Tag Archives: caregivers

alzheimer's disease

5 Tips for Helping Kids Cope with Alzheimer’s Disease

Anyone who has any experience with Alzheimer’s Disease will tell you it doesn’t just affect the patient. It affects the entire family. So, how do you talk to children about Alzheimer’s? What is important for them to know? Are there things you shouldn’t tell them? How do you help them cope with the impact of the disease on their lives?

These are all questions we were faced with while caring for my mother over the course of five to six years. My children were 11, 8, 6, and 2 when she was first diagnosed with dementia. Out of that experience, I offer the following tips. Hopefully they will provide a place to start if you’re looking for answers.

Put the Kids on a Need to Know Basis

At first, there wasn’t a whole lot to say, and the kids didn’t notice much of a change. It was early and they saw her several times a week, so decline was less noticeable. My mom was still living fairly independently. I just started keeping a closer eye on her and how things were going. By not sharing too much, too soon, you’ll prevent months of unnecessary worry on the part of the kids.

Keep it Simple and Age Appropriate

As time went on, and my involvement grew, the need for sharing information with them increased. I presented simple explanations for the simple things. “Granny is forgetful. I have to go over every day to make sure she takes her medicine.” or “Because Granny is forgetful, she will tell you things over and over. Please be patient with her and polite.” And, more detailed information for more complex issues like taking the car and the cigarettes away. In these cases, I explained the reasons why it was necessary to take the steps I took which were all directly related to her safety.

Let Them Help

Sometimes, the kids don’t have a choice. They’re not the decision makers on the big stuff. They’re along for the ride.

As the time when she would no longer be able to live independently approached, we began preparing them for the day when she would move in here with all of us. They were 13, 10, 8, and 4 then. Their world was going to be turned upside down. We had been in the middle of redoing the boys’ bedroom. We stopped midway through and turned it into a haven for my mom and the boys ended up with a makeshift bedroom in our basement.

I remember that conversation well. The boys and I were sitting on their beds in the basement and we talked about how it was going to be crowded and inconvenient, and hard, but that this is what families do for each other. When I mentioned that one day, the boys and their sisters may have to take care of their dad and me in a similar way, my oldest boy turned to his younger brother and said, “Yeah, that’s on you.” (That oldest boy, by the way, was the most patient and compassionate caregiver you would ever find when push came to shove.)

But, in other ways, they can help, they can have a voice, and they want to help. Look for opportunities to involve them in an age appropriate way. Older children can fix simple meals or snacks, or even help to feed their loved one. Younger children can read a story, sing a song, or work a puzzle. Anyone can offer a hand as the patient is moving from point A to point B.

Honor the Pre-Dementia Relationship

My children each had a unique relationship with their granny. When my oldest was 10 months old, she retired to take care of him while I worked full time. Each week, he spent more waking hours with her Monday through Friday than he did with his father and me. When she was with him, he was her sole focus. She didn’t clean, or pay bills, run errands or meet with friends. She poured her whole self into him all day long. A very special bond and many memories were created. Because he was the oldest, he has many more memories of her before the dementia than everyone else.

My second son had an equally special bond with her. She cared for him full time from birth until he was 2 1/2, and then part time when I reduced my work hours. But, he never had her all to himself.

By the time my oldest daughter was born, the first born was off to kindergarten and I was working part time. Due to the school bus schedule, the childcare moved from my mom’s house to our house. While my oldest daughter remembers her granny in those early years, she doesn’t have many memories of fun times at Granny’s house.

And, by the time the baby of the family came along, dementia was lurking in the shadows. My mom couldn’t take care of a baby anymore. Our youngest has no memories of “fun granny” as she put it in her funeral speech.

Especially, after she moved in with us, this history, these unique relationships, became vitally important. During the difficult times, we could reminisce about the things they used to do together whether it was walking to the store to get a donut in the morning, practicing their word-ring as she taught them to read, or a favorite book they shared. And, for the youngest, realizing she didn’t have that warm and fuzzy history to draw on made her utter exasperation and occasional outbursts understandable.

Nurture the Post-Dementia Relationship

kids and dementiaAlzheimer’s Disease sufferers often find comfort and enjoyment being around young children and young children can still benefit from having a relationship with their elders. Encourage them to read books together or play simple games. Or to just cuddle. Although the memories of the Alzheimer’s sufferer are fading, new, fond memories can still be formed for the young people in their lives as evidenced by this excerpt of our 7 year old daughter’s speech at my mom’s funeral.

Even though I didn’t know the fun Granny, the cranky Granny was still fun. I loved her so much. There were good times and bad times. The good time was when she was reading books to me and then she helped me get a good grade. –, grand daughter of an Alzheimer’s Disease sufferer, age 7

Throughout the journey, keep the kids involved and the lines of communication open. Remember, it’s their journey, too.

