Category Archives: caregivers

Holiday Self-Caring Gift Ideas for Caregivers

This guest post was graciously provided by Beverly Nelson. Visit her website at

standupforcaregivers.org

 

 image by Pixabay

 

If someone you know or love has a hard time living their day-to-day life on their own, chances are someone else close to them has taken it upon themselves to be their caregiver or caretaker. Caregiving is a time-consuming endeavor where you have to be available at any time, day or night. The emotional stress of caregiving can also be difficult. Watching someone you love struggle with daily activities and declining health can take its toll.

This holiday season, treat a caregiver with a thoughtful gift that encourages them to take time for self-care. Self-care is any act done deliberately to help one’s health mentally, physically, and emotionally. These acts refuel us, and they are generally something that we enjoy. It can be as simple as drawing a hot bath or watching a favorite movie. However, self-care can also be the things we don’t necessarily enjoy, like taking time off to go to the dentist. Self-care is about preserving yourself and making your health a priority in a society where we are often pulled in so many different directions.

When it comes to self-care gift giving, it is best to focus on the “enjoyment” activities. While much of what we do for self-care involves things, the gift shouldn’t be about the item itself. It should be about the experience the item facilitates.

Here are some of our favorite ideas for self-caring gifts for the caretakers in your life:

A Blank Journal

The gift of a blank journal is the gift of self-expression. Taking the time out every day to write a little something is very cathartic, especially for someone going through a lot like a caregiver is. Journaling doesn’t have to be writing long-winded entries detailing every hour of every day. Micro-journaling is a new way to take up the hobby without having to put too much pressure on oneself to pump out perfect prose every evening.

Micro-journaling requires the journaler to do four simple things:

1. Write the date.
2. Make a list of 10 things about your day.
3. Identify one thing you are grateful for.
4. Go back to living your life!

It’s simple, elegant, and allows a person to express themselves and release their thoughts and feelings in a healthy way.

Dark Chocolate

Food is a great gift. Everyone has to eat, but not everything we eat is going to be special. Dark chocolate is the perfect gift for everyone, even someone who “has everything,” and can buy themselves whatever they want, whenever they want. But of all the foods, why do we suggest dark chocolate as a self-caring gift?

Dark chocolate tastes decadent, so when we enjoy it, we are giving ourselves a treat and a break from the realities of the day. However, dark chocolate has a lot of health benefits, as well. It is full of minerals and antioxidants, and eating chocolate releases serotonin and endorphins into the brain, also known as the “feel good” chemicals in our body.

Adult Coloring Book and Crayons

Coloring helps promote mindfulness and reduces anxiety, so it has become very popular among stressed out grown-ups. The adult coloring book craze taps into our love of being creative as well as zoning out. Buzzfeed has a wonderful list of great coloring books for adults, but you can also find some that specifically cater to your caregiver’s interests.

Summing Up

If you are looking to buy a gift for a person who has taken on the role of caregiving for a senior or ailing family member, treat them to a gift that helps them be active in their own self-care. A blank journal gives them space to express themselves verbally and chronicle the things they are grateful for. Dark chocolate is the gift for those who seemingly have everything. It’s delicious and secretly good for the body, as well. Finally, adult coloring books are perfect for those who want an activity that promotes mindfulness and reduces anxiety.  You can feel good giving any of these gifts to someone who works so hard–a nice little feel-good bonus for you, as well.

Dementia and the E.R.

I had a span of four days two months ago when I went to the E.R. three times—twice for my mother and once for my husband. Going to the E.R. is never fun. Even if you have all your faculties it can bring out negative reactions and behaviors. Being in pain may cause one to really despise the wise-cracking nurse who otherwise would be fun to be around. The unpleasantness of being in that cold and stark environment, being left waiting for hours, and wondering what the heck is wrong with you just doesn’t make for a pleasant time.

When one is in the E.R. and has dementia, it is a bit different for both the patient and for the caregiver.

E.R. Staff Will Drive You Mad

Intake staff will persist in directing their questions to the patient. As the person accompanying a loved one with dementia, it gets really old having every single person ask “When is your birthday?” “Where were you born?” “What is your height?” Mom just looked at me mystified and concerned. I had to keep explaining that she doesn’t know that stuff on any day. It in no way reflected effects of the “seizure” which sent us to the E.R.

You might think, why didn’t you explain about the dementia. I did, but it didn’t change anything. I even came armed with a list of her diagnoses and of all her medications. The intake people took it, and it was never seen again. It did not travel with her to her cubicle in the E.R. or upstairs when she was eventually admitted to the hospital. None of the information was put in her chart or on the computer. I was left doing the best I could from memory. So annoying when you feel you really came prepared and organized. My advice is carry 3-4 copies, not just one.

