I Think Tomorrow Will Be a Really Hard Day

I arrived home from the hospital today to find flowers from my husband, and numerous birthday wishes on my facebook page.  I needed to hear those sweet words from dear friends.  Not because it is my birthday, but because it has just been a hard day, and those words were like salve on an open wound.  God has blessed me with many dear friends, and I am so grateful for all of them tonight.

Mom was transferred to the “bigger, better, city” hospital on Monday afternoon.  She has undergone more testing and a laparoscopic surgery.  The doctor removed her ovaries and fallopian tubes and a sample of the peritoneal lining.  Although they have found no cancer yet, the doctors are so sure of that diagnosis, they continue to search for the source. 

Mom looked weary and tired today; so very tired.  And discouraged.  She is sick and tired of being sick and tired.   She hears the doctors’ reports and repeats some of it back to them, but she isn’t grasping the probable diagnosis.    Once the doctor leaves the hospital room, Mom reverts back to talk about a bowel blockage and surgery.  Surgery isn’t even on the table anymore.  Her bowels are working and they have started her back on a liquid diet.    Mom never mentions the word cancer to any of us.  At first I thought maybe she just didn’t want to talk about it, but I’m not sure any more.    I pretty sure she does not have the capability, any more, to grasp much of what the doctor says.  It is confusing!  I have to ask many questions myself to clarify his medical lingo.  And even though Mom definitely knows what a cancer diagnosis means, it just doesn’t seem to “stick”.

And for now, that is a blessing.

I think tomorrow is going to be a really hard day.  My sister wanted me to stay home tomorrow and not make the hour-long trip to the hospital.  The city hospital is in her hometown, and now she is the “boots on the ground” — the one stopping by the hospital and checking in with Mom on a daily/hourly basis.    But I think I have to go.  It will be 48 hours since the surgery:  I’m fairly certain we will get the results back tomorrow.   I am prepared for bad news.  Words that the doctors have thrown around this week are spinning in my head.  Malignancy. Studded. Metastasized. Chemo. These are not words that are said lightly.  Doctors don’t use those words in passing.

I think it is going to be a really hard day.

This kind of cancer — peritoneal — is usually found in the later stages.  This cancer could account for all of Mom’s symptoms over the last several months.  The symptoms we have attributed to AFib and Congestive Heart Failure.  The weight loss, no appetite, abdominal pain, indigestion… the list goes on.  The pieces are fitting together like a puzzle.   This kind of cancer will not require surgery.  It will require Chemotherapy.  Mom already looks like someone who has had chemotherapy.  I don’t know how her frail weak body can take the poison.

I said in an earlier post that I wouldn’t borrow worry.  I know that is exactly what I have done here.  We have no clear-cut diagnosis.  Mom has defied the odds many times over the years, and escaped cancer diagnosis.   But I am worried.  And I will go to the hospital tomorrow.   There is nothing here more important.  Nothing.  That is where I need to be.

I’m not sure what her reaction will be — the dementia comes and goes.  I’m having trouble knowing exactly what she is comprehending.  But if the doctor comes in with a concrete diagnosis and treatment plan, I want to be there to help her “think” it through.   I know my sister will be there, and my brother too, yet I feel compelled to be there as well.  She needs us now.  Tomorrow may be the hardest day of her life.  Mine too.

 

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I Resolve Not To Worry Today

I only spent a few hours at the hospital with Mom yesterday.  She is stable and receiving great care.  She has had a lot of visitors as well.  I decided to take a few days and get caught up here at home.  I feel a little guilty about taking any pleasure in her hospitalization, but knowing others are tending to her gives me the opportunity to do some cleaning, yard work and grocery shopping.

I got a few things done outside yesterday, and this morning I had tackled my bedroom and was just heading to the bathroom to give it a thorough cleaning when I decided to call the hospital and check in with Mom.  She sounded a little agitated or discouraged or…  I can’t quite put my finger on it.   She says her tummy is still bloated and tender.  I tell her I’m going to call the nurses station to get the update from the doctor.  My assumption is that once they allowed Mom to have “food” (liquid diet only), her bowels acted up again.

After being admitted to the hospital on Thursday, the doctors decided to run more tests and do everything possible to avoid surgery.    At first, they said her bowel had a blockage, but have since back off that diagnosis.  There is unexplained fluid in her tummy.  Even though its a holiday weekend, Mom is getting xrays, ultrasounds, and physical exams.

