Life of a carer

Time for a pity party!

You know when you’re just tired? Just tired to the bone so that you can’t think straight and your motivation just dries up? You sit there knowing there are things to do and yet you don’t do them.  You just want to curl up in a corner and not exist any more… well at least not for a few hours or days or?  The responsibility of somebody else’s life weighs heavy. Mothers and fathers will know this.

Life beckons… I used to travel, I used to be able to go out to dinner, I used to be able to go out for a few hours without worrying, I used to go to work 5 days a week.  When you become a carer these things disappear.  Your life revolves around bowel movements, dressing, showering, medications, incontinence, doctors appointments, wound dressing, mental stimulation, reassurance, and trying to grant their every wish and desire.

You love them so much it hurts yet resentment crawls in.  My life has disappeared and I’ve now become a satellite which revolves around my Ma making sure her every need is met. But I’m burning out.  I know this.  Every time I lose my cool because of something; I know this. I never saw myself as a bad person in the past but those days are gone.  Every time I yell at her, I really yell at the disease called dementia.  The thing that will ultimately take her away from me if some other health issue doesn’t take her away first.  Every day I see small changes which take her further away from me.

For the last few days she has been fixated on scones and talks about making them.  She then asks questions about the stove and how long it take to heat up etc. Today scones called too loudly to her and she went into the kitchen with the purpose of making some. Knowing she can’t turn the oven on, has forgotten where all of the utensils and ingredients are kept AND that she’s never been able to make a decent scone, I go into the kitchen with her and make them while she looks through a recipe book.  I didn’t know what else to do.  I didn’t want her to realise she didn’t know where anything was and how to turn the stove on.  So I just did it.  What else do you do?

Of all the changes, I think the spatial displacement thing is the worst.  Night and day don’t exist in her world as we know it.  At 2pm in the afternoon she is saying it’s night time and that she needs to get ready for bed.  She comments on how dark the night is.  I can’t convince her otherwise.  The other day she left her bedroom with her book on ‘Cyril’ (her wheeled walker) and I asked her where she was going.  She told me to her room and turned around and went back in to her bedroom.  She will lose her bedroom and the toilet. Yet find them other times.  If I take her out driving locally she will not remember many places even though she has lived in the area for over 50 years.

I can cope well with the physical stuff but the mental stuff is a real challenges.  One that I’m not coping with well.  Carer’s of dementia sufferer’s have a set of ‘rules’ that I read periodically.  I think I break most of them every day.  “don’t say they’re wrong”, “don’t say remember” blah, blah, blah.  I know these rules are supposed to make our life easier but unfortunately they just make me feel more guilty when I break them!

Caring for somebody with dementia is a day to day thing.  It’s like riding a roller coaster. On some days or hours, you may have sane moments and others… well and that’s just me!

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Lessons learnt in respite care

As I’ve found out in the past, nursing homes are never going to deliver the same care that you do. Unfortunately this is something a caregiver has to accept, as hard as this is.  The reason why there is a couple of year’s gap between Ma’s stays in respite care is because of the bad experience she had the first time.  Hopefully with some preparation and preparedness your loved one’s stay in care will hopefully be uneventful.

These are some of the lessons I learnt and thing to be aware of from Ma’s couple of stays.

