Wednesday, April 10, 2013

A Place For Dad

Well, I got word today that the assisted living facility (ALF) will have a room for Dad April 18th.  I don't plan to think of "why" so suddenly; sad things happen.

I'm suddenly busy with making plans for next week.  And Dr appointments...  I'm glad I got Dad to a dentist this week; one thing out of the way.  And I got Dad to the eye Dr today; it turns out his cheap drugstore glasses are just fine for his needs and he has no other vision problems.

I need to get Dad to his geriatric internist Dr ASAP for the ALF medical evaluation and will call for an appointment tomorrow.  They can usually arrange an appointment in 2-3 days, so that's OK.

The difficult plans are getting Dad, his personal stuff, and bed to the ALF (near the rest of the family and about 90 miles from here.  I suggested 4 plans to my sister and am waiting for her thoughts on them.  All plans involve a family member driving down here and only one doesn't involve me driving up there.  I hope she likes the one where I don't do any driving.  LOL!

It is all a bit more sudden than I expected.  But if it all works out, I will sure be relieved.  I know that doesn't sound very kind, but I'm a bit worn out.  Even Dad says he feels bad about how much work I do to take care of him.

I won't say I'm "happy" to do it all, but I'm "willing".  I'm sure you understand the difference. 

When I retired from office work in 2006, I came home and told the cats "I'm here, forever, and I'm yours".  I felt complete freedom to just live "my way".

When Dad leaves here in bout a week, I will feel much the same way.  It's been a hard year, and it was an important experience in my life.  I would have gladly skipped the experience, but I'm sure you know what I mean. 

I'm going to speak some truth here.  I won't miss his daily presence.  He has been a demanding "guest" for 11 months.  I was perfectly happy with him living down in FL, and I will be perfectly happy with him living in the ALF for the rest of his days.  I don't have to see my family every day in order to love and care about them.

If Dad had been 10 years younger when he moved in with me, things would have been different.  We could have talked, shared some experiences, etc.  But that was not the case (and he wouldn't have moved in with me 10 years ago).  Every time for the past 4 months, I have regretted each conversation beyond "its dinnertime, go to the table".  His mental confusion has driven me nearly crazy.  Any accidental reference I made for months has caused a long, confused explanation that left me mentally exhausted.  It's not his fault, it's mine.  I should have learned what to talk to Dad about.  Meals, weather, golf channel, etc.  I talk too much when someone else is around.

But the move is about set.  I could make a joke about "the long national nightmare is over" (Ford about Nixon), but that's not really true.  I know how frustrated Dad is about is inabilities.  I know how angry he feels at himself when he can't find words (and I try to comfort him about that).  I know how frustrated he is when he can't walk easily.  I have learned how much he struggles to maintain his personal life and do what he needs to do on his own.

When I watch Dad, I see my own future.  I understand that a day will come in a future decade when I am in his shoes.  While I have a vague plan to "check out" just before I get to Dad's condition, I also realize I might not remember those plans at the right time.  Life is complicated and death is more complicated.

I will miss Dad, in a way.  This has been an intensely "togetherness" year.  But I will be gladder to get my life back.  And it will start in about a week.  I'm not doing cartwheels though the yard, but I will be relieved.

Wednesday, April 3, 2013

A Bump On The Road

Sometimes it seems the universe wants to throw boards onto the bike path.  The room that we were told would become available, will not be.  We didn't know the details, of course, but it seems the family got VA benefits to keep their elder at the assisted living house.

Now, the next room available will probably be from someone who is at hospice care level.  Hospice care is not long-term, of course, and the room might even come available sooner.

None of us want to see any elder taken out of assisted living care from lack of funds, and we sure don't want someone's loved one to die conveniently just to make a room available.  We will simply wait for the wheel of life to turn naturally and offer space for OUR Dad.  Meanwhile, I will "keep on keeping on" and hope Dad has good days until space at this good place is available.

I am going to decline the respite care available locally if I can.  I don't want Dad to have to move twice.  Once will be hard enough.  I can keep answering the same questions each day, the new weird questions, and the daily food difficulties (while at the same time hoping he does not get suddenly worse).

