Confabulation Can Be Wonderful

There is nothing like a little confabulation to add joy to your life.  Confabulation is when people make up stories to explain things.  People with dementia are not lying.  They believe what they are saying is true.

Living a Fairy Tale

About five years ago, I gave my mom a pair of Keds I bought and then decided were slightly too small for me. She loved them because they zipped up. Once she was living in the assisted care facility, I noticed that they were pretty much the only shoes I ever saw her in. So I decided it would be nice for her to have some variety.

I ordered her a similar pair in pink because my mother favors the purple-pink colors for her wardrobe. When I flew up to visit her for a few days in September, I brought them along and anticipated a welcomed reception on her part.

Not to be. She didn’t like the color. It was too “orangey” a pink. I hid my disappointment and told her I’d return them for the pale blue option. I reported my failure to my sister when I returned to her house at the end of the day.

My sister, God bless her, told me, “Oh, I wouldn’t take what Mom says too seriously. She changes from day to day. Why don’t you just leave them in her closet? At some point when her aides are dressing her, they will pick them out. She probably won’t even notice.”

The next day, after our outing and a long talk in the lobby afterwards, I walked Mom to her usual table in the dining room. Then I made several trips ferrying supplies, laundry, and miscellaneous facility mailings from my car up to her apartment. I also brought up the shoes and placed them in her closet.

And They Lived Happily Ever After  (The Confabulation)

About three weeks later, I received an email from my sister telling me that she noticed Mom was wearing the pink shoes when she visited her over the weekend. My sister thought I would get a chuckle out of their conversation.

My sister told Mom, “Your shoes are so pretty. I love the color.”

Mom replied, “I think so, too, and I got them for free!”

My sister expected Mom to say that one of her aides had given her the shoes as a gift, but Mom had a much more elaborate story. It went like this: “There was this man walking around here. He asked if I wanted a pair of shoes. I asked if he was selling shoes. He said he had a pair of shoes that someone had bought but had left, so he was looking for someone who they might fit and asked if I would like to try them on. They fit, so he said I could keep them.”

I thought this was adorable. Mom is Cinderella, and the shoe fit!

Note: For a great article about confabulation, click here  to read “Confabulation in Dementia: What Is It and How Should You Respond?” by Esther Heerema, MSW.

For another post from this blog about confabulation, click here to read “Creative Conversations.”

 

Forgive and Forget: Humor with Dementia

It’s a blessing being able to have a sense of humor about yourself and others.  One doesn’t usually expect that someone with dementia can retain that wonderful coping skill, but it is possible, at least for a while in any case.

I was sitting with my mother at her care home, talking with her and teasing the staff. Mom said to me, “I don’t know what you’re going to do when I’m no longer here.”

I startled. “What?”

“Oh, I see.,” she responds slyly.  “You’ve got me . . .” (pointing down) “underground, you naughty girl.” She’s laughing.

I’m laughing, too, but also wondering what the heck she’s thinking. She is clearly making the connection that coming to visit her is a fixture in my daily schedule.  However, where is she planning on going, confined to a wheelchair as she is?  I just can’t picture her hopping a bus, nor even knowing where she would ask to go. Or is she contemplating returning to Northern California where she was previously living?

“Well, I may not be” (pointing) “here. That’s all,” she explains.  Still laughing about my assumption that she was talking about her eventual death, Mom raises her chin and places a hand over her chest. “It’s a good thing I’m a forgiving person. It’s one of my . . .”

“Finer qualities?” I fill in.

“Yes. I’ll forgive you. Forgive and forget.”  She is magnanimous, and I’m still trying to figure out how I ended up needing to be forgiven.

“Well, thank goodness,” I say, relieved to be let off the hook.

Practically choking with laughter, she adds, “Of course with me forgetting is easy.”

“Lucky for me,” I laugh.   This is priceless, I think.  She’s able to see the humor and make a joke at her own expense.

“Yes.”

Mom may have dementia, but she can manage to joke about it and zing me at the same time. I have to work hard to keep up.

Surprisingly, there are many humorous aspects of dementia.  Several of the posts on this blog include humorous occurrences or conversations.  For a few, click here for “Immigrations and Dementia, click here for “Mom Discovers I Am Her Daughter,” click here for “Confabulation Can Be Wonderful,” and click here for “Care Home Surprises.”