The E.R. Is Not Dementia-Friendly

Once we navigated the intake questions and were finally seen by a doctor, the tests began. The lab work went okay, but the x-ray experience was special as in not-in-a-good-way special. Mom needed an x-ray of her heart. According to the technician, the doctors don’t want the patient to lie down while the x-ray is taken. The technician and I did our best to make this easy for Mom. However, since she is little, her wheelchair was too small to accommodate placing the plate behind her. The technician decided Mom would simply get out of her wheelchair and sit on a stool in spite of my expressed opinion that this was going to be difficult. Yep. Even once we managed the transfer, Mom kept listing to port, in danger of falling off. Mom gets really scared if she thinks she is going to fall. Sitting on something with no back and no sides was very scary for her. I was saddled with one of those heavy protective aprons as I tried hard to hold her up straight enough to get a good picture. We really needed a third person to help us with her. It was ridiculous. It took forever. Tell the damn doctors we can’t safely do it.

The IV was a disaster. Mom had been moving her hands almost constantly during her waking moments for several months as part of her agitation. Was she going to leave this thing alone that she could feel in her arm? No. I first discovered she had knocked it out when the monitor quit showing her pulse. As I was trying to put the little device back on her finger, I lifted her blanket, and noticed her gown was bloody. I called the nurse who ignored my efforts to tell her Mom couldn’t help it and lectured Mom on not touching the IV area. Oh, and also please leave your arm extended so that the blood pressure cuff works properly, thank you very much. The nurse decided that maybe the IV needed to be better wrapped to protect it and Mom. You think? Mom pulled it out a second time. No blood this time, just the IV spilling out and soaking her. Another change of gown. This time a different nurse came and had the sense to put it in her hand which at least made it easier for me to see what Mom was doing. I just held her hands. We eventually gave up on the pulse device altogether. It was no sooner put back on Mom’s finger than she had it off again.

Tiny Dancer

When the doctors finally decided to admit Mom during our second trip to the E.R., there was more fun. Again the repeated useless questions, the repeated physical tests for stroke. At one point, after we had been there about six hours already, the admissions doctor came to see Mom and put her through her paces again. When he asked her to raise her arms, she started waving her arms around with delicate hand gestures and a childish look on her face. I looked down at her and said sternly, “This is not ballet class.” I know, it was mean, but I’d been up all night the night before with my husband. I was ready to drop, and those metal chairs are not comfortable. I actually climbed up on the foot of her bed at one point to lie down for a while.

Escaping the E.R.

I didn’t need a doctor or an x-ray or an MRI to tell me. I knew Mom had suffered a stroke. So many of the signs were there—the typical one side weaker than the other, the change in her vocabulary (The stethoscope was “icky,” “felt all messy” rather than cold.), decreased comprehension, the above-mentioned childish behavior, and the clincher–the fact that she never complained during the entire seven and a half hours we were there, never asked when we were going home, never muttered under her breath. That was definitely atypical. Mom just stared up at the ceiling. She was delighted to get into the hospital inpatient room with warm blankets. I had to answer all the same questions all over again, but got out of there by 11:40 and was home shortly after midnight.

And that was the beginning of the seven-day hospital stay. More about that experience and how to advocate for someone who cannot speak for themselves later.

For other posts that also deal with loved ones in the hospital, click here for Irrational Desires and Hospital Nightmares; click here for Dealing with Delusions and Memory Loss; click here for Inconsistent Memory vs. Nightly Rituals; and click here for Meeting Financial Challenges

Care Home Humor: Unperturbed Grace

“Grace” is one of my favorite residents at Mom’s care home.  Her dementia is advanced.  She doesn’t say a lot, but generally conveys that “It’s good.”  She likes the home.  She actually thinks it is hers.  Grace gets cross sometimes.  And scared sometimes.  And many times, she just makes us laugh.  Her humor is special.  It is unintentional and arises out of just who she is.  We love her.

Grace sleeps quite a bit in her recliner during the day. Frequently when she wakes, it is with a start and an exclamation of some kind as she reorients to where she is. Sometimes, it is clear she has been dreaming and is a bit frightened.

A few days ago, we had a small scare. Dave likes to remain at the dining table after lunch for a while and listen and sing along to the music. Sometimes he nods off a bit but will eventually get up and go down the hall to his room for a nap. This particular day he must have been positioning himself to get up by turning sideways in the chair and then nodded off before making the effort of rising. The next thing we knew, he had fallen backwards onto the floor.

Staff checked him out, got him up in his chair, and bandaged a scrape. Dave was sent to his room.  Apparently, you are never too old to be sent to your room.

A while later, Grace startled out of her sleep with a “What happened?”