Random Acts of Kindness for the Caregiver

“Mom, there’s a blue bag in the mailbox. It looks like a package,” my daughter said as we drove down our street on the way to school. I assumed she meant the newspaper box and it was the blue bag of ads. I told her as much and said, “I’m sure it’s not as exciting as you think, but I’ll look when I come home.”

random acts of kindnessWell, much to my surprise, it was a gift bag with my name on it in magic marker. I will admit, there was a moment of hesitation fearing that it was a bag of poo (not everyone loves me!) but was delighted to find an encouraging note, prayer and a book of prayers of renewal and restoration for caregivers. It was left by an anonymous friend who is aware of my struggles and took the time to send some encouragement my way.

I was so deeply touched by this random act of kindness! It’s inspired me to write this post. Not because I hope more people will do nice things for me, but because it meant so much to me and I know there are so many caregivers out there who would benefit from a random act of kindness shown to them.

Do you have a friend or family member who is a caregiver? I’m going to give you a laundry list of ideas to encourage him or her in a minute but, first, a couple notes about your friend, the caregiver.

Your friend, the caregiver, is used to doing things for other people. She is not accustomed to or comfortable with asking for help from others. She is likely to decline your offer the first time, maybe even the second time. Be persistent. She probably really wants to say yes!

Your friend, the caregiver, feels isolated and lonely. She doesn’t get to go out with friends like she used to. If she’s married, she doesn’t get date nights like she used to. She probably doesn’t invite people over as often as she’d like either.

Your friend, the caregiver, wants to hear about your life, yes, even your problems! Sometimes, the best way to get out of a woe-is-me, my-life-is-so-rotten funk is to focus on someone else’s “stuff” be it good or bad.

Your friend, the caregiver, is busy and tied down. Always be ready with two or three dates for whatever it is you’re planning. Be mindful of the fact that it’s probably hard for her to get away. If possible, work with her spouse to schedule times that she will be able to leave. Alternatively, allow time for her to make arrangements for respite care so she can go out with you or offer to stay with her loved one while she goes out.

Ready to perform a random act of kindness for your friend, the caregiver? Here’s that laundry list to get you started:

  • Write an encouraging note–and may I suggest snail mail? Admit it–it’s the best!
  • Send flowers.
  • Pick up a hanging basket or some annuals for her yard. Wear your garden gloves and take a little hand shovel with you when you deliver them so you can plant them for her.
  • Fix dinner for her family. Don’t ask her if you can. Tell her you are and give her a choice of a couple different meals.
  • Schedule a mani-pedi date for the two of you.
  • Give her a gift-certificate for a massage or salon.
  • Schedule a girl’s night out for a group of her closest friends.
  • Show up with lunch.
  • Surprise her with a certificate for housecleaning services or form a cleaning posse with some of her besties.
  • Put together a DVD care package with some flicks starring her favorite hunk. Don’t forget the popcorn!
  • Take her to the local comedy club. She needs to laugh!
  • Buy her a couple books and a snuggly blanket she can curl up with.
  • Do her laundry! Maybe not the delicates and whitey-tighties, but you can fold towels, right?
  • Gift her with some spa products in a stress-relieving scent.
  • Stay with her loved one for a couple hours so she and her husband can go to dinner.
  • Go to the grocery store for her.
  • Pray with her and for her.

What random acts of kindness can you add to this list? Even the smallest gesture will bolster her spirits, renew her energy and help her to not feel so alone!

 

Free will vs. Responsibility

Being a caregiver is not only a lot of work and a lot of stress, it is a lot of responsibility. Depending on the level of care your loved one needs the responsibility may range from simple medication reminders to complete, round-the-clock-do-everything-for them care.

When you sign on to be a caregiver, you are signing on to fulfill the responsibilities with the patient’s very best interests at heart.

Everyone approaches caregiving differently. Every situation is different. The existing relationship between caregiver and patient, the amount of care needed, the disposition of the patient and much more are all factors that shape the approach. And, no matter how it’s done, it’s difficult. That’s why 99% of the time, I adopt a “Judge not, lest ye be judged” attitude.

medication and dementiaExcept for this: a caregiver of a dementia patient recently told me that whether or not her loved one takes her medication is the patient’s “own free will” because she “can’t force them down her throat” so she sets the meds (and there are many!) out every morning and whether or not the loved one takes them is then up to the loved one and not the caregiver.

Poppycock!

The person with dementia lacks the rational thought, the understanding of the consequences of not taking the meds or the memory to know it must be done. No, she can’t force them down her throat, but she can give them to her and sit with her until she finishes taking them. She may be able to crush them into her food if necessary. There are ways to fulfill this responsibility to ensure the health and well-being of the patient.