 

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.”

Upside of Dementia, III: Preserving Family History

When a parent has dementia, preserving family history almost seems to slip away before your eyes.  This is the time to talk to your loved one about whatever they can remember, which will most likely be their childhood.  It is also the time to reach out to extended family for more recent information.

Mom asks me questions about her family because she doesn’t remember much beyond the childhood and young adult stages of her life. Most of the time I can fill her in, but sometimes I can’t.

One of her brothers settled in Africa, married, and had two children. I know my cousins’ names, and that is all. We’ve never met them. I don’t know if they still live in Zambia or if their mother, who was from Yugoslavia, is still alive. Their father, my uncle, died years ago.

Preserving family history is a precious undertaking, and certainly at least knowing about remote relatives is important even if there is little likelihood of ever meeting them. I have tried searching for my cousins on Google without success. Mom’s questions as well as my own spurred me to reach out to my remaining uncle who lives in England for whatever information he has. This has led to finding out my cousins left Zambia and moved to South Africa decades ago.  Their mother is still alive.  I now have information about employment, marital status, and current names.  This is a huge help which will allow me to find out even more.  A few more years, and this information would no longer be available to me.  Carpe diem!  Seize the day!

Much like having aging parents makes gathering family history pressing, so does dementia when it strikes at any age. There is little opportunity left to find out information, so reaching out to other relatives is a vital resource. I urge you to do it. Now.

Click here to read Upside of Dementia, I: New Relationships.

Click here to read Upside of Dementia, II: Conversation.

 

Mom Discovers I Am Her Daughter

There are memory surprises in dementia.  Most of the time, these surprises tend to be upsetting as you realize your loved one has misplaced or lost another memory.  However, sometimes the surprises are wonderful, endearing, and comical.   And, you just have to laugh.

I see my mother every day.  She knows I’m coming because the staff gets her ready for bed first after dinner and sits her in a comfy spot to wait for me. Mom also asks them if I’m coming, so I know she knows who I am. That being said, every night when I leave, I tell her, “I’ll see you tomorrow, Mom.”  It is always a complete surprise for her because she doesn’t remember that I am there every day. She will also sometimes make comments that indicate she doesn’t know when she last saw me. But she knows me.

How She Lost Me

A couple of weeks ago, Mom asked me if I had her brother’s address.  She wanted to write and thank him for a postcard he sent her. I told her I did, as well as his email address. She seemed surprised. I let her know we keep in contact. I innocently related how I have had his street address since I went to England many years ago, and that we stayed with him.

We then got into a two-hour conversation about her side of the family, covering a few generations. I told her what I remembered and asked her questions. Her long-term memory is still good.  She was surprised that I knew so much about her family history, and kept asking me how I knew. I told her I remembered things she had told me over the years and had also gotten a good family tree from her brother. She continued to be astounded, and I was feeling very accomplished and appreciated.

Then she burst my bubble.

“How are you connected to my side of the family?”

Uh-oh.

How She Got Me Back

I leaned forward and placed my hand on her arm. “By you giving birth to me?”

Mom was floored and speechless for a moment and then opened her arms for a big hug. “Come here and give me a hug! I haven’t given you enough hugs in your life!” She would hardly let me go. It was as if she had found her child who had been lost decades ago. What a celebration! She was so happy.

I was laughing and giving her big hugs. However, on the inside, I was baffled. She knows I’m her daughter. What happened?  Later I told myself, “Well, maybe it was because our conversation went back in time, and she lost track of the here and now.”

The next night she greeted me, “Hello, Suzanne. And what have you been up to today?” We were back on track.

Then she did it to me again.

Who am I When I’m Someone Else?

A few nights later, she said to me, “Since I last saw you, a lady came to visit. She was very nice, and she knew all about my family.”

D’oh!! (to quote Homer).

Again, I leaned forward and touched her arm. “That was me, Mom.”

“Oh.”

I should read my own blog posts. I recently wrote about how fluid things are with dementia and that a change does not necessarily mean that is how things are going to be from then on.    (Click here to read “Inconsistent Memory and Nightly Rituals.”)

My own daughter reassured me, “Well at least you know she thinks you are a nice lady.”
True. And she was very happy to discover I was her daughter. You don’t get that kind of authentic display of affection every day.