“Well, we’ve just been listening to the music, Grace. And Dave fell out of his chair.” I responded.

“Okay,” said Grace.

I imagine I could have said that the place caught on fire, and we had all evacuated the premises while leaving her behind, and she would have responded the same.  She is “okay.”  Except when she gets cold, and then she is quite cross.  However, if you want someone who can roll with the punches of life, that’s Grace.

For the other “Grace” posts, click here to read “Care Home Humor: Grace,” and click here to read “Grace and the Cat.”

 

 

Care Home Humor: Grace and the Cat

The resident cat at Mom’s care home is a beautiful bi-color mask and saddle feline that Anne rescued. The residents love Kitty. To say that Kitty is a tad overweight is being kind. She lives to eat. Kitty’s weight tends to be the subject of much of the humor from the residents and staff.

If the staff is in the kitchen, Kitty is right there meowing and pressing against their legs until they can hardly move without tripping over her. She wants a treat, preferably her tuna. If the refrigerator or a cabinet is open, Kitty has her head right in there examining the contents for likely goodies.

One late afternoon, “Grace” was already placed at the dining table in her wheelchair after a trip to the bathroom. It was close enough to dinner time that there was no point in transferring her to her recliner only to have to transfer her back into her wheelchair for dinner. The rest of the residents would be brought over soon.

Anne was finishing preparing dinner with Kitty close on her heels with her every movement. The meowing was piteous. Kitty clearly thought she was starving.

Anne has been trying hard not to feed Kitty so much and eventually raised her voice sternly. “You already ate! I’m not feeding you any more!”

“Okay,” said Grace.

Anne didn’t hear Grace from the kitchen, so I piped up. “Anne, Grace thinks you were talking to her.”

“Oh, my God!”  Anne flew out of the kitchen to Grace at the table. “Oh, Grace. I wasn’t talking to you. I was talking to Kitty. I’ll feed you. Of course I’ll feed you dinner.”

“Okay,” said Grace.  Grace sort of goes with the flow.

I believe that Kitty got her own back that day, making Anne the brunt of the humor.  But really, it is Grace that makes it all work.

For other “Grace” posts, click here to read “Care Home Humor: Grace,” and click here to read “Unperturbed Grace.”

Care Home Humor: Grace

“Grace” is one of the residents in Mom’s care home. She is very serious, having lost any intentional sense of humor. However, without meaning to, Grace provides laughs for the staff, for some of the other residents, and definitely for me.

Grace is a tiny lady. Her dementia is far enough along that it is quite difficult to understand what she is saying as most sentences seem to be random strings of words. However, sometimes you can glean the overall intended message or at least respond in a way that acknowledges her emotions.

One afternoon when I arrived, Anne was doing Grace’s nails—cleaning them, filing them, and then applying nail polish in Grace’s favorite rose pink color. This procedure took place at the dining table as I was visiting with Mom and listening to the music, often singing along.

After a while, Anne rose from the table and told Grace to keep her hands on the table top to allow the polish to dry, which Grace dutifully did.

Anne decided to take a photo of Grace for Grace’s son and encouraged her to smile.

“Oh, that’s a great photo!” Anne beamed and showed the photo to Grace. Then she came over to show it to me. Grace had a huge genuine smile.  It was a wonderful photo, and I said so.

“I never get such a big smile out of her. Her son will be so happy to see this.”

Anne went back to the dining area. “We got a great photo this time, Grace. Hallelujah!”

Vina, the other staff that day, leapt into the spirit of the conversation with “Thank you, Jesus!”

Grace said, “You’re welcome.”

For other “Grace” posts, click here to read “Grace and the Cat,” and click here to read “Unperturbed Grace.”

Choosing a Care Home



Finding that right care home in which your loved one will live, possibly for the rest of his or her life, is rather daunting. You choose the location parameters. You have a budget to help you narrow things down. Then, what?

I visited several facilities when I was looking for a care home for my mother. I am happy to say that only one was truly depressing and elicited a resounding “No, I would never place my mother there.” That place was a large facility. As the designated staff person took me on a tour, I was dismayed to see residents lying face down on sofas in the hallway or holding their heads in their hands out in the grounds alone. It had the feel of a State mental hospital or the homeless section of any big city. It was depressing. No amount of interesting animals on the grounds or daily exercise or activity time could make up for the atmosphere.

Everywhere else I visited was a home in the true sense of the word. These care homes were houses in residential areas that appeared no different from their single family neighbors. Generally they were intended for six residents, sometimes eight. Some had nicer furnishings than others. Some had more interesting menus. In some, all the residents were in their bedrooms watching tv. In others, residents were socializing in the living room or tv room. Some had nice yards; others not so much. Staff varied, as well.