Another of my mantras of caregiving is “Pick your battles.” Is it ok if my mom wants to wear the same shirt for three days? As long as it’s reasonably clean, sure! But when it comes to taking her meds, it’s not up for discussion.

If you’re experiencing difficulty getting your loved one to take his or her medication, check out these articles for tips, and by all means, if you have tips you’d like to share, leave them in the comments!

How to get an Alzheimer’s patient to take their medication

Medication Safety and Alzheimer’s

When Elderly with Dementia Refuse Pills

Dementia and Incontinence

Over the last few weeks, my mom’s incontinence has gotten MUCH worse. I would classify her as almost completely incontinent of bladder and about 50% incontinent of bowel. While these issues have been creeping up and steadily getting worse, they’ve been fairly well managed because she’s been willing and capable of changing her own briefs. When we’d notice she’d had an accident, we would ask her to change her pants and she would.

incontinenceOver time, the “passive” assistance she’s needed with this has increased. We used to keep the briefs in a drawer in the bathroom. Then we kept the package on the floor in the bathroom. But, she started hoarding the briefs by taking a handful at a time and putting them in her bedroom. The problem came in when she’d go into the bathroom with a full brief and no clean ones in sight. Lacking the ability to solve that problem, the dirty brief was left on and leaks and accidents occurred. We are now vigilant in making sure there is always one, and only one, brief sitting right on the sink next to the toilet.

Now, she needs “active” assistance. She has a hard time figuring out how to get the brief off and a new one on. That goes hand-in-hand with the job of care-giving. No surprises, it’s part of the job.

BUT, often, she flat-out refuses to take it off. The other day, my husband and I spent the better part of 6 hours trying to get her to change it.

Pause for just a moment and think about that smell. If you’ve never encountered it, you’re blessed. If you have, you know it’s a gagging, hold-your-breath-as-long-as-you-can smell. It permeates the house. Forget the job of cleaning her up, that’s nothing compared with enduring the smell while trying to convince her to change.

Maybe you’ve never cared for an incontinent elderly person, but if you’ve cared for a baby, you know diapers only hold so much. If they aren’t changed, eventually they leak. Through the clothes. Into the bedding. Into the upholstery.

Adjusting to this is rough. I don’t cry very often about this whole caregiving thing. I’m not always happy about it, but it’s my job and I do it. I’ve had complete hysterical melt-downs twice in the last three weeks.

She’s been averaging 3 pair of slacks a day. Changing the sheets is about an every other day job now. I clean the toilet and bathroom floor as many as 4 times a day. Twice in the last two weeks she’s fallen down in the bathroom. Thankfully, she hasn’t been hurt. In both instances, her pants were half up–or down. We aren’t sure, but we think she has lost her balance trying to get the pants up after she goes.

There are so many factors that could be at play and it’s so frustrating that she can’t really communicate what they are. Here’s just a few thoughts and possible solutions. Even if they’re strategies that aren’t working for us, maybe they’ll work for you and your loved one.

  • She’s afraid of falling. We’ve installed a raised toilet seat with grab bars on the side. She seems to not really know what to do with it, but I’m working with her to teach her to use the grab bars.
  • Her pants might be too difficult to get up and down. She wears only elastic waist pants, so I’m not sure what else we can do here, but if your loved one is still wearing pants with zippers and buttons and snaps, it might be time to change.
  • Her brain might not be receiving the signal that she needs to go. Not a thing in the world we can do to fix that, but encouraging her to go to the bathroom on a regular schedule might help. We just have to figure out how often that will need to be.
  • She’s lost the ability to solve the problem of cleaning herself up and attending to the details of putting on a new brief when it is wet. We accompany her to the bathroom when necessary and stand outside the door to listen other times to see if we need to intervene.

As always, I encourage you to do your own research. Both Alz.org and Caring.com have great resources on the topic of incontinence and Alzheimer’s. Of course, you should also talk with your loved one’s doctor. There are medications to help; however, like any medication, they involve pros and cons, risks and benefits and there is no single solution for every patient.

One final and important note…if the onset of incontinence is sudden, it probably isn’t a result of the dementia, but rather a symptom of an infection. Please get your loved one into  the doctor promptly!

If you have some tried and true strategies for caring for an incontinent person with dementia, please share in the comments!

 

No sissies allowed

“Old age is not for sissies.” My mom says it all the time. She’s right.

You know what else is not for sissies? Caregiving.

CaptureIf we are lucky enough to have our parents live well into old age, chances are we will all take on the role of caregiver at some point. Some of us will enter it willingly, others reluctantly. Some will only spend a few months in the role, others may spend years. Getting started is overwhelming. Heck, the whole thing is overwhelming!

When our parents reach the point that they need more than just our physical assistance with tasks they used to do themselves (i.e., yard work, more difficult household chores, etc.), knowing where to start and how to begin is daunting at best. Often, children live in denial because they simply don’t know what to do first. And, if the parent is also in denial and refusing help, the issues are compounded.