It is funny, and you do just have to laugh.

 

(Click here to read another related post, “Dealing with Delusions and Memory Loss.”)

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.”

 

Inconsistent Memory vs. Nightly Rituals

I always thought that dementia sort of followed a general path. Longterm memory stayed the longest. Short term memory went, and everything in between was up for grabs. I’m finding out that it is not quite that simple.  I have found with my mother that there is inconsistent memory–sometimes there, sometimes not.  There are also consistent memory lapses that become nightly rituals.

Inconsistent Memory

My conversations with Mom generally go pretty well, albeit with several explanations and helping her with (or guessing) her intended responses.  However, I have to be prepared for the shifting of understanding from one day to another–the inconsistent memory. For example, some days she thinks she is in England. Other days she knows she is in the States.  (Click here to read “Continental Drift.”)  Some days she has the delusion that the people on TV are looking in through a window at her. Then occasionally she knows it is simply TV. It is that inconsistency that intrigues me.

Nightly Ritual #1

However, there are certain things that never change in her mind, resulting in a nightly ritual that we follow.

Mom is completely unaware of her current surroundings and the people she spends her day with. The two male residents in her care home spend the day in their bedroom. The four ladies spend the day in the living room, sitting in their own particular recliners. It is not a big room. If I pull up a kitchen chair next to Mom, I can touch ‘Betty’ in the next chair.

I visit every night after their dinner.  This time was suggested by the staff so that Mom can stay up later, and we can have an easier conversation on our own. Mom is already dressed for bed and sitting in her wheelchair instead of in her recliner.   This puts Mom next to Betty’s chair-side table. Every night Mom asks me about the two photos on that table. Every night I explain who the people are. Betty is in both.

“Who’s Betty?” My mom asks.

“Betty’s the lady who sits here.”  I indicate the recliner next to Mom.

Mom is trying to conjure up the woman who sits by her every day without success.

“Your roommate,” I try.

Mom’s expression becomes even more disbelieving. “I don’t have a roommate,” she retorts. “What do they call her? I’ve never heard ‘Betty.'” She’s annoyed and going to put me in my place.

“They call her Betty, Mom.”

“Oh.”

Every single night. I even turn the photos away so Mom can’t see them. She picks them up anyway.

Nightly Ritual #2

The other part of the ritual is:

“Suzanne, do you know if there is a toilet here?”

“Yes, it’s the first door down the hall.”

“The hall?”  I point behind her and she turns around searching.  “Do you have to go to the bathroom, Mom?”

“Yes, honey.”

“You were just coming out of the bathroom ten minutes ago, Mom, when I got here. Are you sure you have to go again?”

“Oh, I—”

“Or do you think you could wait until right before bed?”

“Okay. Yes, I can wait.”

Nightly Ritual #3

And that, of course, leads to the next part.

“Where am I sleeping tonight?”

“In your bedroom.”

“I have a bedroom?”

“Yes, it’s down the hall.” I’m pointing again.

“Down the hall?” She’s looking again.

“Yes. ‘Teresa’ and ‘Sarah’ have a room. ‘Dave’ and ‘Jim’ have a room. And you and Betty have a room.”

“Oh.”

“Do I have . . . ?” She points at her body.

“Your pajamas? Yes, all your clothes are there. You’re already in your pajamas.”

“Oh.”

She doesn’t believe me. She’ll never believe me. We do this every night, but she doesn’t recall any of it. Nothing about the hall is familiar to her, and she doesn’t remember Betty is sharing her room or even what Betty looks like. (No need to pay for a private room, people.)

Nightly Ritual #4

By this time, the rest of the residents are all in their beds. The staff are getting ready for the next day, preparing meds, doing whatever breakfast prep they can do in order for things to run smoothly in the morning. In the course of time, chopping or stirring sounds come from the kitchen.

“What is that noise?” Mom asks with concern.

“That’s Anne getting breakfast ready for tomorrow. She’s in the kitchen.”

“There’s a kitchen?”

“Yes,” pointing yet again. “Right next to the dining area.”

“The dining area?”

(I’m screaming inside, patient outside.) “Yes, that’s the table you all sit at.” I’m pointing again. It’s literally ten feet away.

She’s peering at the table. For her, it’s the first time she’s ever seen it although she sits there three times a day with the rest of the residents.