I gradually developed certain criteria that helped me decide which care home to choose:

1. Ease of Communication

I knew it was important that my mother be able to understand the staff. Language difficulties make life even more difficult for people with dementia. They have enough trouble understanding what someone wants them to do. If they have to guess what someone is saying, it’s not going to go well.

2. Amiable Staff

I also believed that staff personality was vitally important. A resident becomes reluctant to even ask to go to the bathroom if staff seems stern, impatient, resentful, or frustrated. A cheerful, encouraging, patient, and friendly staff eases every day and makes the resident feel loved rather than a burden.

3. Level of Socialization

There seemed no point in a lovely living room that was covered in plastic. Clearly no one spent any time there. An opportunity to socialize was important. Maybe it is easier for the staff if residents stay in their bedroom, but it seemed a lonely cell-like arrangement to me.

My Care Home Decision

When I made my decision, I based it mostly on the staff. It wasn’t the prettiest home I’d seen, but the staff was awesome—protective, outgoing, lively, attentive, kind, loving, patient, and understandable. Most of the residents spent the day in the living room rather than their bedrooms. There was even a resident pet to add entertainment and a homey feel.

The Results

With the increased attention and socialization, Mom improved after moving there. She started eating again. Her swollen and bruised ankles returned to normal. Her mood lifted. She no longer cried and stated, “I hate it here” as she had at her assisted living facility. It pleases me no end to hear her bantering with the staff and calling them “honey” or “lovey.”

Just like a job that is made or wrecked by the people you work with, a care home is made by the staff. I highly recommend making that your first priority.

 

To read related posts, click here for “Mom Stopped Peeing on Me. Thanks, Care Home!” and click here for “Care Home Suprises.”

Dealing with Delusions and Memory Loss

Every now and then, I share something going on with my mom, such as increasing delusions or nearly complete loss of short term memory. I am sometimes asked, “How do you deal with it?” The first thing I say is that I write about it. I have this blog to help me express and share my feelings and experiences. I always found that putting something down on paper helped me process and understand it. Otherwise, it just ping-pongs around my brain without any resolution. But there are other strategies that I find I unintentionally use.

Accept the Change of Roles.

By the time a parent suffers from dementia, most of us have related to our parents as peers for a long time.  (Well, maybe we change our language a little bit.) It is sad to experience a parent losing memories, being confused, and having delusions, but it is not threatening. I am not a confused insecure child with a parent who, for example, has mental health issues that are scary to me. A child does not understand what is going on and is not equipped to take care of the parent, although he tries to do that very thing.

As an adult, I can easily move into the caregiver role just the same as most people do as their parents age and become increasingly dependent. The parent with dementia becomes much like a toddler.  They need a lot of reassurance, care-taking, help with communication, soothing from fears, and explanations of what is happening at any given time. All this is done with love and respect for the person inside.

Delusions: Don’t Panic!

It is important not to think that every downward step is here to stay, that this is how it will be from now on.

Earlier this week, my mother asked me, “Have I told you what has been going on here for the past two weeks?”

She then went on to tell me that a group of people from England were staying with them.

“Oh, how nice,” I responded, thinking she was viewing her fellow residents in a favorable light.

“No, it isn’t,” she retorted.

She went on to describe how odd these people were because they never left, except for one man. Mom seemed somewhat incensed that tourists would never leave the house, that they were eating all their food, that they never spoke at dinner time, and that they expected the staff to just take care of them.  However, her biggest outrage was reserved for the fact that these tourists had given no one any idea of how long they were staying!  How rude!

This was an obvious delusion which held fast regardless of my questions as to where these supposed “tourists” slept, what the staff said about the situation, and other logical responses.  I could just imagine staff being non-committal as Mom asked when the other residents were leaving. LOL.

Mom repeated the story three times as I responded, asked questions, commiserated with her regarding the ‘situation,’ and offered some explanations.

But, there hasn’t been a word about it since. That doesn’t mean it won’t come back. It, or something quite similar, may very well resurface at a later date.

However, that night I didn’t go home thinking, “Oh, god. Now she’s perceiving her life this way, and that’s how it’s going to be from now on.” Instead I thought, “Well that was interesting. I wonder how she’ll be tomorrow.”

And ‘tomorrow’ and since, there hasn’t been another word about it. What I’m saying is, you cannot depend on consistency, so there is no reason to panic and think this is the new normal.

Find the Humor.

Humor is always an excellent coping skill for any situation. It is in both our personalities that my mother and I laugh a lot about annoying situations. It is so good for her to laugh, for me to laugh, for us to laugh together. We speak for the resident cat as we imagine what she is thinking. We make jokes about ourselves. In our opinion, we are hilarious. This keeps Mom in a good mood and definitely helps me “deal with it.”

