Tag Archives: Alzheimer’s

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.

Incontinence Meds: Could they make the situation worse?

If you’ve been following our story, you know that I’ve written about my mom’s incontinence and how really bad it’s been caring for her lately. Things continued to be terrible as it related to keeping her in clean briefs and clothes.

Until recently. Recently, it’s gotten better and the whole thing has me wondering. The following is our experience. I am NOT a doctor and I’m not making any recommendations. What I am doing is posting some food for thought that may prompt discussions with your loved one’s doctor if you are battling incontinence (and I say you because it’s more than just your loved one who’s dealing with it).

ID-100240967We ran out of my mom’s incontinence meds a couple weeks ago and I’ve been too busy to refill them. (Cut me some slack. They aren’t life-saving pills.) Here’s what’s changed over that time–

She is having fewer leaks through her Depends. We were sometimes going through 4 pair of slacks a day and changing her sheets every other day. She is almost never leaking through now.

She has not had a bowel blow-out since she hasn’t been taking the meds. She still soils her brief once in awhile but that is very manageable compared to the weekly explosions we were experiencing.

More often than not, when she’s on the toilet, she pees. Before, I think she would go to the bathroom after she had just gone because nothing was going on once she got there.

She hasn’t argued, fought me, called me a name, cussed or spit at me in the bathroom for several days. Before, she would at the very least call me a bitch two or three times during the changing process.

I don’t have an explanation for any of this other than she isn’t taking the meds. You may recall when I took her to the neurologist in April, I asked for a higher dose of the incontinence meds hoping to get some relief from the awful situation.

I’m not a doctor, but here’s what I know about Oxybutinin: it doesn’t change how much you go, only how often. The point was to spread out the episodes to help me manage it better. Say every 4 hours instead of every 2. I wonder…by going less often, but going more, was it too much at once for the Depends to handle and so she would leak more often?

It can cause constipation. She always has very soft stool. But I wonder…was it bunging her up to the point that she would just explode with no warning?

It crosses the blood-brain barrier and can counteract Namenda (an Alz drug). The last several days she has been more engaged with the family. She sits in the living room with us more often and smiles more often. She’s also less argumentative…in fact, I would say she has not been argumentative at all for days. I wonder…has the Oxybutinin been contributing to her foul mood and withdrawn personality? (Note: She’s no longer on Namenda)

I don’t know if any of this is an actual cause and effect relationship.

But I do know I’ve been praying for relief and even about the idea of working full time so we could afford to put her in a facility. So whether or not the drug has anything to do with it, I do consider it an answered prayer. God is good!

If you’ve had a similar experience with incontinence medications (or the lack of them), I would love to hear from you! Please leave a comment.

 

Photo Credit: FreeDigitalPhotos.Net by Stuart Miles

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

The Cadillac of Alzheimer’s Patients

The last few weeks have been rough. I.mean.rough!

If you’re an Alzheimer’s caregiver, you know that things will go along pretty steady for awhile, and then suddenly, it’s as though your loved one falls off a cliff and is markedly worse and you find yourself having to navigate another new normal. That’s where we are right now.

Showering has always been an ordeal and a struggle. From start to finish it’s usually at least an hour-long if not afternoon-long undertaking that includes hitting, yelling, cussing and stand-offs. (To be clear–and honest–while my  mom is the primary owner of all of those behaviors, I have been known to participate in all but the hitting.) Since it’s always been an ordeal, we are used to it. We don’t like it, but we deal with it.

Add to that worsening incontinence and more hitting, yelling, cussing and stand-offs when it comes to needing to change the pants. And, don’t forget the additional mounds of laundry and multiple-times-a-day bathroom cleanings that go along with that.

It’s been rough.

That’s why I’d been looking so forward to my mom’s semi-annual trip to the neurologist. She’s much worse than she was on her last visit. She’s lost a great deal of language and is much more weak physically in addition to the aforementioned issues.

I had two goals: The first was a “happy pill” to make her more compliant. I don’t want to turn her into a zombie. She sleeps (or at least lays in her bed) around 20 hours a day as it is. But, I do need her to be less argumentative about these matters of hygiene. Not only for her sake, but for that of the entire family.

The second was an increased dose of her incontinence medicine for obvious reasons.