When I call the nurses station and talk with Mom’s nurse, I am prepared for her to tell me that they took Mom’s diet away and she is back on ice chips only.  I am prepared for them to talk about a bowel blockage.   I am not prepared for the word I hear: cancer.  What?  Some of the testing that has been done has shown a high probability of cancer.  Another doctor is being called in this afternoon to do a physical exam.  The nurse assures me that the doctor explained thoroughly to Mom that they were testing her for cancer.

I drop my dust cloth and do not even bother to put my sweeper or cleaning supplies away before I change my clothes and head to the hospital after all.  It’s one thing for Mom to watch TV and rest while waiting for test results, but it’s quite another thing to be alone in the hospital as you ponder a cancer diagnosis.

When I get to her room, she appears relaxed.  She doesn’t seem upset at all.  I guess that is the blessing of dementia.  Your short term memory isn’t worth a hoot.  So even though the doctor and nurse explained that the fluid could be caused by cancer, Mom doesn’t seem to remember that conversation.    I decide not to “go there”.  Why borrow worry?  There will be plenty of time to talk and worry and plan if or when that diagnosis becomes a reality.

We make small talk for awhile and then her liquid lunch arrives.  Mom seems very unimpressed with the choices on her tray.  I agree.

I haven’t even let myself think about the cancer today.  I can’t think about it yet.  If I wait a day or two, maybe I won’t have to think about it ever.  The test results are not back yet.  I am going to wait to worry.

Was it just Wednesday that I was thinking,  ‘we are managing the AFib and Congestive Heart Failure pretty well.  We are dealing with the dementia and trying to get educated about that disease.  Mom can’t live alone, but she could live in an assisted living apartment, and still have a lot of independence’.  I thought most of the really hard questions were out of the way.  Then Bam!   Cancer.  Wow.  I wasn’t expecting that.

Does that mean chemo?  Radiation?  Or not.  She is almost 84 years old and has been a very sick woman for several months.  She has begun to gain some strength back, but is still 45 pounds lighter than she was six months ago.  She is weak.  She is frail.

What does a cancer diagnosis mean for her?

Now that I have sat down from a busy day, and begun to relax, I realize “not thinking about it” may be impossible.  Yes, it will probably fill my mind for the next several days as we wait for the holiday to be done, and the full hospital staff to return to their duties.

This is a long and winding road:  This taking care of an elderly mother.  Just when you think you “got it” and things settle into a routine, a new challenge slaps us in the face.  Isn’t AFib, CHF, and dementia enough?  Don’t we have enough to worry think about?  Cancer.  No.  I envisioned a heart attack.  I almost expected a fall and broken hip.  I even thought the dementia could actually be Alzheimers.  But not cancer.  It wasn’t on my radar.

As I finish up this post, I hope to end my train of thought about the cancer.  Yes, she may have cancer.  But maybe she does not.  She has defied the odds many times before.

I will not borrow trouble for today.

I resolve not to worry.

And I pray that Mom does not have cancer.

What Matters Today is that She Lives Period

I am sitting in the ER watching my mother attempt to sleep.  The nurse just gave her pain meds, and they are just kicking in.  When she walked into my kitchen this morning, I said, ‘Mom, let me feel your tummy’, and sure enough, it was just as solid as a woman who’s six months pregnant.  ‘Oh, Mom, get your shoes on.  We need to go to the ER’.

This isn’t the congestive heart failure tummy.  This is not water retention.  We are waiting for X-rays, but if I had to make a guess, I’d say her bowel is twisted — again.  This poor woman.  This is exactly where we were a year ago.  Twisted bowel.  Surgery. Two weeks in hospital.  Complications.  And since December, she has been in out of the hospital with Afib and congestive heart failure.  She has lost 45 pounds in the last 5 months.

How much more can her body take?

How will this affect her dementia progression?

What am I saying?  Can she even survive another operation?

As she finally rests, I think how insignificant the decisions of the past few days have actually been.  Does it matter where she lives?  No it does not.

What matters today is that she just lives.