Enjoy This Time.

Would it sound odd if I told you that I really enjoy this time with my mother?

For the most part, we talk about what went on today which allows Mom to respond with her natural intelligence, ask appropriate questions, display her personality, and see the humor in even frustrating events.

I am more relaxed around her now than I have probably ever been in my life. In the past three months, my relationship with her has improved enormously. I used to be a bit nervous and frequently had to make allowances/excuses for her comments or behavior based on what she went through in her life.  Now, I thoroughly enjoy being around her. She is consistently sweet, something I am not used to.

This is a healing time for our relationship. When she dies, I will feel much differently than if she had died three months ago before I had this opportunity for daily contact. This time is a gift to me. I don’t visit her every day because I feel I have to. I visit her because I enjoy being with her. If she changes and becomes combative and difficult, I still will have this time to remember.

So that is how I am dealing with ‘it’ (delusions, loss of memory). I’m aware that some of these strategies may not work at all stages of dementia, for everyone, or when the relationship is different—a spouse, a friend, a sibling. My mother is three and a half years into this disease. I don’t know what the entire journey is going to be like, but this is where we are right now.

Because this entire blog is about dementia, many posts cover delusions and memory loss.  For just a few related posts, click here for “Inconsistent Memory vs. Nightly Rituals.”  Click here for “Mom Discovers I am Her Daughter.”  Click here for Creative Conversations,” and click here for “Happy Birthday to You: Birth and Death.”

 

Mom Stopped Peeing on Me. Thanks, Care Home!

Improved Health in a Care Home

All I want for Christmas is . . ..   Sometimes it’s the small things that make you happy, like when your mother quits peeing on you. I am happy to report that there have been many improvements in my mother’s physical and mental health since we moved her out of assisted living and into a care home.

Mom refused to eat during her last week in her assisted living facility and had to be hand-fed. She is now eating full meals, albeit eating mainly with her fingers, but who cares? Her ankles were swollen and bruised and now look great. She peed on the floor and on me when she first arrived, but now manages to get all the way on the toilet before letting loose. She didn’t sleep through the night. Now she does. She didn’t understand simple instructions, but now she does.

What a difference dedicated care makes. And increased socialization.

More Flexibility for Me

Now that Mom is settled in, I go there more than I have her over at my house. That is because my swollen foot turned out to be the onset of arthritis in another of my toes so supporting Mom’s weight in and out of the car and in and out of the bathroom is agonizing. Also, it just strains and pulls muscles in my back and neck, so I end up slightly miserable for days.

However, we did have her here for Christmas and had a lovely day listening to music, chatting, napping, drinking tea and eating cookies, and having lunch and dinner. While my husband and I were preparing dinner, Mom asked if there was anything she could do to help. Ummm. I wonder what she would have done if I had asked her to set the table.

Another time when she was here for dinner, I started to take her plate when we finished. Mom put her hand over mine and magnanimously told me, “No. Leave it. I will do the dishes in the morning.”

“Oh, thanks, Mom.” I left it and simply cleaned up after we got back from returning her.

Life in the Care Home

The staff of the care home is warm, friendly, funny, loving, attentive. I love going there. It is my home away from home, and how often can you say that about a care facility? People make all the difference. I chose a home based on how I felt about the staff.  (Click here to read “Choosing a Care Home.”)

I have seen far more Hallmark movies than I ever have in my life. (Main character cannot form attachment due to some past grief, meets someone, relationship seems doomed, but then magically all is resolved on Christmas day. On to the next stupid predictable story.) I have watched my first “Ellen” show and many reruns of “Family Feud.” Daytime tv is amazing. But the jokes the staff, the five residents, and I make about the shows or even the commercials make it all fun and homey.  (Click here to read “Care Home Suprises.”

Mom is very sweet. If I leave her at the time she has dinner at her care home, she always asks if I am eating with them and tries to offer me part of her dinner. She was eating a grilled cheese sandwich with tomato soup the other night and tried to give me her sandwich.

I told her, “Oh thanks, Mom. I’ll get dinner with Fred (my husband).”

“But do you have things like this?”

“Yes. We have bread, and we have cheese.” Everyone is laughing. I announce, “She is so sweet. She would give me the food off her plate.”

This is in contrast to when she thinks I’m trying to kill her.

Mom Seems to Feel Safe in the Care Home.

I mentioned Mom’s running monologue in my late November post.  (Click here to read about the difficult trip transporting her 440 miles in  “Meeting Financial Challenges.”)  You can hear her talking, but it’s not loud enough to understand. A couple of weeks ago, we were taking her back, and she was actually talking loudly enough to hear.

Mom muttered, “These two people . . . coming to get me . . . coming to kill me.”