Tonight, Dad suddenly couldn't cut his chicken thigh (a favorite food).  Well, all meat has been becoming a problem.  He wiggles his knife 1/16th" and the meat moves that far too, so no cutting occurs.  He blames the meat or the knife of course.  I asked if he wanted help and he said that I couldn't possibly cut it either because it was so tough.

Well, he can't make full cutting strokes, but he was trying to cut through the bone!  I took care of it, "zip, zip, zip" and he was amazed.  I just said "Long knife-strokes, Dad" (as I've said almost every night for months).  I will take of that for all future meals.  I can get de-boned chicken thighs and serve more meals that don't require knife-work.

He does better with pork stew (roasted Boston Butt cubed up with diced potato/carrots/beans/onion and a flour-thickened herb sauce), peeled shrimp, Italian sausage smothered is slow-cooked red and green bell peppers or spaghetti with commercial meatballs (simmer crushed canned tomatoes with crushed garlic, italian seasoning, and minced onions with the meatballs for 30 minutes.  Commercial sauce has way too much sugar and salt).  No bones, and the meat is either pre-cut or easy to cut (like the sausage).  I slit the sausage down the side and remove the casing.  I've learned to make chicken breast strips (called "chicken fingers" locally) here with dipping sauces too (but Dad thinks he is supposed to eat the sauces with a spoon.

A smile:  Dad is so used to being "cheap" that a drop of sauce is all he wants...  I am so used to making grand meals ("Sunday Dinner" every day) that I hardly think twice about the effort.  That part of Dad's support is nearly invisible to me.  It really doesn't take much effort to make a sauce for two as for one.  I eat spaghetti for the tomato sauce*; Dad wants just a spoonful of ANY sauce.  Cooking for someone else is weird,

But I've learned to stop worrying HOW he eats his food (which used to drive me nuts).  If he thinks the pork stew is soup, that's fine.  If he thinks the dipping sauces are "side dishes", that's fine.  If he wants to scrape the wine/horseradish topping off his beef and put it in his salad, that's fine (as long as he eats the salad).  But I don't want to watch, LOL!  The important thing is that it all gets inside him.  But he eats his meals at a dining table (very traditionally) and I eat on a TV tray while watching science/nature DVDs (about my only TV viewing). 

OK, this has gone from Dad moving out to food.  That's OK, I love food (and at 5'7" and 163 pounds, I'm not too worried about it.  What I DO demand of my food is that it be varied and healthy.  Without ever intending to follow a diet, I find that I am close to "Paleo Diet".  Some meat, lots of non-grain veggies, not much sugar, and plenty of fruit.  I can actually eat "one potato chip" and I have one small piece of chocolate after a meal.  Good quality chocolate, though, LOL!

To connect this back to Dad though, he has to have a standard dessert, and large.  Big bowl of ice cream, a few chocolate chip cookies, I don't worry about it.  I try to get him to eat fresh fruit, buts that's actually more for the water (he avoids water).

We'll get by for the next month or so until there is a room at the assisted living facility that seems best-suited for him.  Waiting an extra month for "the best place he will spent the rest of his life" is survivable with an end to his time here in sight.

Do I want him to be out of here?  Yes.  Do I want my regular life back?  Yes.  Who wouldn't?  But I can keep going for now, and that's the important thing.  It's duty, responsibility, and respect for now.

Would I talk to him often if he was just my next-door neighbor?  Probably not.  He was an obnoxious pain decades ago.  His golf partners used to roll their eyes at the things he said.  At times, he could make Rush Limbaugh seem liberal.  But now is not the time to try to teach him anything.

My job now is to manage his "end of life" issues.

*  I once dated an ethnically Italian girl and at my first dinner there, they offered me the sauce first. I botched it by pouring a load of sauce on my pasta.  The relationship didn't last (for other reasons).  Interestingly,  a co-worker told me about HER first meal with an Italian family and SHE knew not to use much tomato sauce.  I would blame my parents for not teaching me such fine details, but they came from big sauce families.  ;)

"Laugh at the world; it won't care".