I can’t claim to be an expert, but I’ve been on this journey for about five years now. I’ve made mistakes, done a lot of the right things and learned an enormous amount. What follows are some of my best “getting started” tips. And by getting started, I mean BEFORE you’re really needed as a caregiver.

Schedule a family meeting

I’m an only child. If you are, too, you can skip this step. That’s probably the only pass you’re going to get along the care-giving path! For the rest of you, sit down and talk about it! Don’t wait until an event (illness, fall, stroke, etc.) forces the issue. Sit down together when emotions aren’t running high and no one is stressed out by the circumstances and have a frank discussion. Who is willing and able to do what? What plans need to be made about future living arrangements? How will any care be financed? Include your loved ones in the conversation if possible. There is a wealth of information on family meetings on the internet. This is one article I like.

Consult an elder-care attorney

Learn the differences between medical and financial powers of attorney and guardianship. Figure out what is likely to best suit the needs of your situation. This article offers an overview of the difference between POA and guardianship, but each state is likely to have its own nuances. If these documents aren’t already in place, do it! Don’t wait!

Meet your loved one’s doctors

Attend a routine appointment with your loved one. Accompany him or her into the exam room to meet the doctor. Allow your loved one to introduce you and explain you’ll be the caregiver when the time comes. Make sure you are listed on all medical records as someone to whom the provider can release information. HIPPA laws will make it very difficult for you to help your loved one if this is not in place. Further details can be found in this article.

Discuss financial arrangements

Whether you meet with your loved one’s financial advisor, attorney or simply go over documents with your loved one, it’s important to know what assets are available to finance the care of your loved one, where they are held and how to access them when they’re needed. Eldercare.gov offers some tips here.

Explore Resources

Well before the tough decisions need to be made, begin looking for support services such as mobile meals, home care services, area offices on aging, Veteran’s Administration offices, senior centers and more in your local area. I strongly encourage you to find and join a support group for caregivers. This is the best decision I’ve made as a caregiver, bar none! Not only has it given me an outlet to discuss my feelings and talk to others who can relate to what I’m going through, but it has been the greatest source of knowledge and information for all aspects of care-giving.

So, no, caregiving is not for sissies, but, taking these five steps, before your loved ones are in dire need of help will go a long way to ensure that everyone is able to navigate through the process with a sense of peace and it will ease tensions and fears of the unknown for all involved. In this case, ignorance is most surely NOT bliss, but knowledge IS power!

Of course parents aren’t the only people we care for. Often it’s a spouse, a sibling, a child. While I write about my experience, which revolves  around caring for my mom, my aunt, and, to a lesser degree, my mother-in-law, I want to be sure to acknowledge that folks in these other care-giving roles have it just as tough, maybe more-so.

If you’ve already begun navigating the care-giving maze, what is one thing you’re so thankful you did at the beginning or one thing you wish you had done that you didn’t?

We Begin Again

11147909214_ba04bda741_zDecember 1, 2012 marked the beginning of my role as full-time caregiver to my mother who suffers from Alzheimer’s Disease.

It’s been a rough two years. My four kids are all at home. They were 13, 10, 8 and 4 when my mom moved in. I was a stay at home mom and a perpetual volunteer. We have an 1100 square foot house with three bedrooms and only one very tiny bathroom on the main floor.

I liked my life.

I love my mother and want to ensure she’s well taken care of. When the time came, we
brought her to live with us. It was the right thing to do. It was also the only option.

She doesn’t have any money. Neither do we, really. So placing her in a private pay facility at roughly $7,000 per month isn’t an option.

She doesn’t qualify for a nursing home through Medicaid because there’s nothing wrong with her that requires a nurse. An around-the-clock babysitter, yes, but a nurse, no.

She doesn’t qualify for in-home care because she doesn’t have enough medical expenses to get Medicaid to kick in anything there either.

I’m an only child. I have no family nearby. I’m it.

I really want to want to take care of my mother. She was my best friend most of my life and has done so much for me. But I’ll be honest: there are a lot of days when I resent the position I’ve been forced into to no end.

The vast majority of the time, she’s not my mother. My mother has slowly faded away. I’m caring for a woman who absolutely refuses to take a shower, wouldn’t change her clothes-ever-if I didn’t force it, insults me, shows almost no gratitude or appreciation for anything I do, requires me to keep a baby gate up at my kitchen door that I must hop over every time I want to go in or out, causes my boys to sleep in the basement, prevents us from being able to do whatever we want, whenever we want as a family, and the list goes on.

You see, everything in life is better when it’s our choice to do it. I’ve said that I’d like to think that even if we were very wealthy, it wouldn’t change anything and I would choose this. The truth is, I’ll never know.

