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!!!!!