Nightly Ritual #5

More kitchen noises.

“What’s that noise?”

(Aggggggh!!) “That’s Anne cleaning up the kitchen.”

“Who’s Anne?”

(Give me strength.) “She’s the main lady here who takes care of you. You like her very much.”

“Oh.”

Every night. We go through Rituals 1-5 every night. So, when the night comes when she asks, “Why are those people staring at me through the window?” it’s a welcome variation.  I can leave wondering why her concept of tv changes from day to day instead of focusing on the frustration of the nightly rituals.

And no, it doesn’t help that I’ve pulled the drapes and there are no windows uncovered. That would require logic. Something in short supply these days.

 

For other posts related to memory, click here to read “Mom Discovers I Am Her Daughter,” click here to read “Continental Drift (Where Am I?),” and click here to read “Dealing with Delusions and Memory Loss.”)

Continental Drift (Where Am I?)

Memory is an illusive thing, and when you visit assisted living facilities or care homes, you get used to residents not being quite clear on where they are or where they go on any given day.*

One of Mom’s fellow residents thinks the care home is her own home and that everyone else is visiting. There is nothing in her memory telling her that she moved here to receive the round the clock care she needs.  The staff jokes that they are the maids.

Another resident thinks I can drive by her house to check on it and does not remember that it was sold long ago or that she is not in the same city.

Where Does My Mother Think She Is?  

We moved my mother some 440 miles away from where she has lived for fourteen years to a care home near me in Southern California over the Thanksgiving weekend.  Ever since, my siblings and I have all been wondering what Mom understands about where she is. Although I’ve explained it to her many times, it doesn’t stick in her memory.  A conversation I had with her the other night was somewhat illuminating.

We were talking about her brother who spent Christmas holiday in Scotland with his granddaughter and her baby.  Mom asked me, “How would you get from downtown London to here?”

“Well, you would have to take a plane to either San Francisco or Los Angeles and–”

“A plane?”

Uh-oh.

“Well, yes, because we are in a different country, and you would have to fly across the Atlantic to get here.”

Mom is looking at me as if I’m mad. This information is obviously not what she expected.

I soldier on. “And then it would be a matter of renting a car to drive to here.”

“Oh. What does it cost?”

“Oh, gee. I don’t really know right now.”

“Well, what do you pay?”

“Mom, I’ve only been to England twice in my life, and the last time was about thirty years ago.”

“Oh.”

At this point I think, what does it matter? Say anything. “Maybe 800 dollars or so?”

“Oh, well. That’s not going to work,” she says looking disappointed. I suspect she was envisioning a bus ride, and I have burst her bubble.

It seems Mom thinks she’s in England and has been planning an outing either for herself or for her brother so that they can get together.  I can now tell my siblings Mom thinks she is in England.  (And here we were just wondering if she understood she was in a different part of California, not if she knew which country she was in.  Boy, were we way off!)

Memory Loss:  No Passport Needed

The very next night I tell Mom about an article I read about how to stay warm at night without a huge heating bill. I describe the various suggestions, including adding curtains to windows that just have blinds or wearing a nightcap. Mom does not remember what a nightcap is so I try to evoke illustrations of “The Night Before Christmas” or A Christmas Carol. Nothing registers with Mom. I try the women’s version of the mop cap which seems to trigger her memory. I then confide that I cut off the toes of single socks and wear them at night over the sleeves of my pajamas and up over my wrists.

Mom likes that idea and suddenly comes out with, “Well, yes. People think it’s warm here in the States, but it gets cold.”

I am so impressed. Tonight she knows what country she is in.

In the space of 24 hours Mom has placed herself on two different continents. I’m wondering if she’s on to something. Maybe this is Pangea coming back to us, making crossing an ocean unnecessary. Or, as close to the “Star Trek” transporters as we are going to get. Whichever, it is a very exciting prospect and definitely lessens the importance of an unreliable memory and remembering where you are.

*Click here to read “Swiss Chalet, a Sweet Delusion” which describes Mom’s belief that she had bought two chalets and went to one when she got tired of the assisted living facility.

For other posts related to memory, click here to read “Dealing with Delusions and Memory Loss” and click here to read “Inconsistent Memory vs. Nightly Rituals.” 

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.