Mark

Tuesday, April 2, 2013

One Month

And so much to do.  Dr appointment for TB test and filling out the medical evaluation form for the assisted living house, dentist appointment for 2 bad teeth (that I didn't know about before a  month ago), eye doctor appointment for "real" reading glasses to replace those drug store magnifiers I discovered he has.  Clothes that fit.  He has been wearing 34/30 and he NEEDS 36 or 38/26.  And he really needs suspenders; belts are too complicated for him.

Its my fault, I let Dad decide what he needed  It seemed right at the time.  But I am correcting some mistakes as he moves out of my life.  I just wish I had been more forceful months ago...

Sunday, March 31, 2013

Elder Care

Dad is still trying to find reasons not to move to an assisted-living facility (ALF), but I'll talk about that another day.

Today, I want to talk about me (and, by extension, some of you in a similar situation).  I have been caring for Dad since last May, and it will be this May when he moves to ALF.  There is a chinese curse "May you live in interesting times", because "interesting times" times are not easy.  It has been an "interesting" year...

I tried to think a couple of months into the future for my planning for Dad to move to an ALF.  But I planned a month too short.  Dad is having real problems right now rather suddenly and there is no where for him to go for a month.  You don't have to suggest in-home care, I'm looking into that.  And anyway, this is for others.

My point is that a month is so short a time normally, but a very long time when you are caring for an elder who needs professional care "now".  I'm not comparing myself to others.  Some people are more able to care for others than I am.  But whenever you really think "next month", think "I really should have found a good place last month".  It is so easy to think there is time, and then the day is on you.  It happens far more suddenly than you expect.

And this is a thing you seldom get to learn from for better decisions in the future.  Elder care is (usually) a one-off event.  A parent takes the care of a spouse and then that parent needs care him/her self.  That's you doing that part.  No matter what you think, how many books or newspaper articles you read, you won't be prepared.  You cannot understand dementia, and you cannot understand what it means for a person in your house who can't (please don't jump on me if you are "differently-abled") just walk around. 

Your elder parent will go from difficulty getting out of chairs to a complete inability to stand up at all in just a week.  He/She will very suddenly discover that the time it takes to get to the bathroom only 30' away is longer  than nature allows.  It just happens one day.

No one wants to send a parent to an ALF, but trust me, a month too soon is better than a month too late.  April will be a very difficult month here.  So, for what it's worth, some thoughts on things I wish I had known..

1.  Visit local ALFs months before needed.  Bring the elder.  Take pictures of the place.  Pictures provide familiarity.
2.  Get the Dr evaluation form early and bring the elder to the Dr before required.  The difference in the Dr evaluation from one month to the next can be very informative.  A geriatric Dr is best.  He/She can tell changes in abilities better than you can.
3.  Most ALFs are good, but some are more good than others.  Your elder can help you decide which suits him/her better than you can.  I didn't allow my Dad to be involved.  That was a mistake.
4.  Bedrooms matter.  Size is important.  Your elder will think of the bedroom as a primary living space.  Even if that is not the primary living space.
5.  It's "I need to talk to you", not "we need to talk" when The Conversation occurs about moving the elder to the ALF.  Explain the household situation calmly, and emphasize the elder's care.  Your own stress and tiredness are YOUR problem, not his/hers.  Stick with the elder's physical needs, not the mental ones.  The elder is SURE his/her mind is fine, but does know about physical problems.  Stay calm through endless (and repeated) questions.  There will be many.
6.  Discuss the move daily.  Repetition helps.  They forget.
7.  Get the elder new clothes that fit well.  Everyone wants to make a good initial impression.  Seriously, have you ever seen an elder with good clothes?
8.  Talk to the ALF staff about minor details.  Ask them what residents want that no one thinks of.  They know.   Sometimes its just chocolate chip cookies in the bedroom for late night snacks.  With a nice note from the child.  Or maybe a reminder of how to make a martini.
9.  Schedule visits.  Routine is very important to elders.
10.  Remember that The Conversation is NOT a debate; it's a decision.  Your decision.  There will be "you are kicking me out".  But it really is your decision.  Accept that.  You are doing what is best for your elder.  Keep it in terms of what care your elder needs, not whether you love them.  Of course you love them.  But don't allow that to be the discussion.

