Hi Serena,

Maybe you are.

Maybe you are exhausted and really need some more time when you are not moving here or there.

It is always a difficult call finding the comfortable zone between what one wants, what others expect and what one can deliver.

And that would be rough if the only burden being carried were physical.  You have an emotional burden to carry also.

Human beings cannot go on and on and on forever.  We need time where we rest.

So, if you can get some rest take it.

The last thing your family needs at present is dealing with the results of you having a fatigue related accident.

Grace and peace to you.

John

Serena, you can only do what you can do.  Maybe you could alternate, 1 day one week and 2 days the next.  I don't think that it is being selfish.  Maybe if you were out partying every night it could be considered selfish, but you're not, you've just reached the end of your stamina.  If you get so exausted that you make yourself sick you won't be any use to anyone.

My family would not be dealing with me having a fatigue related accident.   I would be sitting in the hospital alone.  They are spent visiting my mother.   Nobody would be there to take care of my pets if I was hospitilized.  Nobody would take care of my house and tenants and payments.  I have not worked long enough at my job to get paid time off.  It would be me dealing with the results.  I guess that it is hard to imagine that things could get worse but they could.

I view things differently.  I see that my sister has a husband to share the driving with.  She has grown children who can help her with the driving as well.  (either to drive or keep her awake)  Her husband can share the meal preparation, housework, taking care of pets, and bill payments.  (and he does) I have to do everything by myself so I think that she has more time than me.  I also see that she has a husband to listen to her and help her carry this burden emotionally.  I don't have that so I think my energy is getting sapped.  I don't know if that actually helps maybe having a husband is more of a burden in times of crisis.  I do know that when my Dad died I spent hours talking to my mom about him and now I have no one to talk to.  But who knows if they talk.

Not that I am saying that my mother's hospitilization is easy on my sister.  I think that being single does not mean that I have less responsibilities.  In some ways it means that I have more.

 Your Halloween avitar is scary!!!!

Yeah I was thinking that I would go once next week and see if that makes me less tired.

I do feel guilty when I go to the movie with a friend or go out for supper.  But the movie and supper take 3 hours not 6 or 7.

I don't think you're selfish Serena. When a parent is sick, I know it's incredibly draining. You're a strong person.

Serena - no one can make the decision but yourself.  You know how much you have to give and when you are at the end of your rope.  But, please, whatever you decide - don't feel guilty.  You have been and are a dutiful daughter.

It is an unpleasant fact that often the rest of the family, and the world, expect the single person to carry the load.  You have a right to your own life.

This is so hard Serena.  It is natural that you feel overwhelmed and exhausted.  As things sit right now I think I'd look at doing physical visiitng once a week and stay in contact with the hospital by phone on the other days. 

The other thing I'd suggest thinking about is 'finding someone to listen to your worries' - some people use a minister, some a counsellor at the local Mental Health unit, others find a caring neighbor.  I have heard of people who have had others volunteer to help them with driving, or by supplying meals.  It hasn't ever happened for me - but you might get lucky.

Serena - I know how difficult it is to have an ill parent and that is  far away. I too felt guilty at times, but you can only do what you can do. Other times phone and talk to the nurses. They can tell you if her condition has changed. I think you are just worn out and need some time to rest! And don't feel guilty when you go out with friends because you need to relax and have someone to talk to.

Sorry to hear you're still struggling with this Serena ... it's a challenging issue for sure.   As others have said, I agree that it's important to find a balance between caring for your mom & caring for yourself.   And winter is coming, so driving will soon become more treacherous, which is something to consider.

It sounds like your mom is probably not conscious when you visit.  It's hard to sit & wonder if someone even knows you're present, and to not be able to have some conversation, especially when the journey has been so tiring for you.  Have you connected at all with the chaplain or social worker who is connected with the ICU?  They are usually really helpful in helping families sort out dilemmas such as you are facing.   It's the first time for you, but it is something they have dealt with many times ... their wisdom & experience can be quite comforting.

Serena, Carolla has made a good point.  The social worker or chaplain can also be another contact for you at the hospital if you have any concerns concerning your mother.

Hard choices indeed. But as others have said, you need to take care of yourself serena. I really feel for you with your mother such a distance away and you wishing you could be there more. You are dealing with so many things and your physical and emotional well-being are important considerations. Also, I wonder if talking to your sister about your feelings regarding visits to the hospital is possible for you. Thinking about you!

Thanks Kinst.

Yes.  I have found that my family thinks I don't have a like because I am single and not just in this area.   My sister forgets that I am only 5 years older than her oldest daughter who has been to the hospital 4 times in 4 months.

My sister is the contact person.  The hospital does not want two people phoning.

I have tried the minister.  The minister is too busy.   Literally no neighbours.  The houses on both sides of me are empty and even the houses two houses down are empty.  I am really alone on this street right now.  I have lived on this street since I was a teenager.  All the old neighbours have moved.  This is not the same neighbourhood that I grew up in.  Well geographically it is but the demographics have changed and like everything else in my life right now it has changed for the worse.  I will check into the counsellor tomorrow.