  • If you are going away while your loved one is in care make sure you allow a couple of days before going away to visit them and iron out any problems…
  • Make sure your loved one is having regular bowel movements. The staff assured me they logged (no pun intended) Ma’s bowel movements on computer.  Ma didn’t go for six days as they hadn’t written her up for a daily laxative even though I had informed them of her dosage and what she used.  Constipation can lead to confusion in the elderly so it’s important this is under control.
  • Make sure their teeth/dentures are being cleaned. I would usually wash Ma’s dentures when I visited her.  Ma said that the staff had only done this a couple of times (can’t prove or disapprove this because of Ma’s mental state) but she did came home with a sore mouth.
  • If they have an ulcer or any other medical condition that is usually seen to by a community nurse you will have to rely on nursing home staff to see it is dressed as you can’t access two services at the same time. Unfortunately on both occasions she’s been in care, her ulcer has suffered from not being adequately cared for.  Make sure you provide as much detail as possible on its care.  We had to provide her special silver dressing but wasn’t told this until the day she checked in.  Make sure you ask up front whether they require your loved one to supply their own dressings.  Take a photo of the ulcer so you have a comparison of how the wound is doing.
  • Ensure your loved one is being dried properly after their shower, especially under folds of skin. Ma suffers from chaffing under her breasts and stomach.  I asked them to ensure this was done and provided a zinc and castor oil cream to treat any sores.  When I got her home, I found red welts where they hadn’t dried her properly or used the cream.
  • Make sure they are getting their proper medications. Going into care you have to use the doctor the nursing home has.  This doctor may have a different idea on whether your loved one should be on the same medications.  Ma ended up having her pain medication cut by the doctor at the nursing home as he thought he knew better.  She spent a miserable time in pain.  If you don’t think they are getting the right medications ask to see the list and speak to the assigned doctor if you aren’t happy.
  • Make sure you keep copies of all the paperwork including the application form.
  • Make a list of questions you want to ask:
    • What does your loved one need to bring?
    • What does the nursing home provide eg. incontinence pads, dressings for wounds, Panadol (I must admit that I ended up giving Ma her own to take when she wanted as she wasn’t getting pain relief)
    • Can they bring alcohol (Ma so loves a brandy)?
  • Have a look in the room they will be staying in. Are there mirrors that could cause a problem, depending on their mental state?  Ma still wonders how the lady is going she shared the room with…
  • What can you bring to make your loved ones stay a bit more comfortable? Ma had her big numbered clock, pictures of her kitties and her kitty calendar (sigh, I didn’t get a look in) as well as books, magazines, and munchies (the food wasn’t very nice) AND of course her brandy.
  • I’m sure there are plenty of other considerations that I haven’t thought of… feel free to add.

Ma’s respite care diary…

…not the most exciting read in the world.

So, what to write?? I was going to condense all of the following into a shorter version and then I realised that it doesn’t give a full picture.  If you are needing to put your loved one into aged care you need to be on the ball.  I’ve been called a pedantic b*tch in the past because I like my i’s dotted and my t’s crossed… that’s just the way I am.  It’s my mother and I know that nobody will be able to care for her as good as I have but I need to know that somebody is going to care enough to try… So here you go… warts and all.

Day 2 – I see Ma and find out that she’s had a bad night, no surprises there.  Apparently she woke during the night asking for me and of course I wasn’t there.  She tells me that the nurses take too long to respond to her call.  Indeed I take her to the toilet as soon as I get there and a nurse comes in 20 minutes later to see what she wants.  I talk to the nurse again about Ma’s bowel habits and how to dress her leg ulcer.  I take Ma out into the courtyard for a breath of fresh air where she meets a couple of the ‘inmates’ and watches the BBQ lunch being cooked while having a brandy.  I ring that night to see how she has settled and mention her bowels again.  The nurses have a cordless phone they can take to Ma so we can talk but unfortunately the nurses can’t find it…  I never do get to talk to her on the phone during her stay.

Day 3 – Early visit this morning she had breakfast in her room which she didn’t eat.  I’m able to bring her a cappuccino in an insulated mug and she is very very happy.  She was waiting to go to the toilet after pressing her buzzer but all of the staff were busy collecting breakfast trays and didn’t have time to take her so I take her.  The aide comes in and wants to know whether I also want to dress her as well!  Ma has a ‘lady’ in the bathroom that copies everything she does.  If Ma lifts her hand, the lady lifts her hand.  I point out the mirror which Ma says she knows is there.  The mirror on the wardrobe door also shows a lady in the room… and even in her bed!  (Sigh, I knew it would be a problem).  Ma tells me that the lady wears the same clothing that she does AND she also has a stuffed toy kitty just like Ma!  Ma is frustrated and upset because nobody lets her move without assistance and when she presses the buzzer nobody comes.  She still hasn’t had a bowel movement and nobody is giving her the medication that we use to keep them going.  I mention this again to staff and ring again that night and tell the nurse.  The nurse says all the right things to me and I have hope in my heart.  But I should know better.

Day 4 – No poo – I talk to staff again about her bowels….

