Is it ok to go home to die?

Is it ever ok to send someone home to die?

I have been struggling with this question off and on for months now.  My MIL is in stable health.  Her medication is again on track.  She is mentally present.  She is also terribly homesick.  Moving to IL was never her idea and honestly we always thought that she would return home when the summer arrived.  Well, summer is here and we are unsure what to do.

On one hand she is in decent health for her age.  She needs her medication and she needs to have a full-time caregiver but we could get both of these in Indiana.  However, since October she has been in the emergency room more than a half a dozen times including two hospital stays.  More than one doctor has told us that she cannot live alone. It sounds pretty cut and dry when you read the above.  Obviously, she needs to stay in assisted living.  The problem is her mental state.  MIL is starting to fail due to depression.  She is deeply unhappy everytime that I visit.  She talks of how much work there is to do at home and how little there is to do here... how bored and unhappy she is... how everyone is always telling her what to do... how much she misses home.

Sending her home is a death sentence.  No question about it.  I don't think she could survive even with a caregiver.  I'm worried that keeping her here is also a death sentence, so the question is, which is more humane?  Which is the best decision?

I have no idea.

The Matriarch

The Matriarch

Today it occurred to me that I may be the matriarch of my family.  Yep, the matriarch.  I may need a stiff shot of whiskey to handle this.  When my children were littler and struggling with attachment disorder they would work very hard to play my husband and I against each other.  Now, some of this is normal but AD means pushing everything past normal.  Fed up with this I told my children that I was 'the head of the family' that I fact 'I owned everything.  I own the house, the toys, the food, the children.  Everything!'.  My son, always searching for the crack in every bit of logic answered 'you don't own daddy'.  To which I replied, 'yes, I do.  I own everything in the world, including daddy.  I am the head of the family.'

Anyone reading this will recognize that I don't own the world and anyone who knows my husband will recogize that I don't own him.  We're an obnoxiously equal couple; however, my four year old son did not understand this and howled like the end of the world had arrived at our doorstep.  Fights from this point forward centered on me, the head of the family.  My husband was often (but not always) given a pass on the screaming and tantrums because the main push was to dethrone the head of the family, me.

Over time this proved to be one of the smartest things I have ever said to my kids.  When my son was smaller, he focused all of his rage on me.  It wasn't fun but as the mom I was going to get it anyway.  Taking some of it away from my husband gave my son someone to turn to when times were rough.  After all both he and daddy were under the thumb of a repressive dictator.  My daughter quietly examined all of these interactions and then one day announced that she too would be the head of her family.  I smiled.  Then I
explained to her that whatever parent stayed at home was the head of the family and that there were many responsibilities with the position.  She still thinks it's pretty cool.

But I believe I might have become 'The Matriarch' today.  This is not a position that I sought and frankly, I don't want it but it appears to be mine.  With the addition of my MIL to our little family I have stepped up.

Over the last several months I have taken over the bill paying for two households.  I am first point of contact for MIL's doctors.  I am recognized at our local ER.  I am also the one who has to solve the strange problems like... MIL accidently set her microwave on fire and I have to explain to her why she cannot have it back.  Or... the conversation with MIL on why she must take a shower. 

On the other hand, I think I get this title mostly because I don't want it.  When MIL told me that she didn't want to take her medication, I told her to discuss the issue with her doctor and I would back her up 100%.  This scared her (something I didn't foresee) and we haven't discussed it again.  With my son I explain to him that he is in charge of his asthma issues, his medication, his sensory problems.  My job is to help him and to teach him how to handle the problems.  My son has grown so much because I know he is old
enough and smart enough to handle this. 

I've come to realize that being The Matriarch is the easiest and hardest position in the world.  My job is to trust everyone to do their jobs while watching to see that no one drops the ball.  It's a lot of stress and a lot of worry and very little action on my part.

MIL Ill again

Tonight, I'd planned on telling you one of my funny stories.  Heaven knows that my family has a ton of them.  Instead, tonight I'm concerned about my MIL. 

