To Guilt or Not to Guilt

Guilt is a funny thing.  It can eat you alive if you let it.  I have always had a problem with guilt.  Usually it is over something I really don’t have any control of, but yet I still feel guilty about it happening the way it did.  With putting Mother in a nursing home, I am still undecided if I should feel guilty or not.

Have you ever wondered just how selfish you really are?  Like most with MS and Crohn’s Disease, there are so many things I can no longer do, or at least do in an acceptable manner.  I have terrible guilt over these things even though it is not my fault. 

Per Psychology Today: “Guilt and its handmaiden, shame, can paralyze––or catalyze one into action. Appropriate guilt can function as social glue, spurring one to make reparations for wrongs. Excessive rumination about one's failures, however, is a surefire recipe for resentment and depression.”

I wonder how much of most MS patients depression comes from guilt.  Many of us feel guilt because we can no longer work, take care of our families, handle the daily functions of running a home, playing and other activies that most people accomplish with no problem.  Watching others do jobs that we can no longer do can often bring on a bout of depression.  I know that it has with me many times.  I watch my husband do household chores that I used to do and it really puts me into a sad, depressive mood.  I feel so ashamed that I can no longer do these things and it is an added burden on him to do.  Although he tells me over and over that he does not mind doing these things, it still hurts me that I cannot do them myself.

Coming to the conclusion that I could no longer handle caring for Mother has been a major trigger for a period of depression for me.  Most of the time she did not feel that she needed to go and it made it even harder for me to stick with this decision.  Deep in my heart I know it is for the best.  Her safety and daily care were not up to par in our opinion and a change had to be made.

So now I sit here with my guilt.  Ten years is a long time to have someone else control your life.  It  has been hard on both me and Howard.  I think it has probably been worse on Howard because he was “in control” at his workplace for over 36 years.  Giving in to a woman who wanted to dominate not only our everyday life but every aspect of our lives went against his grain totally.  Most men are  ingrained with the need to take care of their families and make decisions in their best interests.  He had to suppress this urge many times and I could see the strain it put on him.  Sometimes it would erupt out of him and he and Mother would have an “in-depth” discussion about it.

I know that some of my need for her to go to the nursing home was selfish.  Howard and I were really to the breaking point with wanting to run our own lives and being in control of what we do.  When you get our age it is not easy to let someone else tell you every little thing to do each day.  This was going to have to change before there was a big blow-up and things were said that were not really meant.

I also feel selfish/guilty about the fact, as I have mentioned, that I could no longer care for Mother the way she needed caring for.  She has become quite frail and dementia is setting in pretty quickly.  Since my brain cannot be relied on anymore to remember things and make valid decisions either, I felt she needed better care than I could give her.  She could not remember to take her medicine and do other normal activities of the day.  I often could not remember to get her to do these things either.

Physically I am not able to help hold her up and catch her when she stumbles.  This also was something that had to be considered in the decision to make sure she was better taken care of.

The list could go on and on, but this is the gist of why our decision was made.  I started this blog to get some of the thoughts running around in my head out and possibly offer some help, comfort and a little humor in other’s lives.  Today, I feel like I am writing a diary entry to get my emotions out and try to feel better.  I hope you don’t mind the rambling………..sometimes it really does help to share and get out things bottled up inside………..

Poster Child for Stress and MS

I am quite certain that I could have been a poster child for the effects of stress with MS the last couple of weeks.  Going through all the emotions, both ours and hers, of putting Mother in a rest home has caused a lot of problems with my MS.

I had three “spells” last week.  I guess some would call them seizures.  We don’t really know what to call them so spells seems like a good term.  During these times, I lose track of time and do not know what is going on around me.  In my mind it seems like I am bending backwards and that I am pulling so hard that my back will break.  Howard says that I am actually pulling forward almost into a ball and clenching my hands so tightly he cannot get them open.  It is quite painful and leaves me drained and sore when I come out of it.  These spells usually only last a few minutes, but it seems like hours to me.  Funny how the mind works.

Another thing I have had a problem with is crying.  I have written several blogs on PBA, but have never experienced it quite this severe before.  I have had crying spells before when nothing was happening to cry about.  These crying spells have awakened me many times.  But this week, I have been in an almost constant state of crying. 

I realized that this would be an emotional time.  As much as it was a relief for us to know that Mother would not be here but would be taken care of, it was still sad in many ways.  I know that a lot of my crying was mixed emotions about whether we were doing the right thing or not.  But crying while cleaning Hadji’s cage (our bird), using the bathroom, taking a shower, etc., just is not normal.  It is also frustrating to bust out crying while trying to have a conversation.