I am not feeling guilty now.  I've done what I could and it is time for professional help.  Professionals know how to help an elder better than I can in the last stage of life. When you have been caring for an elder, sometimes the hardest thing is to let go.  Be willing to let go...

Heck, when Dad falls down, I don't really know the best way to pull him back up.  But trained staff does.  I don't really know how to answer his really weird questions.  But trained staff does.

About all I can think of for now...


Saturday, March 30, 2013

And Today

Today, Dad is fighting the move.  The bedroom will be too small, he won't like the food, he will be a minority, the staff won't be friendly, etc.  I will have him talk tomorrow to my sister who chose the place.

But it won't relieve his fears entirely.  He fears the change, and I understand that.  He is happy here.  Too happy.  I attend to his every needs.  What he doesn't really understand is that his needs are growing greater each month.

He doesn't realize that he is reducing his routine every week,  He used to watch any of 5 channels, now he he wants only 2.  His food preferences are diminishing.  He is struggling to get to the bathroom "on time".  He talks bizarrely, but he doesn't realize it. 

Last night, he said that being in an ALF (assisted living facility) in a town 10 miles away from other family was good because he "could bicycle or walk to visit them".  It doesn't get much crazier than that.  He couldn't "bicycle" away from a starving crippled alligator.

And he thinks the move is "too complicated".  OK, it isn't.  My brother and sister will drive down here and my brother will transport the bedroom furniture in his truck and sister will transport Dad.  He can't understand how simple that is to us.

He thinks none of us understand his investments.  I have been filing his investment papers for a year and arranged for his income taxes twice now.   I know them by heart better than he does.  He insists I can't possibly know "that stuff".  Well, of course I do.  10 years ago, he did too.  But not now.

This is going to be harder than I thought. 

I am reluctant to have him visit the place.  Yes, he might think it wonderful. But he is more likely to find trivial faults.

So, drive him 2 hours up to visit the place and 2 hours back, or not?  Pros and cons... 

Friday, March 29, 2013

The Decision

Well, the decision has been made.  An assisted living facility (ALF) has been chosen, I have forms to fill out, Dr appointments to make, etc.  The family has found a good place near most of them (out of my area).  Entry is available May 1st.

I am sad about all of this, of course, but relieved as well.  Dad needs more attention and care than I can continue to give without slipping into martyrdom.

There are so many things to plan. 

That doesn't mean that the several conversations with Dad were easy; they wern't.  But it does mean that HE accepts that he is going to need more physical assistance soon than I can provide.  I discussed that the precise costs depended on the level of care he needed and he asked what those were.  Oh thanks for smooth tranisitions and killer arguments...  When I said that the monthly care costs depended on whether someone could dress, bathe and use the bathroom themselves vs someone who couldn't, he blurted out "but pretty soon I'LL need that help"! 

And then he realized he was needing assisted living care soon.  I discussed waiting lists and the benefits of being where there was proffessional assistance just BEFORE he needed it.  He accepted that he needed to go to an ALF.

There are many more family members where he will be moving to than there are here (just me here and 6 where he is going).

He hasn't given up the struggle.  He raises trivial arguments.  It will be so complicated to move (no), he has so many billing addresses to change (no).  He needs to approve the bedroom (well, no, but only because its better than the one here).

He says he trusts my sister's judgement on the place (except he doesn't really).  He is afraid of something that I haven't gotten him to talk about yet.  We will discuss this again in the early afternoon when he is most alert.

My main purpose is to keep his focus on the positive aspects of moving to a good ALF.  The longer it goes with him accepting that he will be moving, the better it will be.

There will be some more awkward conversations the next few days, but every day without him saying "no" will be a good one.