Everything I just told you about the resentment I feel makes me feel incredibly guilty. Like I said, I want to want to do this. My mother deserves that from me. I’ve been praying that God would change my heart. My head knows all this “stuff” but it can’t make my heart feel any differently. But God can!

We’ve recently had a break from the care giving. Due to a fall, my mom has spent the last 8 weeks in a skilled nursing facility receiving physical therapy. Three things happened during that time.

The entire family got a much needed break.

God showed me why what I’m doing is absolutely the best thing for my mom and that money wouldn’t change that fact. You can read details of what led me to that decision here.

I had time to reflect on things we could be doing differently which might make her happier and allow us to enjoy this time a bit more.

11992665765_0cf109088b_zI brought her home this morning. And we begin again.

January 17, 2014 marks the new beginning of my role as full-time caregiver to my mother who suffers from Alzheimer’s Disease.

My heart has changed. I’m thankful for this “do-over” of sorts, and pray for God’s guidance as we continue on the journey.

 

 

 

 

How do you really know your loved one is getting good care?

cautionNo matter often you visit your loved one when they are in a hospital or nursing home, you can’t be there 24/7. You can’t see all or hear all. So how do you really know they’re getting good care? The care they deserve? You don’t. You can’t.

My mom fell 7 weeks ago and has been in a skilled nursing center for the last 6 weeks for physical therapy so she’ll be strong enough to return to our house.

She stayed in this same facility two years ago for the same reason-physical therapy. Then, as well as now, the place is clean and nicely decorated. The staff is very welcoming when it comes to eating meals with my mom and visiting as often and whenever we’d like. I was confident that she would once again receive good care and return to us stronger than she had been before.

But, how could I really know? I couldn’t. And the big difference between the last stay and this one is my mom. Her Alzheimer’s is so much worse than it was two years ago!

My senses were on high alert from day one. All along there have been little, subtle things that concerned me. Not in a way that I felt she was being abused, but just that this facility, known for its physical therapy and as a nursing home just wasn’t equipped to handle a patient with this level of dementia.

Although long, this post is an effort to point out some things that might be subtle, and alone, probably don’t mean much. But when you start to add them up, you get a picture of a place that is not providing good care for my mom.

Check-In

Remember, she’s there because she fell. Two years ago, there was a pad on her bed and in her wheelchair. If she got up, an alarm went off alerting the staff. They got her settled in bed. No side rails, no alarm. I questioned this because I was seriously concerned that she would get up to use the restroom and fall. The answer I was given was that someone attended a seminar and found out that the alarms don’t really help because the patient gets startled by the sound and then falls.

(My answer? Use a silent alarm that alerts the staff in a pager. Also, I did a Google search of “do bed alarms reduce falls” and the most common answer was no, though not for the reason given to me. My point? She isn’t going to remember to call you if she wants to get up, so how will you know if she falls?)

Day 1

As an aide helped her to the restroom, she admonished my mom because she didn’t call her for help, saying, “Miss Carolyn! Don’t you remember you have to call me when you need to get up?!” To which I replied, “No! She doesn’t remember. She has Alzheimer’s.” The aide responded by saying, “Oh, I didn’t know that!”

She’d been there almost 24 hours and this aide did not know she was tending to an Alzheimer’s patient. 

Within the first week

One of the first things I did was schedule a beauty shop appointment for her. My mom’s of the “roller-set” crowd and desperately needed a perm so I quickly took advantage of the convenience offered by this in-house service.

When I visited later that evening, her hair wasn’t done. When I inquired, they said she didn’t cooperate. I suggested we reschedule and the beautician call me about 30 minutes before she was going to do it. I went over with my laptop, explained to my mom what was happening and sat in the salon while she got her hair done. No issue.

2 Weeks

During her care conference, we talked about the fact that she doesn’t eat much meat. From the dietician’s standpoint: “She’s only eating 25-50% of her food.” I suggested they cut her meat for her, which probably wouldn’t make much difference because she now seems to really prefer softer foods.

I acknowledged that I knew he had to provide her with certain servings and a balanced meal. I relayed that we tease her about her hollow leg at our house. She may only take one bite of meat, but she will eat four helpings of mashed potatoes, three helpings of fruit or the vegetable if she likes it. I asked if it would be possible for the dining staff to take note of what she’d eaten. If she hadn’t touched the meat, but all the stuffing and vegetables were gone, could they offer her more?

He cheerily responded, “Oh, she can always ask for more! Yeah, well, she has dementia, pal! She’s not going to think to ask for more!

The signs continued.