Day 5 – No poo

Day 6 – No poo – Repeated discussions I have with nursing staff fall on deaf ears although they respond nicely to my concerns…

Day 7 – Ma has poo but not the kind to get her excited… I text my sisters and boyfriend to tell them of the ‘arrival’… we have all been waiting for.  I ask to speak to a nurse…. Again.  Ma’s leg ulcer is leaking and I’m worried about her bowels and the lack of ‘movement’.  You talk to them and they agree with what you’re saying and then do their own thing.  Before Ma went into respite she was achieving a bowel movement every 1 to 2 days.  The nurse tells me that Ma wasn’t written up for a laxative every day… she acknowledges that my notes told them about the need for every day but still they didn’t do anything.  She tells me that they are now going to give her Movicol every day.  Not what I’ve been giving her or what I’ve supplied or what has been written up on her medication sheet attached to her doctor’s report.  I also ask the nurse about Ma’s ulcer and she informs me that they’ve changed the days the leg is being dressed on… and that they’ve ordered the stuff to do Ma’s leg with.  Deep breaths…

She speaks to Ma like a child saying in front of me ‘she really enjoys her meals, don’t you?’ Ma looks to one side and doesn’t respond to her.  She has already told me that there has only been a couple of good meals and the rest is inedible.  Sometimes the whole table doesn’t eat the food and they complain.  I can’t see that they get much if any fibre in their diet.  Ma says its tinned fruit with artificial cream. Ma doesn’t know anybody there and doesn’t feel like she ‘clicks’ with anybody that she’s met.  I go to take her outside and to get her hair cut but she doesn’t want to move in case my brother visits…. He doesn’t turn up.

Day 8 – No poo. I arrive to take Ma for her hair cut and find her still sitting at the lunch table along with the other ladies.  They are all staring at each other with no conversation.  I have brought Ma ice cream which she devours back in her room and then has a brandy.  She asks me every 5 minutes whether it’s time to go for her haircut.  My brother arrives just as we are leaving… great.  I’m sure we won’t see him again.  Ma is upset but leaves to get her hair done.

Day 9 – No poo.  I could tell them that using the Movicol doesn’t work but what’s the point when they don’t listen?  Walked in to be handed a statement for her stay.  $1,627.24 for 34 days… she is only there for 19 days.  Deep breaths times two… When I ask administration they tell me that they always take the money out in advance and refund it later… Really? I wasn’t told this… of course.  She tells me that she can’t see the sense in it and that many people complain… really? SIGH, I just walk away.

Ma tells me she has spent most of the night in her chair as her back was hurt getting out of bed.  The night staff apparently found her sleeping there during the night and moved her into her bed.  Not sure of whether this is true but she is sitting in the chair when I arrive and a bit confused.  Apparently somebody turned a bus over in front of the facility.  She asks me to see whether the ‘old lady’ is still there.  The ‘old lady’ has been absent since I moved the opaque door forward of the mirrored door.

Day 10 – No poo.  I decide to give Ma her own ‘movement’ medicine – two lower bowel stimulants and one Coloxyl with senna.  Ma’s leg ulcer is leaking and is looking very messy. SIGH

Day 11 – We have poo!  Arrived to find Ma has had a movement and is sitting on bed looking very pleased with herself.  She said she couldn’t get help so cleaned herself up mostly before help arrived.  There is poo all over toilet and basin and poo on her quilt.  How anybody could not see it and walk away is beyond me.  I’m very very angry.  I clean the bathroom and ask the aide where I can get another quilt for Ma’s bed.  I’m given a bag to dispose of the other quilt and after requesting a quilt twice from two different staff members, I leave.  My brother-in-law succeeds in getting her a quilt when he visits in the evening.

Ma tells me that she had soup for dinner the night before with no bread and she asks for some as she is still hungry.  She tells me she doesn’t like it there at all and that some of the staff get angry with her when she needs to go to the toilet during the night.  I can get up with Ma three and four times a night.  She can’t help it, how dare they get angry with her because she needs to go to the toilet.  She had the same problem in hospital.

Day 12 – I arrive to find her trying to get her heavy dressing gown off as she’s too hot.  She has been pressing the buzzer but nobody has arrived.  I take it off and dress her for the day.  The aide arrives and gets very defensive explaining herself.  Ma tells me she’s pooed again as she took more stimulants last night.  Nurse came to ask about Ma’s bowel movements and I had to bite my tongue as they reckon the Movicol is working!

I notice her dressing is leaking and her leg is very swollen.  The aide comes to take Ma to lunch at 11:45 and says she will be back in 5 minutes, 25 minutes later and we are still waiting and press the buzzer for somebody to take her to dinner.  When the aide finally arrives I tell them about Ma’s leg.  I check later and find that the dressing has been re-done… my sister was informed as soon as she walked through the door… oops I’ve seemed to have made my presence felt!