Tuesday, March 26, 2013

The Last Years

The past couple of months have seen a substantial decrease in Dad’s ability to comprehend the world in general.  I am putting it that way to spare having to give all the details of previous posts.  He just doesn’t understand much of anything these days.  He has brief bursts of comprehension that make thinks awkward. 

He asked me today why he was having so much trouble moving around and why it was so hard just to get dressed.  He asked why he couldn’t understand documents and bills he gets in the mail.  Dad always taught me that honesty was the most important thing in his life.  I’m learned that well. 

I told him that his muscles are getting weaker and that his mind was not as sharp as it was 50 years ago.  Surely those are obvious things.  He said “No, that’s not the problem; I must have a disease”.

How do I explain his “disease” is just old age?  As in the plant analogy, I see Dad’s leaves falling everyday.  There aren’t many left to fall.  When I try to explain that he is “just plain old”, he denies it saying he is just fine.

I have started to visit assisted living facilities.  The first one, Morningside House was GREAT, but I see after looking over the details that they will soon get him to over $10,000 per month from the initial $5300.  The add-ons are outrageous.  They will charge him $1379/month for managing his 3 simple pill medications, $25/month for getting his meds (which cost only $2.50), $70 for every transportation to a DR, and they make a fortune for incontinence.  Its a wonderful place, but they will drain every dime from his pocket and discharge him when he is broke.  And Dad would never accept the basic cost anyway.  I had such high hopes for Morningside House until I (and my sister Susie) starting getting into the details.

I have an appointment with a simpler group house later today.  Sister Susie says the professionals she has talked to (she is professionally related to that work) say those are often much better at half the price, and Dad might accept that cost. 

I know a bit more after the Morningside House visit about what to look for.  Activities are good.  TV rooms are good.  But daily physical care for dressing and hygiene, basic meals, and assumed pill-giving are probably more important. 

Its hard just thinking about giving a parent over to assisted living care.  Telling your elder that it is time is harder.  Making the move is harder still.  I’m still just on that first action.

Monday, March 25, 2013

A Meaning

You may have guessed that yesterday’s post was an analogy.  If you did (and I have never quite learned subtlety) good for you.  Not everyone will... The seeds and young flowers and saplings are the children we raise.  The Fall is the time we change from raising our children to beginning to care for our parents. The Winter is the eldercare time, where we must care for our parents (disclaimer, I had no children, but at 16 to18, I did a lot to raise a new sister). 

Helping to raise my young sister was a joyful experience.  I changed more diapers than most real Dad’s back in the 60’s, did more baby-sitting than most teenage girls, pulled out bee-stingers, bandaged more scraped knees, and played more 4-8 years games than any teenage guy I ever met.  I didn’t mind it a bit, and I was a better guy for it.  I saw that flower grow and thrive.  She died in her “late Summer” of a genetic problem she was born with.  We were always close.

But Summer changed to Fall over the years, and first it was Mom who’s health failed.  It was rapid.  But now I have Dad, at 90.  He lingers like the old mature trees that keep managing to continue as they grow older, failing.  I have a tulip poplar that I have loved for 26 years.  It was mature when I moved here (like Dad).  It is failing (like Dad).  This Fall, it actually sent out a few new leaves out of season.  It is dying (like Dad).  It it trying hard to stay alive (like Dad).  But it is failing and there is nothing I or anyone else can do about it (like Dad).

Sunday, March 24, 2013

The Garden


The Seasons

In the Spring, flowers and saplings appear.  Maybe they were your own seeds, maybe you got them elsewhere; it doesn’t matter.  When they are yours, you give them food and love and care.  It is joyful seeing them grow.  Every day, they seem more promising.  You can imagine how much sturdier they will be next month.  You can imagine how they will adapt to nature and thrive.  As you watch the first leaves opening, you can imagine the glorious beauty they will display one day.  And they do thrive.  Each month you see the changes and the changes are wonderful.

