novel in the month of November.  This annual contest has resulted in many published novels and inspired thousands of writers to complete their work in progress even if they didn’t finish by the end of the month. I wish all the novel writers and bloggers starting this challenge good luck and good writing.

Here I go.

panic attack

The first time I had a panic attack I thought I was dying. I woke from a restless sleep with my heart racing and a heavy feeling in my chest. Then my fingers began to tingle and before long that sensation moved up my hand and into my arm.  At first confused and then terrified by what was happening I woke my husband. Call 911, something is very wrong! As I waited for the ambulance to arrive my heart raced faster and faster and each time the speed increased I became more frightened. Cold sweat poured out of me. I’m having a heart attack!

This can’t be happening. I have too much to do. I can’t do this to my family. How could my husband cope with the loss and care for his father? I was not ready to leave my grown children or my grandchildren.  I prayed for the ambulance to arrive in time while Mike paced.

“Your heart is fine, the EMT said after examining me thoroughly. What’s going on in your life that’s causing you so much stress? 

Caregivers know the answer to that.  Constant vigilance. Sleepless nights for days and weeks on end. Second guessing by family members who aren’t there every day like you are.  Loved ones who not only resist but openly fight your efforts to care for them. It all piles up and you take it all in. Swallow it down and start another day. Eventually something has to give and your body sends out an urgent signal. I’m in trouble here. And you are. Left untreated the same stress that leads to panic attacks can result in a heart attack. The good news is there is treatment. The key is to understand what is happening and why.

After that terrible scare I read all I could about what had happened to me. I quickly learned to recognize the onset of a panic attack. When I sensed one coming on I’d go to a quiet room, lie down and take slow deep breaths to calm myself. Over time it became easier and the attacks lessened in intensity and duration. Now they occur rarely and dissipate in minutes. I’m lucky. I can control my panic attacks without medication. For some the attacks are so severe and frequent medical intervention is needed. If that’s the case with you, don’t hesitate to consult your doctor and get treatment. You will feel so much better if you do.

****************************

Is it a heart attack or a panic attack? (from HelpGuide.org)

Most of the symptoms of a panic attack are physical, and many times these symptoms are so severe that people think they’re having a heart attack. In fact, many people suffering from panic attacks make repeated trips to the doctor or the emergency room in an attempt to get treatment for what they believe is a life-threatening medical problem. While it’s important to rule out possible medical causes of symptoms such as chest pain, heart palpitations, or difficulty breathing, it’s often panic that is overlooked as a potential cause—not the other way around.

A panic attack is a sudden surge of overwhelming anxiety and fear. Your heart pounds and you can’t breathe. You may even feel like you’re dying or going crazy. Left untreated, panic attacks can lead to panic disorder and other problems. They may even cause you to withdraw from normal activities. But panic attacks can be cured and the sooner you seek help, the better. With treatment, you can reduce or eliminate the symptoms of panic and regain control of your life.

For more information about panic attacks and how to treat them go to http://www.helpguide.org/articles/anxiety/panic-attacks-and-panic-disorders.htm

To read more about Bobbi and her experience as a caregiver purchase a copy of her book, Confessions of an Imperfect Caregiver. Blog followers receive a discount when ordering directly.

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NaBloPoMo November 2014

Halloween with Rodger

 

Halloween candy

“What time do the kids come?”

My father-in-law asked that same question every year on Halloween.

“Six o’clock.”

“Good. I eat at four. I’ll have time to get ready.”

I wondered what he did to get ready for when he did come down from his room at precisely 5:45 he looked no different than he had earlier in the day. He’d be wearing the same brown flannel shirt tucked into brown pants along with the black shoes and white sox he’d put on when he got up in the morning. He would have shaved that day so his grey stubble wasn’t as pronounced as the day before, but not because of the holiday. He shaved every three days and had for years. His hair would be slicked back as always and his face would hold the same dour expression that greeted me every day.

“I hope I don’t get too tired. I’m not as strong as I used to be.”

“You don’t have to give out the candy. I can do it,” I said.

“No. I have to. It’s my job,” he insisted.

“Why? I did it before you came to live here. I can do it now if you want to stay in your room.”

“I do it!” he snapped before moving a dining room chair close to the window and peering out to see if any young ghosts or witches were coming.

Seeing the street was still clear of trick-or-treaters he peered into the large wooden bowl full of candy and started to mumble.

“I hope this is enough. She didn’t buy enough. Oh no.”

“I have more. That’s all that will fit in the bowl for now. I can add more as we need it.”

“I can add more. It’s up to me. What time do the kids come?”

“Six o’clock. If you get tired before they stop coming let me know. I’ll pass out the rest.”

“I have to do it. I give them each one piece, right? What time do they come?”

“They should start coming at six o’clock. Give them more than one piece, we have plenty.”

“Two pieces. I give them each two pieces. What time do they stop coming? I hope I don’t get too tired. I’m not strong like I used to be.”

“You don’t have to do this. I can do it if it’s too much for you.”

“I told you, I have to do it. It’s my job”

“Why?”

“Because I’m the oldest and the oldest gives out the candy.”

I didn’t know what to say to that. In his mind that’s the way it should be. Every year, as long as he was able, I let it him pass out the candy. I kept an eye on him and when it was clear he was tiring I made sure the bowl emptied quickly, turned out the light and helped him back to his room. He always slept late in the morning and woke proud that once again he had done his job.

The kids still start coming around six o’clock and the big bowl still stands ready at precisely 5:45. There is plenty more to refresh the bowl at least three times. So many things remain the same. Something very important has changed. Now I’m the oldest and I give out the candy. I miss him.

To read more about Bobbi and Rodger purchase a copy of her book, Confessions of an Imperfect Caregiver. Blog followers receive a discount when ordering directly.

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