Feeling guilty

Lately I've been very tired.  I'm tired of not ever getting a full nights sleep and always being on call.  Why do I do this?  I've been wondering if it's guilt.  Guilt of being able to walk, to brush my teeth or take a shower or just get in the car. 
Perhaps the guilt extends to wanting a life that is somewhat normal.   I've had to ask myself what would happen if I gave up being a caregiver.   How would my husband's family cope with that.  How would my husband cope with that. 
I remember the day we sat on the edge of the bed and tried to wrap our heads around the fact that my husband had just been diagnosed with MS.  I thought...we can get through this.   I never believed it would get to the point where he could not walk, stand or sit up.  I don't think he did either although we had heard of people with MS.   It's not something you get through.   It just keeps getting harder and harder to cope with.   The summer of 09 he could transfer into the car and we spent many afternoons just cruising around the countryside.  This summer getting into the wheelchair van was was a several hour ordeal.  He can't sit beside me anymore to talk.  The feelings of guilt are building.

A typical day

I've been battling a cough for 2 weeks now.  It leaves me drained.  I think my immune system went down after the trip to Mexico. 
Well yesterday was Michael's first dentist visit.  It went really well.  He must have had some coaching from school because when we got there he told me I would have to wait in the hall for him.  I was expecting him to want to hold my hand.  It was a pleasant surprise.  He came out all smiles and showing off his clean teeth.
Did I say we got a cat on the weekend.  He is cute. He slept on Michael's bed last night and that kept Mike in his own room.  We've been battling the sleep thing for a year now.  Mike wants to sleep in the middle.  Now that Brad is in a hosp. bed I only have a twin bed beside his.  There is not enough room for both Mike and me.  I can't carry him back to his room after he falls asleep as he instantly wakes up.  It's been a problem for ages.  I don't get a good night's sleep ever.  I'm hoping if the cat sleeps with him he'll reclaim his own room.
Today we are taking Brad out for a visit with a friend he has only spoke to on the phone.  She has also had the Liberation treatment and it will be a good outing for him.  Getting him ready to go out takes a great deal of planning.  He needs to get up, washed and do his morning stuff.  Then dressing and into the wheelchair.  Sometimes that tires him out before we set off.   We are usually always late for everything.   Here's hoping we make it on time today.

Needing a rest

Yesterday I went for a colonoscopy.  Now most people would dread the idea but having been there, done that I only thought of the rest it was going to give me when I went under the tranquil sleep. Funny but instead of feeling groggy when I woke up I was actually refreshed.
Today Micheal, our son and I are going to get a new kitten.   Kids living with a parent of MS have special challenges.  Michael is ADHD and needs a lot of attention.   I may be crazy thinking of getting a cat but I'm really hoping the cat will wear off some of the ubundant energy Mike has.  We tried a puppy once but he bit at Brad's ankles so much and Brad could not move away as his legs and feet were starting to lose the ability to move.  We finally had to find a new home for  the puppy. 

My first post

This blog is really for me as a place to vent or express myself.  A caregivers life can be very lonely.  I've been a caregiver for about 7 years now.  At first I was helping my sister stay at home.  She wanted to die in her own house and I made it so.  She passed away on Nov. 17, 2007.  Very shortly after that my husband was diagnosed with primary progressive MS.   I had already left my part time job to care for my sister and help take care of her 2 year old adopted son.  Now I cared for the baby full time and started caring for my husband.  I had no time to take a break.   On top of that we were really struggling financially.   It took us another year before we could get set up with a disability pension for my husband.   I had to find a way to earn money while staying at home.  I started a website and got busy sewing.  Before long I was buried under a backlog of orders that I couldn't fill.  It just seemed the harder I tried the further I got behind.   All of a sudden I felt like everything was falling on my shoulders from changing light bulbs to making sure the taxes were paid.  There were times I felt like hiding or just running away.  Each time those feelings came over me I would lean on food for comfort or  perhaps I just stared into space. 
We did get some help in the form of live in nannies.   I thought that would be my saving grace.  Not so.  We went for quite a while on our own until one time when my husband landed in the hospital and I nearly had a nervous breakdown.  It was then that we were advised that we had to have help or he would have to stay in a nursing home.   Luck was on our side when we contacted the Red Cross and they did have someone willing to drive to our house.  We don't live in a city so it's hard to get help around here. 

A few weeks ago my husband and I traveled to Mexico where he underwent the Liberation treatment.   At this time he could not walk  or stand or barely hold himself up while sitting.   The trip terrified me   We did make it there and back and I guess my blog will continue from his journey of healing and my journey of caring.