I have lost track of how many times I have driven to the city.   I went twice with my sister.  Once with a cousin and twice with a friend.  A few weeks ago I was going 3 times a week.  Because it is so far away people do not want to go because it requires them to either take a day off of work or stay out late and it seems silly to drive for 4.5 hours to have a one hour visit.

In the first month she was in the hospital people were bringing me food or inviting me over for supper.   But I think because the hospitalization has gone on for so long people have kind of forgotten. 

Perhaps you could do a rotate with your sis? You do two days one week, with her doing one day that same week and then switch the next. This way if things change, you are all more informed and you all know that mom has the love and support from family (physically) three days a week.

Don' t guilt yourself too much. You cannot be there for your mom if you have burnt yourself out!!! and know that she understands that people cannot be with her 24/7. I used to spend weeks at a time in the hospital. Yes sometimes it was lonely but even when my family was not there due to live, I knew that they were there in spirit and that some would be there 24/7 if they had the resources to.

Thinking about you......

This is tough Serena, and I know how pulled you feel.

You say your mom is on life support  and in Intensive care.  I gather that you and your sister live in the same town, that you have driven in with her twice.

I think you and your sister could sit down and hash out the routine a bit.  I would bet she is also finding it an emotional and physical drain as well.  She appears to be much older than you if she has a child just 5 yeears younger than you.  Maybe you can each go once a week for  a while to take a break .

Is your mom conscious?, you mention life support so I guess ICU.  Is there any chance she is going to improve?

I think you and your sister ( do you have other siblings?, I seem to recall a mention of a brother but I may be mixed up) should contact the hospital and ask for a team meeting with the family.  They will be willing to arrange for you to meet with the head nurse or team nurse, the doc, the resident, the RT person perhaps, the PT if one is doing therapy, a nurse in charge of placement/ paliative care and ask for the Chaplain too.

This is not an unusual thing to do and if you haven't had it in 4 months you should have.  It is an opportunity to lay cards on the table.

Get a story from them about where your mom is, what the prognosis is, what they are attempting to accomplish, where they can envision her going ultimately ( medical floor, paliative care, closer to home...)

Discuss treatment options and what else can be done.  Discuss the phone calls.  While they may have asked for only one contact person, that is a normal request for the first days in ICU, it is unreasonable now.  If she has been in ICU for 4 months, the family has a right to a few calls.

As a nurse, I think it totally reasonable that the children of a long term patient be able to call daily for an update of how "mom's " night went.  Of course you have to expect this conversation:

"hi this is Serena, I am calling to see how things are with my mom this a.m."

"hi Serena, your mom had a quiet night and the docs have just been by, no changes to her plan today"

"ok, thanks very much"

Nurses handle calls, it's just not easy during rounds or break times so ask for when to call.

then I think you and your siblings should also have a frank but gentle conversation.  Let everyone talk about how much and what they can do.  Sometimes when we aren't open with each other, guilty feelings or unreasonable feelings crop up.  We expect tath so and so should be able to do this and that and it is possible that we are all unreasonable.

When my father in law was ill and dying, my husband drove the 4 hour round trip twice weekly after work.  He would leave Toronto at 6, drive to hospital in London by about 8:30, visit for 20 minutes or so, grab a sandwich and be back in Toronto by 11.  Then on weekends we would go for the day on Saturday .  I went on other days alone and the brunt of visits fell on my sister in law who lived in London.  She wanted more visits from us, but it was all my husband could handle

It was exhausting and emotionally draining and we only did it for 3 months.

Perhaps if you all think creatively there are some other options. 

Good morning Serena.  You seem to have had a certain amount of help earlier in this heartbreaking time with meals etc.  Would it be possible to nudge these people again and remind them that things are still pretty tough for you?  It is unfortunate that your minister is too busy to 'be there' for you - is there maybe a Pastoral Care group at the church that could be put on alert to serve where the minister can't?  I know someone who who spoke with a minister from a different church. 

It was good to be reminded about the services available from hospitals sometimes.  Maybe you could contact the chaplain or Social Worker attached to the hospital.  If you had one of these people 'on your side' maybe they could check on your mom and you could talk with them for an update instead of the nurses who don't want you calling?

I really feel for you as you do your best with this situation.  It is so hard to be in a different community from a sick loved one.  Been there, done that, got the wrinkles to prove it!  One thing I struggled with was that whole notion of 'taking care of myself so I could take care of others'.  There were times when even the tiny decisions were just so hard.  Should I take time to make and eat a healthy meal or pick up some fast food?  Should I go out for a badly needed bit of exercise or get back in the car and drive for hours?  Should I try to communicate with someone who just doesn't understand or do what I can to cope?

Cyber hugs coming your way (((Serena)))

Serena, I don't really have any suggestions to add to what has already been said.  I'm just posting to say I'm thinking of you during this difficult time.  Make sure to take some time for yourself!  (Even if it's just a few minutes a day) 

Remember that next time you are asked for an offering or to tithe.   Do you go to Church?  If you do it may be time to reconsider that.  If you don't then you are not missing anything.  Churches are notoriously bad at giving any type of grief support.  Count it as a blessing though you don't need his next to the throne of God advice anyway.

