Tag Archives: caregiving

May 7, 2015 · 11:06 pm

Being the ‘angry advocate’ is sometimes necessary

I don’t like conflict. I like things to run smoothly and everyone to do their job. This is especially true during a crisis.

Of course, it is in these tough situations that conflicts and issues often arise.

Ironic door sign

I found out yesterday that after waiting over a week for hospice to begin, with my mom reporting an 8 out of 10 on the pain scale during every home health visit, that the hospice transition process had not even started! The home health agency told me I needed to talk to my mother’s primary care physician. But last week, when I was at the doctor’s office, I asked about starting hospice and the doctor’s staff told me the home health agency needed to fax them paperwork.

I was beyond frustrated. I don’t get angry very often but I was really furious. My mom had suffered needlessly for over a week because these two entities that work with each other all the time can’t get their acts together?

Since the local home health agency is now part of a larger corporation, I filed a complaint at the corporate level. I don’t generally like to throw people under the bus but I wanted action.

And it worked. Tomorrow a staff member is coming to transition Mom to home hospice.

I just wish I had been the angry advocate sooner.

2 Comments

Filed under Awareness & Activism

Tagged as , ,

March 26, 2015 · 8:11 am

A simple act of kindness is often greatly appreciated

Recently, I visited my mom. It was the first time I would be meeting her personal caregiver. I’ll call her Debbie (not her real name.) Mom had raved about how wonderful Debbie was and how much she liked her.

hands

We’ve all heard horror stories about the other kind of caregivers, those who steal from clients or abuse them. I was relieved that Mom was happy with her caregiver. I think the service has lifted her spirits and helped take the burden off of her when it comes to housekeeping and grocery shopping. In short, personal attendants can help my mom live independently longer.

Debbie made me comfortable immediately. She is warm and kind and doesn’t let Mom get down on herself. But she also isn’t fake in her positive thinking, instead she is encouraging. She is an ideal match with my mom, who is set in her ways and finds changes in routine stressful. Debbie knows how to keep my mom on the right track.

I thought the least I could do was get Debbie a thank you card, to let her know I appreciated her taking good care of my mom. Apparently it’s a struggle to keep gas in the car on her wages, and she doesn’t get reimbursed for mileage. She was one of the few people who was almost looking forward to jury duty, because it would pay the same/better than what she earns normally!

So I gave Debbie the card and she told my mom later that she was so touched that she cried after reading it.

Caregiving is a job where you may not receive much thanks or positive feedback. Showing a bit of appreciation can go a long way.

1 Comment

Filed under Awareness & Activism

Tagged as , , , , ,

March 22, 2015 · 1:58 pm

Caregiving tip: Change isn’t easy for seniors

I’m sure we’ve all heard of the saying, “She is set in her ways.” This tends to become more true as one ages. Our elderly loved ones have a certain schedule, or a certain way of doing things, and a disruption of that schedule can cause them great stress.

I’m a little like this already and I’m only 40!

But what made this clear to me was spending time with Mom this past week. We still have not figured out what is wrong with her, but we finally were able to see the specialist. He wants to rule out the return of cancer, so he has ordered a colonoscopy (ugh) and an EGD. Mom wasn’t thrilled with the idea of more testing and the preparation involved for it but knows it is necessary.

question mark box

If there is no cancer, her abdomen muscles can be surgically repaired so her stomach doesn’t protrude, which seems to cause her constant discomfort. But first, we have to increase Mom’s weight and strength. She is down to 100 pounds (has lost a shocking 30 pounds in 8 months.)

The specialist is a young guy that is into natural supplements in addition to medicine. While I truly embrace this approach, when he recommend my 77-year-old Mom start juicing, I had to force myself not to laugh. While I don’t doubt the benefits of fresh juice (though I do think the benefits are overstated and the high sugar and low fiber in juice is a concern), the doctor clearly needs to consider a patient’s age and situation when making care recommendations.

He knows Mom lives alone, and to ask a frail old lady to go buy a bunch of produce, wash it and process it through a juicer, and then go through the tedious clean up progress is totally overwhelming. I purchased her some pricey but convenient organic juice mixes instead.

The doctor also recommended spirulina supplements. After researching I’m on the fence about the benefits, but at least this is an easy step for Mom to take (comes in capsule form.)

He also recommended upping her daily Ensure drinks. I found a Boost very high calorie variety that has 530 calories. Also I got her a flavorlees calorie supplement that you mix into food. These are small steps that Mom can handle on her own.