I knew the doctor was likely to be resistant to both of those requests as both carry side effects that range from constipation to making the dementia worse/progress faster or even death depending on the drug. While decisions like this aren’t easy, it all comes down to quality of life vs. quantity at some point.

Appointment day finally arrived! I was going to make my case and get the help I needed to improve the quality of her life as well as that of the family!

It was going to be a heck of a day. My mom would have to shower, brush her teeth AND get dressed before we left for the appointment. I was gearing up for a big battle.

She didn’t really fight me. She got a little belligerent when I washed her hair, but that was it. As I helped her dress, she pulled her turtleneck sweater over her head and as her face peeked through she looked at me, we smiled at each other and said, “Peek a boo!” at the same time. We both laughed hard at that. As we drove the 45 miles or so to the U of M Turner Geriatric Clinic for her appointment, she was quite observant, reading signs and commenting on the scenery.

I thought to myself, “She’s having a good day.”

When we entered the doctor’s office, I began to paint a picture of just what life is like dealing with the incontinence and the combativeness. I told the doctor that I would describe my mom as nearly completely incontinent of bladder. It was just about that time that my mom spoke up and said, “I need to go to the bathroom.” Humph.

Upon returning from the bathroom, the doctor began to give her the mini-mental.

Question 1: What’s your birthday? She always knows that and she got it.

Question 2: What year is it? She had no idea–she never does. The doctor said, “It’s two-thousand something. Can you guess what it might be?” My mom replied, “2014.”

Before the next question, my mom asked the doctor, “Is your name Dr. Heidebrink?” At which point I burst out laughing! How in the heck did she know that? She hasn’t seen her for 9 months! It’s not as though her name is “Dr. Smith” afterall!

Question 3: What month is it? May. It’s ALWAYS May because her birthday is in May. Doesn’t matter who asks or when, it’s May. Not yesterday. Yesterday it was March!!

Question 4: What season is it? Let’s see…she was wearing winter clothes, a winter coat and there was snow on the ground when she went outside. Yup! SPRING! Not even 24 hours into spring but it was spring! In the four years she’s been getting the mini-mental I don’t think she’s ever gotten that one right before.

UNBELIEVABLE!

cadillacShe actually ended up scoring two points higher on the test this time than she did 9 months ago. It was like taking your car to the mechanic and all the dings and rattles suddenly stop!

Sometimes, it’s easy to forget that from the doctor’s perspective, it’s actually my mom that’s the patient and not me or the rest of the members of our household. Getting the meds I was asking for was not looking good at this point.

Then I just really put it out there about how her behavior is impacting the family and the care-giving situation and that all of this stress can’t be good for her either. The end result was a low-dose anti-anxiety pill and an increased dosage of incontinence meds. I’m very hopeful that the anti-anxiety med will do the trick. Honestly, the only time she is combative is when it comes to hygiene and everything about hygiene takes place in the bathroom–a room it is obvious makes her very nervous. I can’t know which came first–the anxiety over the bathroom which makes her resist the hygiene tasks, or the resistance of the hygiene tasks which causes the fear of the bathroom. Either way, this drug could be the answer.

As we left the doctor, I asked my mom what her favorite car is and she said a Cadillac. I told her I was going to start calling her “Cadillac” because she acted just like a car at the mechanic!

Although the timing of her having a good day wasn’t great in terms of the doctor getting a true picture of how she is doing, I sure wish there were more days like yesterday!

 

photo credit: “the most beautiful car in the world” by contemplative imaging

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!

 

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.

 

 

 

 

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?

Take care of you.

keep-calm-and-take-care-of-you-13One of my favorite movies of all time is Pretty Woman. Julia Roberts and Laura San Giacomo play friends and roommates who are prostitutes–dangerous work. Whenever they say goodbye to one another, they say the same thing.

“Take care of you.”

I’m not a prostitute.

I’m a wife.

I’m the mother of four young children.

I’m the caregiver of my mother who has Alzheimer’s.

I’m stressed out.

I’m overweight.

I’m tired.

I hear the words over and over in my head. “Take care of you.” “Take care of you.” “Take care of you.”

I hear it at my support group. I read it on some of my favorite blogs and magazines. I see it on TV.

Easier said than done! But I’m learning.

I’ve joined a support group. This is THE single best decision I’ve made along the way. It is a source of information, resources and emotional support. I’ve never missed a meeting!