I decided to brave it. “Who’s trying to kill you, Mom?”

She looked at me startled.  She didn’t think anyone could hear what she says.  I let her off the hook and reverted to my usual coping strategy. “We’ll have to get Sherlock Holmes on it right away.”

Mom laughed. (Cue “Twilight Zone” theme music.)

There seems to be two parts of her personality operating—the kind, sweet, ‘normal’ one and the dark paranoid one. Makes me a little uneasy, but I know I can dodge her, gimpy as I am, if she decides to knife me in self-defense.

So I’m very blessed. No more getting peed on. I have a mother who would give me her own food. And I can outrun her if her thoughts that my husband and I are going to kill her get the upper hand.

Life is good.

Meeting Financial Challenges

November was a difficult month for many people. So much to say about that, but I restrict myself to the focus of this blog. At the beginning of this month, Mom’s assisted living facility informed us that it was time for Mom to move to a board and care.  Her needs exceeded their services even with the additional aide we paid for. In the interim, they wanted us to provide a caretaker to help the aide with her.  Yikes!  How were we going to meet the financial challenges?

Geographical Factors  

My siblings agreed with my proposal to move Mom down south near me. It’s far less expensive than where she is. I’m retired and can visit her every day. And, it gives my younger sister a long overdue reprieve from bearing the brunt of caring for Mom.  That included eight years of having Mom live with her and my brother-in-law!

However, if you decide to move your loved one to another area, keep in mind that travel is difficult for people with dementia.  Air travel is faster, of course, but think about the time it takes to get to the airport, go through security, wait for your flight, and then disembark at your destination, collect your luggage, and then travel from the airport to wherever.  That is a lot of changes for someone who is confused.  If there are health issues that can be affected by high altitude, that is another consideration.  And finally, getting to the bathroom on a plane is not easy even for someone who is ambulatory.  How would two people fit in those tiny closet “bathrooms?”

We chose to travel by car, which had its own drawbacks, but at least it didn’t cost us a small fortune.  (See the section, “The Trip,” below.

Finding a Caregiver  

Surprisingly, it was more difficult finding a caregiver than finding a care home near me. (Click here to read my post “Choosing a Care Home.”)  Agencies were either too far away from Mom’s facility or too expensive.  Way too expensive.  We finally decided to just hire someone ourselves rather than go through the agencies.

I searched online for caregivers, conducted the initial phone interview, and then passed likely candidates on to my sister.  She then set up the face-to-face interviews. We found an awesome woman and promised the assisted living that she would start on a certain day.  Unfortunately, that fell through when a personal emergency in her family caused her to back out. We moved to the next person on my list.

Pressure to Find a Caregiver FAST

In the meantime, my sister received daily calls from the assisted living facility reporting new problems with Mom. She wasn’t eating. Next, it was that she was spitting up her Ensure. Now, her ankle was swollen and bruised. Worst of all (for them), she wasn’t supporting her weight any more. When was a caregiver starting?!!

My sister assured them we found a place for Mom to move to and were working on the required physician’s report, TB test, etc. to get her moved as soon as possible.  That gained us a few days of patience.  However, we kept losing caregivers before they could even start.  It got to the point where my sister dreaded showing up at the facility as each promised start date passed.

At last, success. At least we thought so, but Mom’s facility nipped it in the bud because we didn’t have workers comp for the caregiver. Who knew? They told us we could hire whoever we wanted, but neglected to mention that detail. We gave up, re-contacted the expensive agency, and hired someone for the duration which was up until Thanksgiving.  The cost was astronomical.  We told ourselves we would recoup the money over time as the new care home would cost half of what Mom was paying for the assisted living plus the part time aides (before even adding in the caregivers).

Health Scares Jeopardize Our Moving Plan

In the meantime, there were health scares with Mom. As I mentioned above, we were told she was spitting up her Ensure, but the aide neglected to notice there was blood in it. When my sister did Mom’s laundry, she detected the blood on Mom’s sheets. My sister immediately made an appointment with the doctor.

The next thing my sister knew, Kaiser calls her not about the blood, but about Mom’s swollen ankles (plural). It had been ten days since the facility advised my sister about one ankle being swollen and bruised. We speculated at the time that Mom tried to get out of bed on her own and hurt it. The facility never clued us in that it was both ankles, which suggested a much different cause.

We worried that Mom had congestive heart failure or something else. My sister expected to be rushing her to the hospital. We sent alarmed emails back and forth. I wondered if Mom was even going to be well enough to move.

After seeing photos of the ankles, the doctor thought it was not an emergency.  She decided at Mom’s subsequent appointment that it was a result of Mom’s age and now being wheelchair bound. She recommended elevation and compression socks. Given that no more blood appeared in the spitting up episodes, that scare was downgraded, as well.  Mom seemed to have difficult swallowing, so we did not feel completely relieved. However, we were back on track.