Her bed and clothes were soiled with urine. Often. She’s not completely incontinent. Sometimes she uses the bathroom, sometimes she uses the brief. When she’s home, if we notice her brief is wet we guide her to the bathroom and tell her to change her pants. Nothing ever soaks through. But, with no one really paying attention to it or encouraging her to change it, it just keeps getting more full.

ariel on dependsAt home, we keep her briefs sitting out on the bathroom floor. They used to be in her underwear drawer in her dresser. Then we moved them to the vanity drawer in the bathroom. Then right out in the open so she can see them. You see, she might go to the bathroom and notice that the brief is wet and full, but without seeing a fresh one sitting there, she wouldn’t know what to do about it. Guess where they keep the briefs in the facility? Inside her closet in the opposite corner of the room as the bathroom. On the top shelf (which she can’t reach when she’s sitting in a wheelchair even if she knew they were there)!

I got a call December 23rd from the social worker. My mom had been there nearly a month and it had been brought to the attention of the social worker that she was uncooperative when it comes to showers. Welcome to my world. The social worker thought maybe I could come in and help. We decided on 8:30 the next morning (Christmas Eve). I showed up at 8 ready to help. Of course the message hadn’t been passed on and the staff had already attempted to do it at 7 that morning. Let me tell you, my mom HATES taking a shower. I ended up doing the whole thing myself.

Up until then, I had been thinking that if they were able to qualify her through Medicaid to stay there permanently, I might do it. Then I thought if I’m still going to have to come in and do the very part of the care giving I hate the most, why would I pay them $7500 a month?!

I haven’t been asked to come in and help again with the shower, but I’m pretty sure she hasn’t had a full shower since. I know her hair hasn’t been washed. She doesn’t smell, so I think they’re managing sponge baths, which is ok, I guess.

On Christmas morning, my son and I went to pick her up to bring her to our house for the day. She has an ankle bracelet on because of the dementia. She’s an “elopement risk.” I was told they don’t take it off, but to let the receptionist know we were going out and she’d turn of the alarm while we exited the building.

No receptionist. Waited a few minutes. No receptionist. Well, it’s Christmas, and I don’t have all day. Out the door we went. Alarm ringing loudly. We loaded her in the car and my son stayed with her while I took the wheel chair back to her room. I walked back in and was well past the lobby before a member of the kitchen staff finally peeked around the corner to see what the alarm was for. A good three to four minutes had passed before anyone even noticed.

All of these things are noteworthy in and of themselves, but when you put them all together, a picture of poor care begins to emerge.

One of the best things about my mom’s stay has been her room mate. A wonderful woman who is simply there for physical therapy. Her mind is sharp as a tack! I’ve learned much more about my mom’s progress, mood and behavior from her than all the staff members combined.

Last night, she told me that she has reported three of the aides for their treatment of my mother. Two of them were fired. The incident that resulted in the termination had to do with my mom’s shower. Now, my mom swears and hits and yells about a shower. She HATES them! Especially when they come in at 7 am while she’s sleeping, turn on the lights, wake her up and say, “TIme for your shower!” I’d cuss, too! Apparently, they weren’t too kind in return one day. I don’t believe they were physically abusive, but whatever they did exactly was enough for them to be fired. (Mind you, I haven’t been informed of any of this by the facility.)

What disturbs me most is this: One morning about 5:30 am mom’s room mate called the aides because she needed assistance herself. Two responded. When they finished with her, one said to the other, “Hey, watch this.” She then went over, turned on my mom’s light and said, “Wake up! Time for your shower!” Just to get her riled up. This infuriates me.

I called this morning and told them I will be bringing my mom home on Friday. (I can’t do it sooner because of paperwork and the need to make some arrangements for her here at home.)

The good and bad of this is that my mom doesn’t remember the ill-treatment. She raves about how good they are too her. But, because she doesn’t remember any of it, she can’t report it. I’ll never trust anyone I don’t know well to care for her. Not ever. Even if she were in a facility that specializes in dementia care, this type of disrespectful treatment could still go on. And there, her room mate wouldn’t be able to tell me what’s happening any more than she can.

If you made it through this whole post, thank’s for hanging in there. I shared this story to demonstrate that mistreatment of your loved one doesn’t necessarily manifest itself in bruises, bed sores and a dirty, dingy environment.

I encourage family members to look for the little things, the subtle things along the way to know if your loved one is being treated with respect and dignity in addition to having their physical needs met. Be vigilant. Talk to room mates, families of room mates. The staff. Let them know you’re watching! And don’t be afraid to speak up and take action when it’s not going as you think it should.

UTI: Know the symptoms!

If you have an elderly person in your life, it is imperative that you know the symptoms of a UTI (and don’t ignore them).

My first experience with a UTI in the elderly was several years ago. I went to my mom’s house and found her in bed in the middle of the day. Unusual behavior. Her speech was slurred. Unusual behavior. And she wasn’t making any sense. Unusual behavior. I thought she had had a stroke. I called 911. The paramedics thought the confusion was dementia. I knew differently.

UTI.