Day 13 – I’m going to work for five days this week!!!  It’s the first time since I can’t remember when.  I don’t shut up all day.  It’s like I’ve been let out of a cage… there is some normalcy which I haven’t experienced for a long time.  I don’t visit today… I feel incredibly guilty but my nephew is visiting along with my sister…. I decide I need to stay away.  It doesn’t stop me sitting and worrying.

Day 14 – I visit after work.  Ma is sitting on the bed half asleep slumped to one side.  She tells me what a horrible time she is having.  She says she is ‘leaking’ more than usual and that she’s very sore and that her ulcer has been throbbing.  I notice that her leg is looking quite swollen although not red.  She tells me again how horrible the food is and that there were sirens going all night and she’s being walking the corridors.  The tv show, ‘The Farmer Wants a Wife’ apparently turned into guns and shooting…. So she doesn’t what to ever watch it again.  I notice she hasn’t got her slippers on (the floors are very slippery… go figure in a new aged care facility) and she tells me that her feet have been sore.  As I go to put her slippers on I see she has a blister on her toe and ask if she can have a band aid.  The aide tells me she will tell the nurse… Ma tells me that the nursing staff keep asking her when she will be leaving…

The gradual disappearance of Ma

Today I placed Ma in respite care for three weeks.  I walked out of the facility bawling my eyes out, feeling like a failure and that I’d let Ma down.

I no longer like the person I’ve become.  I don’t recognise myself.  I’m a cranky, horrible person with a short fuse and I can’t seem to stop being like that.  It’s like I’m standing outside of myself watching myself having a breakdown while telling myself to stop… but I don’t.  I’m mean to Ma and have lost the patience I once had.

I look over the last twelve months and look at the parts of my Ma that I have lost.  The thing about Ma’s ‘diminishment’ is that it is a gradual insidious thing that you don’t really notice until you look back.  When I look back and compare the then with the now it breaks my heart.

Ma used to love reading Mills and Boons.  The house is choc a block full of them.  Over the years I’ve picked them up from fetes and bought her new ones each month.  She collected books by her favourite authors.  Now she no longer reads them.  Not even her favourites.  She now reads and re-reads and re-reads her complete collection of Kerry Greenwood books.  She fixates on them, counts them, hides them and writes in them, then tells you it’s a new book she hasn’t read before.  I’m not sure how much she even takes in.  She will sit for hours pouring over the pages of her books.

Ma can no longer turn the stove on or make herself a hot drink.  She can’t prepare herself food.  The other morning I found her eating chocolate because she had no other food and didn’t know the way to the kitchen (I prepare all her food and mostly serve it in her bedroom). She still insists on telling me she doesn’t like chocolate…

Her tastes have changed… for the last few years she has told me she doesn’t like spaghetti (her recipe) so I’ve only made it for myself.  In the last few months spaghetti and pizza are two of her favourites.  Dessert is still top of her list… that hasn’t changed!

We have gone from small ‘drip tray’ incontinence pads to the heavy duty pull-up pants that she wears day and night.  I look back at her transition into the pull-up pants and remember how frustrating it was finding the right product.

Bowel accidents are not uncommon.  I’m now so anal about her bowels (sorry) it must drive her to distraction.  It’s a fine line getting it right.  Anything over two days and her confusion and hallucinations start to increase and her stomach distends to epic proportions.  Her bowel also starts pressing on her bladder which means we’re up 4 times or more a night and she leaks like a sieve.

We now live with Ma’s ‘friends’.  I made Lammos (Lammingtons) for Australia Day and put her in charge of coconut covering.  When she came out for dinner she noticed that none of the Lammos had been eaten and said, “Didn’t anybody like my Lammingtons?”  As there is only the two of us in the house most of the time it’s always interesting when ‘the others’ make an appearance… or won’t eat my Lammos!

Her strength and walking has deteriorated so that she barely shuffles along on her walker. I now allow 20 minutes to get her out the door and down the stairs into the car.  She is so hunched over it’s like she is bent double.  Most days she doesn’t get dressed preferring to stay in her nightdress and dressing gown.