A couple of months ago we went through a round of ER visits, hospital stays and general panic.  You see, when MIL goes to the ER, she usually stays in the hospital for a few days.  While this sounds good, it isn't.  In the hospital she gets very, very confused.  So confused that the first time this happened, we thought she must have had a stroke.  Luckily, not so.  However, she was not rational either.  She cannot distinguish between the assisted living facility and the hospital.  Between the ER and the assisted living facility, yes; but not between a hospital room and the assisted living apartment.

For the first hospital stay she was scared and angry.  Anger has been one of the hardest things for us to handle because it took us so long to realize that anger is just fear with a mask on.  That she really isn't trying to be difficult but she doesn't understand the situation.  We reassured her that no one had stolen her room and that no one had taken her things.  Luckily, she believed us.

Fast forward through several more trips to the ER in a very short amount of time.  The family started discussing a nursing home instead of the assisted living facility.  This was tough on all of us.  The idea was for MIL to get better,  not worse.  Luckily, the doctor happened to be at the AL facility during a new attack that would have sent MIL back to the ER yet again (and would have sealed her fate for the nursing home).  After seeing her exact difficulties the doctor was able to adjust her medications to get her condition back under control. 

Fantastic news, right?  Sort of.

The doctor warned us that we had reached 'the kitchen sink'.  Starting from that day he was giving her everything he could for her condition.  If (when?) she worsened again, there is no additional medication, no more rabbits from a hat.  Hmm.  Ok, not such good news. 

It's been somewhere between a month and six weeks since we received this diagnosis.  Everytime she has a bad day, I mentally hold my breath.  Each time, she has pulled through.  All is good.  Today, I'm not so certain.  I am again holding my breath.

This time MIL has two issues.  First is a wound that has gotten infected.  If you look at my MIL's legs harshly the skin will break so you can imagine what happens when she actually bumps into something.  The wound had been healing well for a few days but then it started to hurt and now the infection.  The doctor has put her on an antibodic which will hopefully clear this up.

In addition to the wound she is having breathing problems today.  Breathing problems are a double edged sword for MIL.  First, she is tired and does not want to take her nebulizer.  Second, she cannot breath when taking the nebulizer.  Huh?  See she is short of breath and the oxygen comes in through a tube under her nose.  She cannot breath better unless she takes a 20 minute breathing treatment through her mouth.  See the problem?  She needs every breath through her nose to maintain but must have the medicine through her mouth.  Today I managed to coax her into taking about half of her medicine, then I looked away to do something.  When I turned back she had dumped the rest on the floor.  Nebulizer over.

Since she takes the nebulizer several times a day I'm hopeful that the next one will be taken in full but just in case I notified the nurse on staff to have someone watch her take her medicine. 

Tonight I am worried about her but I have been worried, much more worried before.  Hopefully there will be no 2:00am phone call. 

Hopefully tomorrow she will be filled full of mischief again and driving me nuts.  I hope so.

MIL - again

November 11, 2010

It has been so many days since I've written. My MIL who recently moved to the area has not been doing well. On Friday, I was at her place for several hours because she was having a lot of difficulty breathing. We discussed going to the ER repeatedly but the doctor kept telling us that as long as her oxygen numbers were above a certain level that we should wait. For 6 hours we waited. Finally the medication took hold and her breathing eased. Everything was starting to look ok.

Saturday was the birthday party for my twins. I checked in frequently but my MIL continued to do ok.

Now, Monday. *sigh* At 8:30am I get a call from the Assisted Living place. “Are we taking MIL out? Is she going home on this day?” Why would she go home? “MIL has explained that she has to get home. She has many household things that need her attention.”

9:00am Monday. A call from MIL left on the answering machine. “I have to leave the Assisted Living place. (note the “have to”) Can you bring something for me to pack in? I'm planning to stay with you until you can take me home.”

9:45am Monday. I arrive at the A.L. After dropping my kids at school. I unpack her while explaining that she does not “have” to go home... but it's ok, she explains because she needs to go home anyway. Mmm, no. I reply, “ but you need to be healthy for more than 2 days before you can go home. Just Friday you asked to go to the ER because you were having problems.”