The next encounter was about 18 months ago. My mom, now diagnosed with Alzheimer’s but still living independently, fell four times in three days. Unusual behavior. The fourth time she fell was in the middle of the night. As my husband drove over to pick her up off the floor, I Googled “sudden frequent falls + Alzheimer’s.”

UTI.

She ended up in the ER the next day after seeing the doctor. She was sent home to our house with an aggressive antibiotic. Four days later, she literally slept all day. Unusual behavior. When I checked on her before I went to bed, her voice was childlike, speech was slurred and she wasn’t making much sense. Unusual behavior. I suspected the UTI had gone south and called 911.

She was septic. She spent 5 days in the hospital followed by 30 days of in-patient rehab to build up her strength.

Last year, my friend’s mother-in-law came for a visit. I had never met her, but my friend was talking about how much worse she was than they realized. She suffered from Parkinson’s related dementia, I believe,  but she  was hallucinating and was very confused. Unusual behavior. I asked my friend if it was possible she had a UTI. Upon her return home, it was confirmed. She ended up in a coma. Thankfully, she recovered.

And, last night. My sister-in-law sent me a text that my mother-in-law had been sitting on the bathroom floor for two hours. Unusual behavior. I called and talked to my MIL for less than 60 seconds. Her voice was lethargic and sad. Unusual behavior. Moments after I hung up the phone, my husband walked in the door from a business trip. I told him to kiss his kids and go to his mom’s house. Something wasn’t right. Maybe it’s a UTI.

She was admitted to the hospital for UTI and dehydration-which often accompanies a UTI.

I’m not a doctor or a nurse. I’m simply a caregiver with experience and the internet. If you Google “sypmtoms of UTI in elderly” you will find over 860,000 results. I urge you to read some of them. You will find things like:

“The best indication of a UTI in the elderly is a sudden change in behavior.

“And for people suffering from Parkinson’s disease, Alzheimer’s disease, or other dementia, “any kind of stress, physical or emotional, will often make dementia temporarily worse,” Forciea says”

“elders often don’t exhibit any of the common symptoms – or don’t express them to their caregivers”

When caught early, UTIs are highly treatable. Whether you are a caregiver or not, familiarize yourself with the myriad of ways a UTI can wreak havoc on your loved one.

“Knowing that a urinary tract infection in the elderly can be symptom-free is the first step in avoiding serious complications from untreated UTIs. Any time a change in behavior is noted in an elderly patient, a urinalysis should be performed to rule out a urinary tract infection.”

Moving Mom

moving-dayFourteen short months ago my mom was still living alone. She lived just 5 minutes from us and we would go there daily. She had three neighbors who also looked in on her. We knew the time was coming when she would have to move in with us and we had a vague idea of what we would do.

Back in October 2011, she began falling. By the grace of God, she never got hurt, but when she called us at 2 am because she’d gotten up to use the bathroom and fell, I had to figure out what was going on. My husband, who I affectionately refer to as St. Michael, went over to get her up and I googled “sudden, frequent falls + Alzheimer’s.”

Urinary Tract Infection.

She had a check-up scheduled a few days later, but I don’t mess around with UTIs so we went to see the doctor the next morning. She was extremely weak and unable to give a sample. While we were waiting for the doctor to come back in with prescriptions, she began to complain of chest pains. Doc wasn’t going to fool around with that and called an ambulance.

ER ran every test known to man checking her neck, chest, lungs–all good. But, she did have a UTI. Sent her home to our house with an antibiotic. We told her she’d be with us a couple weeks until the infection cleared up and we could determine if she was still falling. Four days later the UTI went south. She slept literally all day. When I went to check on her at 11 pm before going to bed myself, her speech was slurred and she wasn’t making much sense.

Back to the ER.

That was a nightmare. They were very busy. The decision to admit her came pretty quickly but the hospital was apparently full. She was sleeping comfortably, I, of course, was not. The patient in the next “room” was a psych or criminal patient with a guard outside the door. After we’d been there a few hours, another such patient was brought in so they moved my mom, allowing the guard to do double duty. The only place they could move her to was a trauma room. Clear at the end of the hall, out of sight and out of mind.

At 5 am, the nurse came in and said they paperwork was all done, but there was still no room. I was nearly in tears from exhaustion. She assured me I could go home. My mom did, too. Had my mom been in the other room, that would have been easier. But in this room, she was going to need to use the call button if she needed someone. She wouldn’t remember where it was. She wouldn’t remember where she was. She would be scared.

Still, the realization hit me that people don’t get released from the hospital at 5 am. If there was no bed now, there wouldn’t be one for hours. My physical limitations won out. I wrote a note for my mom and laid it on her belly and pulled the call button up on top of her so she could see it. I gave her a kiss and went home. I sobbed the whole way. I don’t know how I didn’t have an accident.