 

 

 

 

 

I Don’t Blame Her — It Stinks

Yay for Mom!  She left on her golf outing this morning at about 7:45.  I think she putted on the green of the first three holes and just rode in the cart and observed her friends the rest of the day, however, she isn’t sure about the details;  she says maybe she only putted on one hole.  She went out with her golf buddies for lunch, and returned to the house at about 3:00.  She used the bathroom and hobbled to her chair where she crashed for two hours.   She has been reading the paper and watching the news for the last 2 hours, only wanted a bowl of cereal for supper, and now at 8 p.m., she is heading to bed.  I think she’ll sleep well tonight.

The retirement village tour has been canceled for the immediate future.  We need to figure out if Mom can live independently or if she needs assisted living.  She has several doctor appointments coming up, and we are hoping to glean some valuable info from the doctors.  I talked extensively to the Directors at the village today, and I think it’s time for a family meeting — with Mom included this time.   Tomorrow is the day.

We are going to use the “D” word.  We are going to be frank.  We are not going to argue or be unkind.  But we have been tip-toeing around this confusion dementia diagnosis long enough.  I’m not looking forward to it.  It will be a hard, heart-breaking meeting because we have to explain that she isn’t going back to her apartment.  We have a couple of options for her, but she won’t be a happy camper.   I don’t blame her.  It stinks.

Today: Hands Down No

The meeting with my siblings was productive.  We threw out 10 options for Mom’s care.  Although some of them were just flippant, like:  we can send her to her best friend’s house to live.  She loves her best.  Not really, but we were just trying to inject some humor into our conversation.

I think we came away with 2 viable options.  Either we get her into the nice retirement village that is relatively close or she stays here with me.  There really are no other choices.

Everyone was really excited about this village.  Mom would live independently, however the apartment is set up for seniors with extra care options for a little more money above the rent each month.  Sounds perfect.   I have an appointment to go see these homes on Wednesday morning.  If they indeed look suitable, we were going to present this option to Mom at the end of the week.

But today Mom is having a bad day.   Both strength and memory seem to have failed her today.   I had a day planned to visit a couple of local shops, lunch out, and then pick up some fresh flowers from the nursery before heading home.  All things that she can do and enjoy — no walker or “exercise” involved.  Shopping, lunch and flowers — sounds like a fun day to me.

Before we left the house, she asked me 5 different times where we were going.  (sigh)  I parked the car at the curb between the two shops I knew she would enjoy.  Maybe 20 steps to each one.  She struggled.  After those two stops, we headed to the cafe’ across the street.  Again, just a short distance, yet it was all she could do to get to the door.  It was exhausting for both of us.

After lunch, we decided to at least try the nursery as she could push the flower cart.   However, after the first few minutes, she opted to go back to the car to wait for me.

We did go get our nails done as she had 2 gift certificates that were about to expire (from Mother’s Day a year ago).   I decided that was a safe option as she only had to sit there.  Whew.

She has even decided she may not go to her golf outing tomorrow morning.  ‘I think I’ll just wait a week.  If I go, I’ll just want to play.’   She knows how much work today was for her and for me.  I wish I could see inside her head and know what she is thinking.

My sister called just minutes after we got home.  Mom said we got our hair cut and went out to lunch. (sigh)  She couldn’t remember anything else we’d done, although, later in the conversation, she did remember that I had gotten some flowers.

This was a discouraging day.  If I had only this day to judge whether she could live alone:  Hands down: no.

Hopefully, the tour at the retirement village will lend some light on our situation.  I have high hopes that I can get some guidance about Mom’s future.

She has asked me 4 times today when she gets to go home.   How long can I put her off before we tell her, ‘never’.  I can give her so much, yet I cannot give her the one thing she wants.   It’s so sad, and I just want to cry.

The Day of Decision

It’s early Sunday morning, and everyone is still asleep, but I am restless.   This is a day of decision for my Mom.  My brother, sisters and I are going to meet for supper and discuss Mom’s care.  She is determined she is going home.  We thought it best to brainstorm first with each other, and then sit down later with her and talk about the options.  My daughter is going to distract “Gramma” with an invitation to watch a movie.

This is the closest thing to a “date night” that my husband and I have had in months.

I have very mixed emotions about my mother (ha!  no surprise there.)  Yes, there has been a total disruption of my life since she came to live with us.  Every decision I make every day involves her.  Can she go with me?  Can she stay here alone?  Will she be able to sit that long?  Will she be able to stand that long?  Where are the restrooms?  Can someone come here to be with her while I slip away for a few hours?  My mom is at the top of the list every day.