“I was having problems? I think your confused. I didn't ask to go to the ER!” At this point I stopped and looked at her... really, really looked and there was not a bit of guile in her face. She didn't remember the problems from Friday or the calls to the doctor or the decisions to go to the ER vs. not go. She didn't remember. Wow.

We've known for a bit now that my MIL suffers from mild dementia but nothing serious. Well, surprise, serious has just entered the building. With her breathing problems and difficulty maintaining her weight (she is too skinny) her dementia can spiral out of control in just a few seconds.

Moving forward to yesterday and today. Breathing problems come and go with MIL but progressed to pneumonia in one lung yesterday. Today, it took over the second lung. By 8:00am I was on the phone again talking to the A.L. place and leaving messages for the doctor. By 9:00am I was again thinking ER. By 10:00am medicine had kicked in and things were getting better.

By 11:00am, I was exhausted.

I would like to say that I have some words of wisdom. Something to share with others who might be in this same situation, but right now I am just getting through from day to day. I'm hopeful that tomorrow will not bring another 8:00am call. I'm hopeful that I can sit in my pj's and catch up on the laundry. Someday I will have the time to ponder how I've spent my life but right now I just want to drink my glass of wine and go to bed.

Ah, what will tomorrow bring?

The Mother In Law

Oct 26, 2010

The Mother In Law

From the title alone you might wonder what this post has to do with adoption or special needs children. It doesn't. Feel free to skip this blog if your not interested in the rest of our family dynamics.

My MIL moved to the area this past weekend. Well, moved might be too strong of a word. We have coerced her into a 'rehab facility', code word for assisted living. For the last 18 months the doctors have been telling her time and again that she cannot live alone. She has been informing us that she can live alone just fine. It's been a tough 18 months for all of us.

After each fall or each breathing attack (she is on oxygen 24 hrs a day) she would inform us all that she was fine, could take care of herself, did not need a caregiver, did not want meals on wheels, did not want anything. Then as her family we would sit back and watch her deteriorate over the next 6 - 8 weeks, waiting for the next fall or ER visit. Ask me how I spent every holiday last year? It was horrible.

This most recent fall was the worst. It entailed broken ribs, bruised knees and a banged up head. A friend took her to the ER where MIL insisted that she was fine and checked herself out that night. The next day she was back in the ER due to the pain. 6 weeks of rehab and she was ready to be released from the nursing home. Where would she go? Home, of course.

Not this time. We have told her that she has to do additional rehab and have brought her the 200 miles to be closer to us. Being sharp as a tack, she knows we're lying but is unsure what to do. In her mind she knows she can't live alone but she wants to so she resists staying. She has been here for 3 days. On day 2 she packed in the morning because 'aren't you taking me home today?'. We unpacked again. In the evening of day 2 she asked for trashbags to pack her belongings in because 'we're going home this weekend, right?'. No again. At the same time, she can't stand long enough to make a cup of coffee without a fear of falling down. While opening the fridge, she cut herself and bled terribly. Luckily, a nurse was at the facility.

For the last 18 months the family has known that MIL was a danger to herself and was consistently making poor health choices. Everything from refusing to have food delivered when she was not strong enough to cook herself to refusing to take her medication. We have run the gamut. During this time we have all looked for advice and help on how to get MIL to let us help or get her help. Never once did I find the answer 'force the issue, make her move'.

We did force the issue. We did make her move. We won't take her back. We also feel like dog crap for doing it. But interestingly, after we did this people have come out of the woodwork to tell us their own personal stories like this. How they had to force an aunt or father or other loved one into a nursing home or assisted living facility. Two and three years after the fact you can still see the hurt on their face and in their voice when they talk about the abuse heaped upon them for making their loved one get help.

So far, we're doing better than that but I'm sure the big guns will come out soon. I'm keeping my fingers crossed that I'll get the brunt of her anger because as the daughter-in-law she can't hurt me nearly as much as she can hurt her son. I hope that she settles in and likes where she is staying. I hope that I can use my cute children and cute dog to cut into her resistance. Only time will tell.