She finds it difficult to make decisions over what to wear or eat.  She just lets problems slide.  It’s like she’s in a bubble where nothing can penetrate.

Ma used to be able to find her way around the house.  Her bedroom was, her bedroom.  It’s now somebody else’s bedroom.  The house doesn’t belong to her, nor does her clock radio.  The house she has lived in for over 50 years is the house she has only been in for a few weeks.  The town is unfamiliar and her sense of direction has disappeared.

People are starting to slip from her memory, especially those she doesn’t see very often.  It’s sad having to explain who her granddaughters are.  Memories are eroding and being replaced with different ones.  Her new reality of being nearly drowned and burnt during her last stay in hospital in September stays with her even now.

I think part of my anger is over the loss for the Ma I once had.  I’m losing her slowly but surely.  Our relationship has been changed forever.  I hate being strong when all I want is my Ma to make everything alright.

You are not alone…

Sometimes you’re not as alone as you think you are.  During my time being Ma’s carer I’ve felt very much alone.  Each battle I’ve fought, either over her health or bureaucracy, has led me to believe I’m very much on my own.

Enter the Memory People (MP).

I discovered this closed group on Facebook after reading about them on somebody’s blog.

MP are an Alzheimer’s/dementia and memory impairment support group, with members who are patients, caregivers, family members, healthcare providers, and those who have lose their loved ones.  Rick Phelps founded MP after being diagnosed with Early Onset Alzheimer’s Disease in June 2010, at just the age of 57.

He realised there was a need for support for all those caught in the hell that dementia is, and created MP to be a place where people could share their stories and walk the journey together.  Rick’s Assistant and Executive Director of MP, Leeanne, works with Rick to support members of MP and on projects to bring awareness to dementia.  New members are made to feel welcome and encouraged to share their story.  MP is a large group (around 13,000 from around the world) but they treat you like family.  People share their stories and find support, helpful information, and most of all, you are made to feel you aren’t alone as you struggle along the journey of dementia.  They understand, care and will walk with you, each step of the way.

There is much love and understanding from MP.  They don’t talk about false hopes or miracle cures, they focus on the reality, and helping each other through each day.

When I joined MP I was greeted with open arms and made to feel so very welcome.  I read through people’s many posts and learned that there are still people out there that care.  My first post was to ask advice on Ma’s aversion to her bed. I received many responses of support and advice.  When I placed a photo of Ma holding her great grandchild I received, at last count, 260 likes along with around 30 lovely comments.

Some people’s stories are heart rending and not a day goes by without the report of the loss of another loved one to the dreaded disease called dementia.  This disease robs us of our loved one twice; once when they forget who we are and second when the disease finally claims them.

MP is a closed group, but welcome to anyone.  If you are in need of support, join us today. https://www.facebook.com/groups/180666768616259/

Having a wallow in Self Pity Street

The fight over Ma’s bed continues.  So far I’ve managed to convince her to sleep in her bed although it’s been a battle that I’m so tired of fighting.  Last night she was going to sleep in her electric recliner chair until she found it was ‘closed off’. Nothing was actually wrong with it… she just thought that it was.  Next thing we move into her bedroom so I can put her pants on and it’s all I can do to get her to hold onto the rail so I can put them on.

While I exit the room to clean up after her shower she decides she’ll sleep in the chair in her bedroom.  I come back to find she’s got her head on the window sill on a pillow and a rug over her knees.  This was after I promised her I’d sleep in her bed with her again.  I turn her television on in the hopes it will lure her out of the chair and start making conversation about what’s on and playing up to La la and Colonel (the cats).  Her show starts and I ask her whether she wants to watch it.  Finally she makes the transition to the bed and we watch her show together.  After I turn the television off she tells me she’s off to bed and starts to get up!    Aaargh!! I finally convince her to stay put and we settle down for the night… or try to.  It’s hot and it’s crowded and my back is aching and I’m seething with frustration.  I was sure it was going to be the longest night in the history of mankind.

This morning I couldn’t wait to get out of bed.  I’m so tired I feel like a zombie without the flesh eating part.  It’s all I can do to be civil to her.  She is cheerful and eats her breakfast which I serve in her bedroom!  She told me she’d stay in her bedroom if she had a smaller bed so I carry the single bed up from the garage a piece at a time.  Heaving the mattress up the stairs was interesting and I was sweating like a pig by the end of it all.  I finally lug it through the front door and Ma says to me, “can I help you with that?”  If I wasn’t so dratted down and out I’d cry.  The respite lady arrives at this stage and after washing the dust of me I leave for my hour out.