The Veterans Administration Provides Care Benefits for Spouses!  

My third project all November was to pursue Veterans benefits for Mom as a spouse of a veteran. Unbeknownst to us, Mom had been eligible for what is called Aid and Attendance benefits to the tune of 1150.00 a month for the past three years. We missed out on all that money!  Now that we had been tipped off, I got that process going, as well.

IF YOUR LOVED ONE IS A VETERAN OR A SPOUSE OR WIDOW/ER OF A VETERAN, PLEASE BE SURE TO CHECK OUT THE RESOURCES SECTION.   Resources

Moving Out  

By the skin of our teeth, we managed to get all the paperwork done in order to move Mom over the Thanksgiving weekend. My brother and his wife drove out from Idaho. Fred and I drove up from Southern California. My other sister popped over from the Bay Area, and we all converged on my younger sister and brother-in-law.

The day before Thanksgiving, my sister and I conducted a secret special op while Mom was safely occupied in the dining room. We hauled  bags of her clothes, some photos, a few knickknacks, her walker in case she was ever able to use it again, and her companion chair down the back stairs and stuffed it all in the trunk of my car.  Both of us had foot injuries, and it was hot to boot. (LOL–foot/boot. Never mind.)

I told Mom on Thanksgiving that the next day we were going on an outing.  We were bringing her down near us so she could visit with us and see our new house. Yeah, yeah.  It wasn’t the complete truth, but she wasn’t going to remember what we said anyway.  However, she would remember that she was going “out.”

The day after Thanksgiving, Mom, my husband, and I set off on the 7 1/2 hour trip south, leaving everyone else to move her furniture and belongings out of her apartment at the assisted living facility, clean it, and complete the moving out paperwork.

Good-bye to that three-year phase of Mom’s life.

The Trip

I won’t lie, the trip was not easy. It was an ordeal to deal with the bathroom stops and support Mom’s weight while getting her pants and Depends down and up. Both times she peed on the floor due to the fact that she now starts peeing as soon as she gets within a foot of a toilet. I was in a sweat after each time. The next day, not only were my neck, arm, and back muscles sore, but I also couldn’t bend or turn my wrist for the first couple of hours.

But the real trial was the psychological warfare. Mom kept up a running conversation loud enough for us to hear the sibilance and murmurs, but never loud enough for us to actually understand what she was saying. I wanted to scream at her, especially as we descended the Grapevine on Interstate 5 and entered the L.A. basin with about six freeway changes to accomplish in crazy traffic.  (Click here to read the post, “Mom Stopped Peeing on Me. Thanks, Care Home!”  It describes an example of what Mom is actually saying.  In this case, it’s a bit disturbing, as in “paranoia strikes deep.”)

Moving In

Somehow we all arrived alive at her care home, although more than an hour later than I expected. The clever staff gave Mom ice cream and introduced her around.  This gave us time to unpack enough of the car to make sure she had pajamas and a change of clothes for the next day, to check in her medications, and to let the staff know that she had eaten no breakfast and only half a spoonful of yogurt and a tiny sip of soup for lunch that day.  (I don’t want to talk about the restaurant stops.)

By the time we were done, Mom was happily chatting with her new roommate. We let her know we would see her in the morning. There was a moment of panic in her eyes so another explanation of where she was and additional reassurance was in order.

My husband and I left her with fingers crossed that she would sleep well. We were barely speaking to each other due to every last nerve being stretched. We were completely spent and grateful that it was only a four-minute drive to our own home. My husband poured himself a stiff drink while I got out of my sweaty clothes and took a shower. The only thing we unloaded from the car was a care package of leftover Thanksgiving food that my wonderful sister gave us. Without it, it would have been cheese and crackers for dinner because we had no energy to prepare anything.

In Retrospect

Three days later,* I am delighted to say that Mom is happy, eating, and sleeping all night. She thinks everyone is “so nice.” Her roommate is thrilled to have her, and Mom isn’t alone at night. I see her every day. I mainly bring her to our house for three or four hours, but one day I just visited her and the other residents for an hour and a half. Every time I take her out, she thanks the staff for their hospitality and says how nice everyone has been as if she is not coming back. It’s pretty funny. It was a herculean task, but the result definitely seems to be a success.

And that is how I spent my Thanksgiving weekend.

I hope you can see from this post that there are many factors involved in meeting financial challenges and that decisions need to be made faster than you are likely to want to make them. So it’s a good idea if you can look ahead and imagine what your plan will be if your loved one needs more care and/or needs to move.  Check out the resources available to make sure your plan will work.  If possible, explore a Plan B and a Plan C.  Consider possible surprises.  We did not expect to be asked to provide a caregiver in addition to aides while Mom was in an assisted living facility.  We thought she would either be there or move to another facility.  That unexpected demand caused us a lot of stress, work, and expense.