The only thing I can say is take care of yourself.  Nobody else is going to.  Twice a week on a nearly five hour hike is a lot for a person who is working full time.  If you are tired you need to slow down before you get sick or get into an accident.  Remember you have to take care of yourself first or you will be unable to care for others.

Thanks.   It is hard to relax when you are tense all the time and by their very nature leisure activities relax me.

Actually, I have.  I did not find the chaplain nor the social worker helpful.

I met my sister at the hospital yesterday.  We do not live in the same town.  My mom knows my sister or at least seems to know her.   She spoke to her and held her hand.  But what seemed odd is that she told my sister "they told me my mother died yesterday"  If my mother was speaking to myself or my sister she would have said "Grandma died yesterday.  So if her mother just died she has gone over 40 years back in time which means that I don't exist and my sister is a little girl.  So I wonder if she thinks my sister is her sister or something.  

What was good is that my sister saw how my mom ignored me and was shocked.   After this when we went into the waiting room (and before I went to Tim Horton's) I told my sister that my visits were not doing our mother any good so I should just come once a week until she knows me again.   My sister agreed.

Of course if her condition deteriorates I will go that day but I really feel like the trips to the city are useless right now.

Sounds like a worthwhile visit Serena.  It seems you and your sister are at least 'on the same page'.  No doors were slammed shut, you can relax and get some respite from the frequent long drives and the difficult visits with a mom who doesn't seem to recognise you (that must be incredibly painful). 

It is.   I feel so alone now.

Greetings!

Serena, what a rough time this is for you.  Through any trial or challenge it is important that one takes care of themselves.  I'm glad you and your sister have come to an agreement that at this time for you to go once a week is sufficient.  I hope supportive, encouraging people where you live are guided to help you out at this time.

Hope, peace, joy, love . . .

Hi Serena, I am glad you had a talk with your sister.

It isn't surprising that your mom is making mistakes about who people are.  My mom will sometimes ask me if her mother knows she is away, or wonders if she will be late for dinner.  The combination of sensory deprivation in a hospital, the meds that she may be on lead to a level of confusion in many patients

She most likely can slip in and out of that confusion , right in the middle of a conversation.

My mom can talk about my kids and then her mother as if we are all contemporaries ( my grandmother died in 1961)

My attitude is to enjoy my visits with my mom, not to have any expectations for how she will react to me, and to recognise that I go for myself, not really for her.  Half hour after I leave she would have no idea I was actually there but i know.

Serena, when my Dad was very ill,  in his mind he went back to the past when he was young chopping wood for his father, and then he believed that he was  in his army training camp. It seems when ill and confused people go back to the past. I found this very difficult and my thoughts are with you.

I think it is wonderful that you finally had that talk with your sister. Maybe things will be easier from now on.   Hugs..........pm

Thinking of you Serena,

on your drives,

and as you deal with your mother's illness. Wishing you peace.

Serena, there are many helpful suggestions here and I shall add one more. In our area there is a Caregiver Support group.  It is a group of people who are experiencing similar difficulties and I have seen how effective their meetings are on the participants. Perhaps there is something similar in your area.

It is my belief there are no right or wrong answers other than you do need to consider your own health.  I suspect you have always been "the strong one" and as a result people, even yourself, will take that for granted.  There is no weakness in saying you are tired; for even the strongest must sleep.

Be well,

LB

Alone we can do so little; together we can do so much.

Helen Keller

serena, so sorry that you continue to carry this load.  Sounds rough.  Our Dad's family was a 3hr drive from here...and he also did it to care for Grandma , then Grandpa. I have done those trips solo, and I know they are ok the first few times, but, after as long as you have been doing them, no wonder you are tired!  To then get there, and not be known would just add to the burden/frustration, i would think.

sounds like you need a break, and glad that you had the conversation with your sister.

Serena, I have read through this thread and my heart aches for you.  What a tough time you are going through.  So hard.  And not having anyone at home to discuss your visits with upon your return must make it even harder for you.  I'm glad that you started this thread, so that at least we can be here for you.

Some of us have experienced similar struggles with our own parents/grandparents/in-laws and we understand the pain.   These visits are not easy on anyone, and I sense that the distance travelled makes it even harder for you.  I know that when I visit my mother-in-law the drive home is very hard.  I have talked myself out of going to visit her often.

Lastpointe made some comments that resonated with me however.

Very wise.  I think that I do feel better when I go, than when I don't go.  The trick for me is to realize that in that few minutes that I am with my mother-in-law she is not alone.  She often ignores me, and at first that hurt a lot.  Other times she doesn't know who I am but at least she knows someone is there.  Five minutes later she will forget that I came, but in that moment, that one moment she knows she is not alone......and I know it too.  That gives me enough comfort to get me to the next visit.  Long gone are the days that I will sit and chat with my MIL.  Long gone are the days that she has anything to offer to her family.  I miss those days, but today is a different day.  I can sit with her a while, touch her hand and we will know in that moment that she is not alone.