My husband went up to the hospital as soon as the kids were off to school, arriving about 3 hours after I left. They were just moving her to the “admission waiting rooms.” He called me around 11 and said they’d be getting her into a room about noon. I went back to the hospital and he left. She didn’t get into a room until 3:00 that afternoon.

She spent five days there and was then transferred to a rehab facility for physical therapy to build up her strength. She stayed there 30 days.

Late on a Monday afternoon I got the call that she was going to be released on Wednesday to our house, permanently. By this point, we knew she’d be coming to live with us so our plans were a little more defined than they had been six weeks earlier, but we were under the impression she was going to be at the rehab faci at least a couple more weeks.

We had to scramble.

I called St. Michael who left work and came home so we could begin moving her furniture to our house and getting her room set up. We worked all afternoon Monday and all day Tuesday. Of course it poured down rain the whole time. We finished about 7 pm on Tuesday. Leaving only a few things that I didn’t want to get wet until the next day.

Fortunately, everything of great value had already been moved to our house. Still, many items with sentimental value were taken.

Fortunately, everything of great value had already been moved to our house. Still, many items with sentimental value were taken.

My husband went to work Wednesday. He was to fly out that afternoon for a business trip. I got to my mom’s around noon for the last load and found her house had been broken into overnight.

Because I didn’t have enough to deal with already!

Police called. Business trip cancelled. Tears shed.

Hubby came home and we moved my mom in with us that evening.

When I picked her up that mid-October morning to take her to the doctor, neither one of us had any idea she’d never see her home of 41 years again.

So many of our parents will have to eventually leave their homes and it’s not likely to happen when it’s convenient or according to a prearranged schedule. If your loved one is showing signs that he or she is not going to be able to live independently anymore, I urge you to create a plan! Have the tough conversations with all family members involved and start researching options.

Many times the conversations that need to take place don’t because siblings disagree on what’s needed or they don’t live close together. Sometimes it’s just a matter of getting around to it.

It’s going to be difficult when the time comes. Having a plan–even if it’s not time to act on it, is in the best interest of everyone.

Especially the loved one involved.

Talk to me! Are you facing the inevitability of your loved one needing round-the-clock care? Have you already had to move your loved one out of his or her home? What successes or failures did you encounter?

Too Chaotic for My Chaotic Bliss

I last blogged about 6 1/2 months ago. I was elated when I wrote that post . Michael had just been hired after a long layoff. Just six weeks later, he was laid off again as the start-up company quickly realized they’d hired more people than they could afford at such an early point. He wasn’t the only casualty, but that was little consolation.

What ensued was 3-4 months of chaos–and nothing about it was blissful. I’m not going to go into a lot of details, but suffice it to say we were sinking fast. And I guess, maybe it wasn’t fast. Afterall, the initial layoff began on August 20, 2008, so it had been nearly 2 years. Hope was hard to come by. Faith was being tested. Life pretty much stunk.

During all of this financial stress, I had another major stressor in my life. My mother and her continuing decline into dementia.

I have truly never known such stress, such despair, such an overwhelming feeling of, well, being overwhelmed. (Let’s not forget I’m the mother of 4 young children).

My prayers shifted their focus. Instead of  just praying for blessings on our family, my prayers became desperate. Something had to give. I believe the Lord won’t allow you to go through more than you can handle–

1 Corinthians 10:13: No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

but, I was truly reaching the end of my rope. Something had to give. You know, I’m very familiar with the first part of the Bible verse above. But I found myself forgetting, maybe doubting the last part–”He will also provide a way out so that you can stand up under it.”

Then came August. Our darkest month financially.

My friend Elizabeth told me about a support group for caregivers of dementia patients. Oh, my gosh! Talk about a gift from God! Our group met weekly for  the first month, and now we meet monthly. I have learned so much and am so much better equipped to handle my mother’s care now than I was before.

Out of the blue, the ladies from my church took up a collection and provided us with a gift card to help with back to school shopping.

By the end of August, Michael’s freelance work was really picking up again.

September was a good month, too. But by mid-month, it got really good!

He landed a terrific job! Two days before he was contacted about the job he said, “When it’s right, it will be easy.” Well, I guess so! This opportunity came looking for him. It’s quite literally his dream job. You can read his take on his blog at Mike’s Points.com.

The Sunday after he was offered the job, I sat in Bible study at church and listened as the teacher read the following passage to us from James 1:

 2Consider it pure joy, my brothers, whenever you face trials of many kinds, 3because you know that the testing of your faith develops perseverance. 4Perseverance must finish its work so that you may be mature and complete, not lacking anything.

and,

12Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.

I doubt it was coincidence that those passages were the focus of our discussion that day.

Michael started his job on October 4. We’re adjusting to another new normal. It’s a good adjustment to make.

Life’s less chaotic and more blissful now.

Thank you,  God!