Howard thinks that a lot of my problems with crying and having spells were caused by all the stress we were under.  I agree.  Although for the 10 years we have been with Mother we stayed under a lot of stress and I often paid for it with MS complications, it was not this intense.  Stress is a really strong key to kick in MS problems.

There were several days during this transition that I was so fatigued I could barely put one foot in front of the other.  I was having a lot of problems with foot-drop on my right side.  Although I needed to be helping Mother sort and pack her things for the move, I was barely able to move myself and keep going.  I had to rest a lot during these times and felt very incompetent.

I am still feeling the after effects of the spells.  I feel like a Mac truck hit me and I am so very tired.  I am hoping that after a week or two of getting settled down and back to a routine it will get better.  I am sure that I will calm down in time.

Although my stress level has been over the top lately and my MS is trying its best to put me on my back, I am still thankful that Mother will be safe and looked after like she should be……………..and I can’t lie about it………….it will be nice to have a home of our own and do what we want to when we want to…..after 10 years I don’t think that is asking too much………do you??!!!!

Long Week

The week of the 4^th of July was one of the longest I have ever been through.  It was the 10 year anniversary of our being caretakers for my Mother.  These years have been both a blessing and a curse for all of us.  But this year it is coming to an end.

After much thought, discussion and research, we have found the nursing home we think is the best for her to live.  It is 30 miles from here and where Mother grew up.  Her sister (who is blind) lives there and there are always people in and out, both residents and visitors, whom Mother knows.  It really seems like the best choice.

Unfortunately, after we had made this decision and started the process, Mother began to balk at the idea.  She went from being excited about the move, to crying and fussing about it.  It has been such an emotional roller coaster for all of us.  Since she has not ever been happy that I or anyone else can remember, we did not think that she would jump for joy over the prospect anyway.

Over the past few years she has been especially unhappy.  She was frightened if we went anywhere for any reason, thus she did not want us to leave the house.  She stayed in her room most of the time watching TV or napping.  When she had to go to the doctor, she used her walker and it was all she could do to make it from the car to the office.  She was getting very forgetful and constantly argued that she was not told things when we would mention something.  She also argued that she had told us things that she had not.  It made for a very uncomfortable situation most days.

Since I am her only child, she felt that I could not know what was right for her as much as she did.  I could not get her to do the things I would ask her to.  This included bathing, taking her medication correctly, acting nice around visitors and other such normal activities.  It was becoming so uncomfortable around our house that we rarely had company or invited people over.  Not only did we not want to hear some of the things she would say, but we did not want others to hear these things.

I have mentioned that she had shingles.  She seems to have lost her modesty since this has happened to her.  She has no problem with pulling her blouse up and showing the scars on her breasts and under her arm to anyone who is around.  This activity occurs around family, friends and strangers.  Since she does not wear a bra, this is quite embarrassing to us and the family. I cannot seem to make her understand that most people do not want to see her shingles and especially are not interested in seeing her breasts.  This point has not registered with her yet.

One of the main reasons we made this move is for her safety.  Since I no longer have the capacity to drive, my husband does all the errands.  I am, at best, wobbly and unsteady on my feet.  Leaving me to care for Mother, who is often more unstable than I am, is not safe for either of us.  When she holds onto me for support, it is kind of like “the blind leading the blind”.  We have gotten quite a few stares walking into places, me with my cane and her with her walker.  I am sure we look like quite the pair.

If we live until Monday (July 8^th) and get her settled in the home, hopefully we will all be more at ease and able to function in a halfway normal manner.  The past few months have been a nightmare and this 4^th of July week has been the ultimate nightmare.  We are hoping and praying that this move will be a blessing for all of us.

Keep us in your prayers please!!!!!

Thoughts in Poem-Style

I try not to whine

But I know that I do

When unable to do things

I want to pursue.

I want to tell others

How MS can be

Tell friends and tell family

That I rarely can see.

I try to share knowledge

Of things I have learned

To let others know

How often we’re spurned.

Being out in the public

Takes plenty of nerve

For most that we meet

Are both cold and reserved.

Most don’t want to know us

We are different than they

They just turn and ignore us

They don’t know what to say.

Most of us do learn

Many people aren't really mean

They just don’t know how to handle

Something they rarely have seen.