Some days I can’t wait for her to go into care so that I can breathe, so I can go out for two hours and not worry about whether she’ll be ok.  I’m tired of watching the clock every minute I’m out to make sure I don’t leave her alone for too long.  I’m tired of being called a liar and a thief when she enters physcho mode.  I’m tired of not being able to go to work and interact with people and have conversations and think about things other then bowel movements and medications.  I want to go to bed at night and sleep right through without getting up.  Then the guilt hits me.  I feel guilty for wanting to escape and wanting my life back and I feel guilty about giving up and placing her in care.

I miss friends I thought I had but didn’t and am grateful for the acquaintenances I had that are now friends.  I’m grateful I have this time with Ma and pity those who are missing out on this time with her.  I’m a lucky carer, my Ma knows me; her memory, although a wee bit dodgy at times, is still pretty good for 88 years of age.

Time I erected the bed in her new bedroom aka the lounge room….

Being a carer makes it easier to be taken advantage of…

Why do I get the feeling that because I’m Ma’s carer and fit my whole life around her wants and needs that people, aka service providers, want to take advantage of that?

I have had a couple of ‘run ins’ with Ma’s community nurses over the last few months all stemming from a complaint I made as I didn’t like that the assigned nurse wasn’t following the protocol set down by the Ulcer Clinic.  I used to come home from work to find her dressing was too tight which I re-bandaged.  As Ma has had her ulcer for over three year’s now I’ve learnt to be proactive about its care.  Too often we have had it go ‘pear shaped’ due to changes in her dressing made by a nurse who thinks she knows better then the experts.  (Nurses don’t have the authority to access the ‘golden dressings’ that doctors or podiatrists do so you can get locked into a never ending situation of inadequate dressings.)

The last straw was when I returned home from work to find the nurse had helped herself to a bag on the table which I had some items in so, she could use the bag for the dirty dressings.  My stuff was dumped on the table!  Really? Would you walk into somebody’s house and help yourself to somebody’s things? What was in the bag wasn’t important, the fact that she had helped herself, was.   I rang and asked the ‘boss’ to have her removed, I even said I was happy to take over her dressing changes.  In the past the nurses have always asked me to do her dressing if there is a public holiday or they are too busy.  They have never shown me how to do her dressing.  So, after my complaint and questioning of the nurse’s conduct the ‘boss’ turns from being ‘you need to tell me what’s going on’ to ‘oh no, you must be mistaken’ and ‘I find that very hard to believe’… in other words calling me a liar!  I offered to take over her leg completely but was then asked if I was cancelling the service!!!  The service continued and hey presto the nurse started following the protocol set down by the Ulcer Clinic and deferring to me when she wanted to make a change (roll of eyes).

So, now that I’m at home nearly full-time I was asked to do her leg last Friday because they were busy.  I’m now asked to do Monday because it’s a Public Holiday and now they also want me to do Wednesday because they are sooooo busy!!!  Really? Why is it my problem?  I did do Ma’s leg on the Wednesday because I find it improves when I do it as I find the care the nurses take is ‘slap happy’ at best.  It wasn’t always like this.  The good nurses we had have all left due to changes…

Public holidays mean care is only provided to people without anybody.  That’s by respite as well as community nurses and Ma’s 1.5 hours of house work she gets per fortnight.

Ma was allowed home from the hospital because I was there to look after her yet I get no extra help or assistance.

I keep getting told that I need to look after myself; that I’m important too.  If I’m so dratted important, why can’t I get more assistance?  Carer’s Week is coming up, there are pamper days and BBQs etc for carers being held.  How does a carer get the time off to go to these things? I want to cover the grey on my head and get my purple streaks back but that needs 3 hours! God bless my hairdresser who gave me a mineral powder that covers my grey, for free I might add, delivered through my sister.  Seeing the grey in the mirror and the lack of purple was enough to put me into a ‘funk’.

I’m very grateful I’ve been able to access 4 hours emergency in-house respite for 5 weeks so I can go to work for a few hours.  Why is it so hard?  Why do I feel like I don’t matter or Ma doesn’t matter?  Some days I just want to say ENOUGH! But, I can’t…  and so we continue…