In the Summer, they burst forth with flowers.  You may be a bit tired from all the work involved, but it is worth it.  You are proud of what you have accomplished, and you are proud of them.  They really did most of the growing themselves, but your work mattered too.  You did your best to keep the weeds away, sometimes you supported them while they grew upright and healthy.  You made sure they had everything they needed that you could give them.  They are mature and beautiful!  You still try to keep some weeds away, but they are mostly doing great without your help.  Maybe there are a few fallen leaves, but they are in their prime and some new leaves grow.

You are changing from the nurturer of young plants to the protector of older ones.  It takes some time to realize this, but you do your best to adapt to the change.  As a gardener, you do what you must as best you can.

In the Fall, things are not going quite so well.  The bloom is off the flowers, they droop a bit, and they need bit of unexpected help from time to time.  But that OK, because they are still doing well overall.  In the late Fall, things are not so good.  They feel cold at nights, they aren’t flowering or growing new leaves, and the stalks and limbs are hardening.  In fact, the leaves are starting to fall

In the Winter, the leaves start to fall and are not replaced.  Flowerstalks become dry and bare.  The old trees slow down their activity.  The end of their season is coming, slowly at first, but relentlessly.  The last leaves fall from the trees; the last flowers die and fall.  No amount of care and assistance can stop that.  Eventually, a day comes when all activity ceases.  You face the sad truth that an end is coming in spite of all you do.

More tomorrow...

Thursday, March 21, 2013

Assisted Living Facilities

I researched local assisted living facilities and eliminated most of them as places Dad wouldn't like.  Some were for active seniors, lots of visits to the shopping malls and bingo games.  Others were holistic medications or foods Dad does not like.

I narrowed it down to 2.  The one I visited today was a very professional place.  The one I will visit tomorrow is a small group home.  The place today seems perfect.  A personal bedroom/bathroom and community TV rooms, dining rooms, activity rooms, etc.  Seriously good onsite health care, transport to local Dr of choice, individual meals at common eating areas, groups living/TV rooms.

Own rooms ranging from 2 in a space to 2 full bedroom apartments.  Friendly caring staff, medical assistants onsite 24/7, etc.  They can easily move Dad from assisted living to the dementia living area when the time comes.I think this is the place.

I saw the staff checking on the residents in the commom TV room area about how they were doing and did they want any snacks, etc.  The staff seemed pleased to be there.  No hulking guys to force anyone around.

Personal attention to meal preferences and not just for medical reasons.  If a resident prefers chicken and pork chops most meals, that's what they get.   Preffered snacks too.  Good medical staff, onsite barber, room-cleaning, laundry, etc included.

Plenty of friendly residents to sit and watch TV with...

Large enough so that there is generally a new place available each month, so no waiting list. and no fee for being on one.

They go by personal Dr intructions (resident's Drs, not staff Drs). individual for each resident.

I think it is perfect for Dad.  I will bring Dad to visit there next week.  They will even give him a free haircut and he will like THAT!

I still feel guilty just planning this.  Like I'm planning to kick him out of the house.  The Morningside House Manager said that was a normal feeling (and I do know that).  But it still feels like kicking him out.  I know, I know.  I'm doing the best I can for him.  He has reached the point where he needs more personal care than I can give, and that's the deciding point.

One nice thing is that the Morningside House is right next to the Safeway I shop at.    That means that I can visit Dad each week and then do my food shopping.  Sounds almost trivial, but having a reason to be RIGHT THERE each week sure makes it part of a routine to visit regularly.  And I can bring him treats from the Safeway.

I doubt that the smaller group house is going to impress me tomorrow.  But I will give them a fair visit.  It might have some advantages.  But I doubt it.

Tuesday, March 19, 2013

Oh Boy...

Dr appointment for Dad's finger today at 2:30 pm today.  Dentist at 8 am tomorrow.  I go tour one assisted living facility at 2:30 pm tomorrow and another at 2:30 the next day.  Its not going to be "happy days".

Daffodils, Trash, And Old Electronics

I finally got about 3/4 of the daffodils planted.  I have a front yard island bed surrounding the Saucer Magnolia tree and a 3' boulder ...