I’m learning to say, “No.” That’s a tough one for me. I’ve been a people pleaser my whole life. I like to help people. I also like to feel needed. So, when someone asks me to do something, my knee-jerk reaction is to say, “Sure, I’d love to!” In the last year, I’ve scaled back my volunteering. I now focus my efforts on only those things that really bring me true enjoyment. If the activity causes me stress, I don’t do it.

I also cancelled a family reunion I was to host this summer. That was hard for me to do. I love my family and don’t get to see them often. If I put it off, will my mom still be here? Will she still know them? I’ve wanted to cancel it for awhile. But, I kept telling myself not to make the decsion on a day when I was stressed out…but to make it on a day when I’m not. Then it hit me: I’m almost always stressed out!

I’m asking for help. Another tough one. I think  I’m generally thought of as self-reliant and strong. It’s difficult to admit that I can’t do it all.

I write about my feelings. This blog is a great source of therapy for me. If I am able to help anyone along the way, so much the better. I don’t publish everything I write. Some of it is too emotional. Maybe one day I’ll share those writings, but not yet.

What I don’t do is eat right or exercise. The eating thing is really tough. I’m an emotional eater. If I don’t get this under control, I’ll weigh 600 pounds before this caregiving journey is over. Exercise is tough, too. It’s hard to find time for it. But I must! I’m not getting any younger and it’s not going to get any easier!

What do you do to maintain your sanity as a caregiver…whether you’re caring for your kids or an aging loved one–or both, like I am? I’d love to hear from you!

Take care of you!

A is for Alzheimer’s

When my mother began forgetting things, we chalked it up to simple old age. She put a calendar on her fridge to keep track of appointments and a notebook and pencil by the phone to write down important notes. No big deal. I mean, who among us doesn’t forget things, right?

As it got worse, I couldn’t remain in denial. We went to her doctor and he diagnosed her with dementia and prescribed Aricept. I asked him then if she should see a specialist. His response, “No. There are only two drugs that are prescribed and she’s on the more effective of the two. There’s really nothing else they can do.”

What a bunch of baloney!

My instincts told me better, but I was in uncharted and overwhelming territory. I really had no idea what to do or who to see. So, I did nothing. The Aricept did help her memory, but not enough for her to be driving (though at that point she still was).

About 10 months later, my friend saw a notice in the paper about a support group that was starting at a local eldercare facility. The group was aimed at caregivers of those with dementia. It was a four week session. I missed the first week, but went to the other three sessions.

It was the best thing I ever did! I learned so much! Right away, I learned about “geriatric evaluations.” I had never heard of this before, but some of the others’ loved ones had done this and the facilitator of the group highly suggested it. I left the first meeting with something actionable to do!

In less than a month, we were on our way to the University of Michigan to meet with Dr. Judith Heidebrink, a neurologist at the East Ann Arbor Health and Geriatrics Center. Dr. Heidebrink asked a lot of questions and examined my mother. She ordered blood work, an MRI and extensive cognitive testing.

She also dropped the A-Bomb. She suspected my mother had Alzheimer’s. OUCH! Somehow, dementia didn’t sound so scary. But Alzheimer’s. That’s. Not. Good.

The tests took place over the course of the next several weeks and less than two months after we started, we were going back to get the results.

Although there is no way to diagnose Alzheimer’s exactly, other things can be ruled out and certain things in the brain strongly indicate whether or not a patient has the disease. All roads pointed to Alzheimer’s.

The doctor went over all  of the results with us and sent us home with the results and recommendations that came from the cognitive testing–five pages of information all about how well, or poorly, my mom was functioning in different areas.

In some areas, she tested better than average or pretty close to normal limits. When it came to memory, she tested in the 1st percentile. That means if you lined up 100 people her age her memory would be worse than 99 of them! But, she could still cook and shower and dress herself. In some ways, she was still functioning very well.

The doctor  and a social worker both counseled us that now  the important thing was keeping her safe. She shouldn’t be driving. Check. That battle had already been fought. Someone should be managing her finances. Check. She needed medication reminders. Check. I’d been taking her medication to her every day for several months since I realized she wasn’t taking it at all.

We left that day with some other A words. Yes, she had Alzheimer’s. But we had some Answers and we had and Action plan.