Then there are the others

Who smile and say hi

Who offer their friendship

Not just walk on by.

For these I am grateful

They truly are blessed

They are unique in their being

Set apart from the rest.

I guess sometimes I want

All the world to see

That we are really no different

Than others can be.

We live and we love

We are happy and sad

We are hard and we’re gentle

We are good and we’re bad.

So please when you see us

Don’t pretend we’re not there

We have friendship to offer

And happiness to share.

 

Missing Things

Funny how much you can miss something.

Over the years, I have come to miss my brain.  One of my biggest joys at one time was being presented a problem and search to find the solution.  The joy was not in the solution but in the search.  Research, exploration and testing were things I enjoyed and things I was good at doing.  Finding solutions to problems was something I was very proud of being able to do.  I fear more and more each day that I am no longer a person with that ability.

I am also missing more and more of my physical abilities.  At one time in my life, I worked two jobs with no problem.  At another time I often worked up to eighteen hours a day without missing a beat.  When I was awake I was able to go as long as I needed to.  When I was asleep I would rest and wake refreshed.  Now, sleep is hard to come by and when I do sleep, it does not give me the rest I need.  My energy level is minimal at best.

Reading has been one of my passions since I first learned how to read.  I have spent countless hours losing myself in the wonders of the printed page.  There are few things that bring me the peace and contentment that reading a good book does.  I am slowly but surely losing my eyesight.  My eyes get so tired from trying to read through blurry eyes.  I rarely try to read very much now.

It is so easy to get discouraged from all the things MS is robbing from me.  I recently had another.  The bones that hold my teeth in my mouth are deteriorating. Although I have had several root canals and crowns, the part of the tooth that they are attached to are beginning to let go and become decayed.  I lost two jaw teeth some time ago.  I adjusted to that and it was not noticeable that they were gone.  When I lost one of my front teeth, I knew something would have to be done about this.

I don’t think I have had too much trouble adjusting to change over the years.  As each year has passed since MS began to take over my life, I have had to make changes from my normal routine.  This tooth problem was just another such change.  My dentist suggested I have these tooth bases pulled and for me to get fitted for a partial.  After some consideration my husband and I agreed that this seemed like the best solution to the problem.  The teeth were pulled and the finished partial was put into my mouth.

It is really strange to have something in my mouth besides teeth and a tongue.  This foreign object takes some getting used to.  I think I am doing pretty well with this newest part of my mouth.  I am eating most foods and learning the fine art of brushing “my” teeth as well as my adopted teeth.  All in all it has worked out well so far.

I still miss a lot of things that I once had the use of and took for granted.  I hope I am adjusting to this and not whining and complaining too much.  After all, most changes are supposed to be good.  Living our lives in the past and crying for our losses only makes us miss all the joys of our lives in the present.  And, with my newest adjustment, it is so much nicer to smile without a gap showing where a tooth should be!

 

Times of Mush

I looked at a blank page this morning.  I had not written anything and had nothing in my head that seemed like it would be interesting to anyone.  There are a lot of thoughts drifting around in my brain, but none of them seem to stick together and form an idea. 

Some days are like that.  Random thoughts flying around with no purpose and no hope of giving me any type of direction.  It reminds me of games where you see how many words you can make out of a bunch of letters.  The words are not in any one category and do not really fit together.  They are just words.  My brain is like that a lot of times…………countless words floating around with no rhyme or reason to their direction.

I call these moments “times of mush”.  It is at these times that I take it easy and try not to have to get into any type of project.  If I try to cook, clean or do a craft, I will not get it finished and end up with a mess.  My thoughts do not go from point A to point B and end up at point G without making any sense.  For instance: I may want to get a meal started.  I look in the freezer and see what meats I have.  I get one of them out.  I look in the pantry and get some things to go with that meat.  I set them on the kitchen counter.  I just stare at them.  The idea I had started with for a meal just drifted away and left me with a puzzle.  What are these objects doing on my counter and why did I put them there?

Cleaning may be the same way.  I get my cleaning materials out of the closet.  I organize them as to what purpose they serve.  When I go to start doing something, the little groups of things I have are just that……….little groups of things.  The idea of what to do with them has been erased from my brain and the little groups mean nothing.  After a while I just put them all back to wait for a time when what they mean will be clear to me.