Still, when I called her after returning home, she was overwhelmed by the new medications ordered by the doctor and the supplements I had sent. She said she knows everyone is trying to help her, but it is a lot to process.

And so it is. Just something to keep in mind when we introduce change to our loved one’s routine. Try to make it as simple and smooth as possible, and take time to explain why the change has to occur. Change can be hard for anyone, but as caregivers we can try to soften the blow.

5 Comments

Filed under Memories

Tagged as , , , ,

March 9, 2015 · 7:31 am

The constipation chronicles

All of those health experts weren’t kidding when they kept saying, “Eat your fiber.”

If you are caring for a senior now, carefully monitor their fiber intake. The typical American diet is woefully deficient in fiber.

My mom actually eats healthier than most people her age. Lots of vegetables, oatmeal, nuts, etc.

Slice of brown bread

But [and pardon if it is TMI] constipation has been the bane of her existence this past year.

And the bane of mine.

Last week was a very busy week, as I’m training someone new at work. I’m working late night weekend shifts at the moment, and of course, there was the time change. I knew I wasn’t going to get much sleep Sunday. I finished work after midnight (which I was already computing in my mind as 1am.) It was after 2am when I went to bed.

Then my phone started buzzing at 5:50am. Mom.

Of course, my heart started pounding as I rushed to answer the phone from a dead sleep.

Mom said her stomach hurt and was bloated. She couldn’t sleep. Yes, she may have skipped her tea (a fiber/stool softener liquid that was prescribed for her) one day.

I told her to take some Milk of Magnesia and tried to go back to sleep.

I’m still convinced there is something else besides old age causing Mom’s irregularity, but it has become a chronic health issue that must be managed aggressively.

Many medications and common health issues can cause constipation, and it can cause a great deal of suffering.

There are many ways to add fiber to the diet, from supplements to naturally high in fiber foods. The key is finding sources of fiber your loved one enjoys (or at least tolerates) on a consistent basis.

How have you dealt with this problem as a caregiver?

3 Comments

Filed under Awareness & Activism

Tagged as , , ,

February 7, 2015 · 10:56 am

Another heart-stopping false alarm

So I finally was able to set my mom up with a personal care service, in addition to the home nurse visits. The personal care attendant was supposed to take my mom grocery shopping yesterday afternoon. Around noon, I was at work and received a call from a number that I did not recognize but with the same area code as where my mom lives.

I answered and it was the woman who runs the personal care agency. She said the attendant going to see my mom finished up a bit early with her previous call and she headed over to my mother’s house a bit early. But she knocked on the door multiple times and there was no response.

alarm bell

So of course I go into immediate panic mode in my head. Just like in those commercials, Mom’s fallen and she can’t get up!

I told the woman I would try calling her phone number and if she didn’t respond, there is a house key in a lockbox on the property.

I could feel my heart pounding with every ring on my mom’s line. Finally, Mom picked up. She sounded a little frazzled.

Turns out Mom was getting ready in the bathroom which has a loud heat vent. She couldn’t hear the knocking.

So Mom was okay, just a bit annoyed that the attendant was early … don’t mess with elderly people’s schedule! This is true also for those with dementia, any change of plans or a schedule can really upset them. It’s something many of us caregivers have learned the hard way.

It took a while for my heart rate to return to normal, but so grateful that it turned out to be a false alarm.

What kinds of false alarms have you experienced as a caregiver?

1 Comment

Filed under Memories

Tagged as , , , ,

November 14, 2014 · 8:00 am

Guilty of a totally unnecessary caregiver panic attack

So about 30 minutes into my flight to visit my mom, I took my phone off airplane mode to enable my Bluetooth headphones. (I know, slap my hand, that is an in-flight no-no.)

When I did so, I noticed the voicemail icon was lit up. When I went to see the time the voicemail was recorded, it was when I was at the airport, so I was surprised that I had missed the call. When I checked the phone number of the missed call, it was my mom’s home phone number. In fact, there were two missed calls from her, about 30 minutes apart.

plane sky

If Mom was calling me early in the morning, something HAD to be wrong.

Even though I knew it wouldn’t work, I tried to access the voice mail. No-go, despite my phone still showing a 3G signal.

Fortunately, the plane did not suffer from any issues due to my actions.