However, there has been peace and comfort in this arrangement.  I know she is eating well.   I know she isn’t driving.  I can manage the congestive heart failure easier.  I know when she remembers.

And I know when her stories are a jumbled mess.

I am often amazed when I hear her talking on the phone to family and friends.  Her recollection of any given day can be totally accurate or it can be a combination of things she has done over the past week or two.  Does that matter?  I don’t know.

If she goes home, will she eat right?  No, I’m pretty certain she will not.  Does that matter?  The right answer to that is, yes of course, as it affects her health.  She has congestive heart failure — diet is crucial in managing it.  However, I think Mom would rather live the way she wants to live  — and be happy for whatever time that allows —  than change her ways and be miserable as she lives out her days.

If she goes home, can she organize her day?  Her dementia plays out in confusion and distraction.  She depends on me for everything right now.  But am I helping her or hurting her?  Would she be better if she had to do more herself?  I don’t know.

So we usually leave for church shortly after 9 am.  At 7:50, Mom still isn’t up, and I knock on her door, ‘Mom, are you going to church?  We’ll leave in an hour or so”.  I continue to get ready, but Mom doesn’t get up until 8:45.  Really?  Seriously?  My knee-jerk reaction is irritation with her.  How do I say this?  Church hasn’t ever been her favorite…  church isn’t something she looks forward …  Well, let’s go this route:  Church is something I look forward to each week.  Church is a place where I worship my God and see many of my friends each week.  It is important to me, and I was looking forward to going this morning.  So I am a little honked off that she couldn’t get up.  She has been up at 7:15 every day this week.

She will probably not sleep too late on Tuesday morning when her friend is expected at 8 a.m. to take her for their first golf outing of the season (she just plans to ride the cart and possibly putt a couple of holes).  I express my frustration to my husband.  (Yes, he sees the real, ugly me.)  And he replies, ‘she probably doesn’t even know it’s Sunday’.  Well, yes, there is that.   And even though every day this week, she has talked about going home on Saturday or Sunday, and counted down the days.  And even though we talked about going to church just before she went to bed, she may indeed not remember that it is Sunday.  Or she might.  I don’t know.

Do I go to church? Do I stay home with her?  Hard to believe this might be a day of decision when there is so much indecision.

The one – and only — time I’ve left her alone for 2 hours, she packed up everything she owns.  She had her suitcase full and her shoes in a bag.  The dresser was wiped clean, and all her personal jewelry, perfume and lipstick was packed in her purse.

So when in doubt?  Don’t.

I apologize to my husband for being cranky, and I change into some casual-stay-at-home clothes.  I grab another cup of coffee and walk into the living room to ask my mother, ‘would you like yogurt or toast with your coffee this morning?’

 

How Much Dementia is Too Much Dementia to Live Alone — and Who Gets To Decide?

Home Care Physical Therapy released mom from the walker today.  If you’ve read my earlier posts, you know that Mom hates the walker.  She has complained about the walker.  She has rolled her eyes about using the walker.  And she has said she would not go out in public with the walker.  And yet this evening, she is still using the walker.   I’m not sure I will ever understand my mother.

She made plans with a friend to golf on Tuesday.  She told her that she expected to go home Saturday or Sunday.  So here we go…

Mom is getting stronger.  She is taking care of all her personal needs such as bathing and dressing.  She is capable of getting her own water, coffee and snacks, although, she much prefers for me to do that for her.   She hasn’t fixed her own meal since living here, and I know she wouldn’t fix much when living alone either.   I asked her this morning, ‘Mom, do you want breakfast before you get dressed or after?’  Her reply was, ‘oh just a cookie or two; something light’.    Just for the record, I have never fed her cookies for breakfast.  But still, if asked, that is her first choice.  Cookies for breakfast and lemon pie for lunch — no wonder she had gotten weak earlier this spring when she was living alone.

But her strength isn’t the issue.  It’s the dementia.  Now that I am closely tied to her daily life, I see the confusion.  My siblings see the confusion.  And now, her friends even see the confusion.  But Mom does not.  And to be fair, she probably is just as well as she was for the last six months she lived alone.  But should she have been living alone?  Probably not.  So how much dementia is too much dementia to live alone?  And who gets to decide?