I love to crochet and sew.  My husband just bought me a new sewing machine.  It is a little portable one since most of the sewing I do now are only simple things.  I took it out of the box the other day and began to get it ready to start sewing.  I threaded the machine down to the needle and wound a bobbin of the thread I wanted to use.  I got my material and started the machine.  It only made a jumbled mess.  I rethreaded the machine a half dozen times.  I still had a jumbled mess when trying to sew.  There is a disc that came with the machine.  I put it in the computer and started watching it.  I had threaded the machine wrong.  When I rethreaded it again, it worked.  It was very discouraging.  I used to make most of my children’s clothes.  I also made some of my own clothes.  Now, I am lucky to be able to sew a hem that has come loose.

People will often call and ask what I have been doing lately.  I hate to keep saying “nothing”, but for the most part it is the right answer.  Some days I do very little……not because I don’t want to do something, but because I can’t think it out to get it done.  I have some days that I feel fairly well physically, but my mental state is a disaster.  Most people do not understand that so I don’t try to explain it to them.

In some ways our mental state is more important than our physical one.  Although being unable physically to do things is a terrible place to be, being unable to do things mentally is worse to me.  There are many things I can no longer do because of my deteriorating physical abilities.  There are more things I can no longer do because of my deteriorating mental abilities.  There are many times I cannot write this blog because I can’t put enough words together to make a logical sentence.  I try to push through these times but often it just will not work.  On those days, I just forget writing and feel sorry for myself.

I remember all the times I have heard the phrase “A brain is a terrible thing to waste”.  Boy if they only knew!!

 

Young and Old

My cousin and I were talking the other day about some of our aches and pains.  One of the things we agreed on was restless legs and pins and needles in our feet.  It is getting really sad when one spends at least part of any conversation discussing health problems.

Another thing we agreed on was the fact that even though our bodies were aging and aching, our brains wanted to stay young and were constantly on the outlook for new ideas and things to do.  She is around young people more often than I am so she knows the “in” stuff and people more than I do.  And, I reminded her that on any given day, MS can override my brain and turn it to mush for a length of time.

My husband loves westerns. Old ones, new ones and any other type of western.  He spends most afternoons watching them on the western channel.  I don’t mind.  Some of them I like and when there is one on I don’t, I mess around on the computer, cook or do other little odd jobs.  One of the kinds I don’t like are the really, really old ones.  I just can’t seem to get into them.

It is funny, but the older I get, the more I like modern things.  I used to love to write letters and mail them.  Now, it would be quite a chore to do so.  Many days I can’t hold a pen to write with.  Other days I can hold the pen but it won’t go where I am trying to tell it to.  I would hate to be the recipient of a letter I would write on one of these days.  An email is much easier and the response is so much faster.  I do, however, have some friends I write (type) letters to and correspond with through the postal service.  It is very frustrating to me after having an instant email response.

I also prefer email to using the telephone.  It may be a pride thing, but I hate to try and talk with someone when my thoughts won’t come together and my mouth won’t form words of any known language.  That, too, is very frustrating.

I have decided I am getting old……….or at least becoming one of the older generation.  I say this for several reasons, most of which I will not put in this post.  I have a short list of some to share, though:

(1)    I must be old because I cannot make myself get through the first five minutes of Magic Mike much less watch the whole thing. 

(2)    Going out to the movies seems so unnecessary when the movie will either be on HBO or disk in a few weeks.

(3)    I am satisfied with snacks for meals and don’t need a meat, veggies, salad and dessert to think I have eaten. (Meals are a hassle to figure out with Crohn’s)

(4)    Being near a bathroom when I venture from the house is more important than seeing everything in the store.  (This can also be applied to MS)

(5)    Being at home is a treat rather than a punishment.

Some things my inner self still loves even though I am getting older:

(1)    Loud music.  (It isn’t good if it isn’t loud)

(2)    Crazy clothes.  I can’t seem to make myself shop in the women’s section.  I tend to lean towards the younger styles.  I also like off-beat types of clothes.

(3)    Trying new foods.  When I was young I knew what I wanted to eat and rarely ventured out of the box.  Now I love trying new foods and learning more about how to prepare meals.

(4)    Playing games.  I was an only child in a neighborhood of few children and most were boys.  I learned to play by myself a lot with “pretend” being the main one.  Now there is a whole world of games to play on the interest.  (Big Fish is one of my dearest friends!)

There are many more, but you get the picture.  I guess we all are a mixture of young and old.  I hope that all of us stay more in the young category rather than the old.  One of the sayings when I was young was “don’t trust anyone over 30”.  Can we move that !along to at least 80?!