But for the rest of the flight, I was frozen with terror. My mind began spinning with all sorts of worst-case scenarios. Knowing Mom has been suffering from this mysterious ailment (most likely a hernia) for some time, I feared she had developed more severe symptoms. She called me wanting to know if she should dial 911 and now was waiting in agony for my reply. Or she had called 911 and was being taken to the hospital and I was several hours from arriving! There was nothing I could do up in the sky but wait it out. I had a two-hour flight, but it seemed like 20 hours.

Finally, we land and I immediately turn my phone back on. I listen to the voicemail. It was from the airport shuttle, confirming my ride. Whew, ok, that was a relief. (They usually call to confirm the day before.)

But what about the mysterious phone calls from Mom’s number? I called her when I got inside the terminal and all was (relatively) well. She had not called me. When I thought back on it, there were no missed calls from the shuttle company. Somehow, my phone read the shuttle number as my mom’s number (same area code, but quite different numbers.)

The point of this story? Caregivers have enough real crisis situations to deal with. Don’t invent imaginary ones, especially when you up in the clouds, helpless to take action.

2 Comments

Filed under Awareness & Activism

Tagged as , ,

November 4, 2014 · 8:00 am

Being in the moment

As caregivers, it’s not just our bodies that are put to the test, it’s our minds as well.

I find that I spend very little time in the moment. Part of my mind is always mulling over the latest brewing health crisis or fragile financial state.

2014-11-03 14.59.09-1

2014-11-03 14.59.12-1

Today I decided to go for a long walk in the park. After a raw and cold weekend, today was sunny and beautiful. I was near the end of my walk when I came upon a man feeding the ducks and geese by the park’s lake.

In the middle of the quacking flock, a young blue heron stood stock-still. It seemed very focused on the water, and while completely still, ready to spring into motion.

The man feeding the birds said that the young one had not learned how to hunt yet, but was practicing by stalking prey in the water below.

I allowed myself to just absorb the scene for several minutes.

My patience paid off. Eventually the young bird took flight.

An hour’s respite turned out to be more rewarding than I could have imagined. Sometimes it is the simplest things that can make the biggest difference in our daily routine.

How do you spend precious solitary moments away from caregiving duties?

2 Comments

Filed under Memories

Tagged as , , , , ,

August 23, 2014 · 10:00 pm

Dealing with dementia in an intimate relationship

Many of the people I follow on WordPress are dealing with a parent or grandparent with dementia. A few are dealing with a spouse, and with this, comes an entirely different and complex set of issues.

I finally got around to reading the memoir, “Jan’s Story,” by CBS correspondent Barry Petersen. The book has generated some controversy. Petersen’s wife, Jan, was diagnosed with early-onset Alzheimer’s at the age of 55. Petersen’s account of how Alzheimer’s impacted their relationship is frank and heartbreaking. After arranging for her care at home for several years, he finally places her in a residential facility as the disease progresses. Eventually, at the point where his wife barely remembers who he is, he begins a tentative new relationship with another woman.

jans-story-cvr

It’s the latter details that many find distasteful. Some of the couple’s friends turn against him, and some readers of his memoir feel he is selfish in his actions.

I certainly do not feel I am in the position to judge other caregivers, as there are many things I would do differently in dealing with my father’s dementia. I think hearing the male perspective is important when it comes to being a caregiver of a spouse with dementia. The breakdown of intimate relations is a side effect of dementia that many would rather not discuss. For Petersen, the loss of intimacy with his beloved partner is devastating. The transformation from lover to parent is traumatic. The difficult decision he makes are agonizing for him and I don’t believe were made on a whim.

The book brings up a host of interesting questions. Especially with early-onset Alzheimer’s, should the caregiver be left in relationship limbo when it may take a decade or more for the disease to finally cause physical death? As long as one provides good care for their spouse, is it acceptable to find affection outside of their relationship?

For some, “until death do you part” means just that, no exceptions. I respect that. But dementia has a way of turning the normal way of doing things upside down.

For those wondering, Jan died in 2013, a few years after the memoir was published.

3 Comments

Filed under Awareness & Activism

Tagged as , , , ,

August 16, 2014 · 11:53 pm

Showing appreciation for the dementia caregiver community

A big thank you to Neighbor Nancy and Ann Ahnemouse for nominating me for a Very Inspiring Blogger Award. Nancy I have had previous contact with but I don’t believe I have with Ann, so it was a pleasant surprise to hear she had been following my blog for quite some time. It is yet another reminder of the wonderful community of caregivers waiting to be found in the blogosphere.