* I wrote this two days ago during a four-hour wait at Urgent Care and the Imaging Center because of a swollen and bruised foot. It’s taken me this long to type it up what with all the “To Do’s” associated with the move, spending time with Mom, and reduced energy due to a well-timed cold. My sister went through all this plus hauling Mom into Kaiser and clearing out the apartment with a broken ankle while hosting five people in her home for 2-3 days, plus Mom on Thanksgiving. Are we glad November is over? We are definitely giving thanks.

Exercise in Frustration: Meeting Increasing Needs

The dementia decline is not a smooth one. Your loved one goes along for a while at a certain level. Then there is suddenly a big dip. Sometimes there is a little bounce back. Sometimes, it remains another permanent loss, and that means meeting increasing needs.

The Decline  

This has been a stressful week. We celebrated Mom’s birthday last week. She enjoyed it, but we noticed she was weaker.  Without my husband there, I could not have managed all the many transfers. There were many–from chair to wheelchair to car to wheelchair and then to chair every time we went out.  If we moved from her apartment to the downstairs lobby of her assisted living facility or back up again, we at least didn’t have to deal with the car part. I had a hard time changing her into her pajamas that night because she could only stand for a few seconds. This was a definite decline from the month before.

So it was not a huge surprise when my sister emailed me that Mom’s aides reported that she was very weak. However, additionally she reportedly didn’t understand simple instructions and now was starting to pee before even getting on the toilet. The facility recommended we hire a caregiver to help the aide with dressing Mom morning and night.  Our other option was to move her to a board and care facility, which would be much smaller and able to provide greater assistance.  Either one meant significantly more expense.

Meeting Increasing Needs (or at least trying to)  

As a result, I spent a good part of four days researching and talking to caregiver agencies.  I also talked to a senior care consultant whose job it is to help us find Mom’s next home. Somehow, when someone calls you back, someone else always calls while you are still on the line. It seems like the phone is always ringing even when you try to sit down to dinner. I also had a difficult time checking back with Mom’s assisted living staff to make certain I was asking for the amount of care that they required in order to keep her until we could move her.  The staff I needed to speak to never seemed to be in. It was stressful.

Paying for a caregiver is extremely expensive. Just to have someone come in for two hours a day would double Mom’s monthly cost.  That is not sustainable for very long. We still don’t know how much the board and care homes charge, so there is a lot of financial stress that is accompanying the stress of Mom’s deterioration.

Taking care of a loved one long distance is frustrating. I cannot set up appointments and meet with these people myself. I have to set them up for my sister who lives in the same town as my mom. She is working, so consulting with her as I go along is iffy.

And Then the Situation Changes Again  

Three days in, the staff person at Mom’s facility finally called me back and told me that they actually wanted a caregiver for my mom 24/7!  I was dismayed to say the least. This meant that the caregiving agency needed to be very close by, completely negating the time I had already spent and the appointments I had already set up. So that day I made more calls to secure a local agency that could guarantee having someone available, arranged for the physician’s report to be sent from Mom’s doctor, and prepared for Mom to move asap as we cannot pay an additional 500.00/day (yes, day, not month) paying for a caregiver.

I am waiting to hear whether I can provide some of this care myself until we move her or at the very least when I should fly up to assist with the move, the packing, and getting Mom settled into somewhere new.

When I’m not on the phone or consulting with my sister, I wonder how Mom will respond to the move. She might like the new more homey environment better, but any change is always a risk as to how it affects her. We worry and at the same time know she might not even notice.

It’s been nice to have her in the same place for 2 1/2 years. When this all started three years ago there were a succession of moves—the hospital, skilled nursing, an assisted living facility half an hour north of where she lives, a move within that facility all in the first six months.  In addition, we packed up her apartment in which she could no longer live. We felt that we had entered the moving business. Then finally an opening came up in an assisted living facility back in her hometown where she has been ever since. It’s depressing to think of packing everything up yet again. This time, she will likely be moving into a furnished room. So that means disposing of her furniture and most of her clothes. And so we whittle down again.

We are on edge, feeling pressured by her current facility to do something quickly.  Yet, we do not have all the information we need.  We wonder what is best, what is financially feasible, and of course can in no way predict the future.

I am now on day five of this. Instead of making progress, I am getting nowhere.

For a related post, click here to read “Exercise in Frustration: Meeting Financial Challenges” and click here to read “Choosing a Care Home.”  Also see the Resources page, especially the financial aid provided by the Veterans Administration for both veterans AND spouses–click here.