The rules are simple:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

7 facts about me:
– I have Celiac Disease, and have been on a gluten-free diet since 2005.
– I’m a cat lover.
– I like my coffee black, no sugar.
– I’m a bourbon aficionado.
– I was born and raised in California, but have no interest in returning.
– A big Greek salad is one of my favorite meals.
– Stephen King is one of my favorite authors.

Bloggers you should follow (For sake of time, I have less than 15 but will try to add more soon!)

My Neighbor Miss D Nancy is a devoted elder advocate, and has been the driving force in helping a neighbor in her building who has dementia return to her home after she suffered abuse from family members.
Ann Ahnemouse As I said, this is a new blog for me, but she’s been posting for a few years! Ann writes about her journey with her partner, and how his dementia impacts their lives.
terry1954 I’ve been following Terry’s blog for quite a while. Terry was the sole family caregiver of her brother, who had MSA. He died this year, and while the end of his suffering was indeed a blessing, there is a giant hole left behind when our loved ones depart, no matter the circumstances. Terry is a fearless writer who shares her thoughts on many topics.
Alzheimer’s Speaks: Lori La Bey is a tireless advocate for caregivers. She has a radio show as well!
SaveEveryStep: You should subscribe to this blog for the weekly “Joe’s Letter” post alone. The letters are from the blogger’s uncle from WWII and they are so fascinating! If you love nostalgia, you’ll love her blog, as she often writes about the fashions and music from her childhood and adolescence. But Helen Spencer founded the website, SaveEveryStep.com in memory of her mother. She is giving back to the world by allowing you to capture your own family’s memories and preserve them for free, a useful service to anyone, but especially for families touched by Alzheimer’s and dementia.
Hot Dogs and Marmalade: This blogger’s mother has Alzheimer’s and she writes both poignant and humorous accounts of her family’s life. You’ll have to read her blog to find out the reason for the unusual title of her blog!
My Demented Mom: Kathy Ritchie doesn’t sugarcoat one bit of her experiences caring for her mom, who has frontotemporal dementia. Kathy is in her 30s and is now a mother herself. Her blog is breathtaking in both its agony and in the way she expresses her love and dedication to her mother.
Quilt of Missing Memories: Talk about a family devastated by dementia. Jacquelyn’s father, mother and husband all have a form of dementia. Her father has passed, and late last year, so did Jacquelyn’s husband. I appreciate this blog because of the simple and joyous photos and short poems that are posted on a regular basis.
Lori’s Lane While not a caregiving blog in particular, the blogger did find herself in that role when her husband suffered a serious accident on the job. I love this blog for the insightful posts and the uplifting quote every Friday.

1 Comment

Filed under Awareness & Activism

Tagged as , , , ,

July 27, 2014 · 6:26 pm

Dodging the health crisis bullet … for now

Recently, I wrote about my mom experiencing a mysterious pain in the same general area of her colostomy surgery. She had a few other vague symptoms that warranted further testing. The oncologist ordered CT scans of the abdominal area and the chest.

Unfortunately I had to get back to work so Mom had to manage the scan prep on her own. Even though Mom certainly has her eccentric ways, it is such a blessing knowing that she is still fully capable of handling things outside of her routine, such as going for medical tests. Yes, it was stressful for her, but at 77, she managed quite well.

mom-77-bday

The tests were done right before my birthday, with the results coming back the next week. I admit I spent a pretty good chunk of my birthday weekend mulling “worst case scenarios.” The colon cancer was back. The cancer had spread to another region. What would I do this time? I cannot afford to quit my job again. How would I afford Mom’s care.

Mom had a followup appointment with the oncologist on Wednesday afternoon. I was both eager to hear the results and dreading them at the same time. Finally, Mom calls. For once, she didn’t beat around the bush. (If it had been bad news I had a feeling she would have delayed the announcement.)

All of the tests came back normal. No cancer was detected. Mom was given a clean bill of health. Now of course that doesn’t solve the mystery of Mom’s pain (she insists on calling it a “discomfort.”) But the pain has not increased in intensity so far and it doesn’t stop her from going about her life.

So a sigh of relief, for now. As caregivers we are always ready for the next health crisis. But we also learn to appreciate those good days a bit more.

Leave a comment

Filed under Awareness & Activism, Memories

Tagged as , , ,