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Giving up.......?  
Started by Razz
04 Jun 2015, 9:40 PM

It took about 3 weeks to get Home Care in place and have all her meds sorted out.  I'm sure Mom was befuddled by all the attention and she kept insisting that she didn't want to "bother" anyone.  She had a hard time accepting the concept that this was their job to help her feel better and make life just a bit easier for her.  

For as long as possible I've tried to let her keep as much independance as possible.  However when faced with the fact that she has lost considerable weight and not taking her medications I knew that it was time for some assistance.  

She's not saying "no" nor resisting the changes in her routine but now she tells me that there is no point for it anyway.  She's old and you can't cure old.  She's becoming more and more confused and forgetful so I feel much better that there is someone checking on her twice a day but....... there is always a but .......  she also seems to be going downhill fast.  Odd things that she used to always do are things she no longer bothers with.  She doesn't always get dressed for the day unless prompted to.  She doesn't bother combing her hair and often puts on anything at hand which is often dirty.  She either doesn't see it or she doesn't care - I'm not sure which.  

I had arranged for her carpet to be cleaned today as it deperately needs it.  It was supposed to happen on Tues. but she just didn't want to get dressed or go out.  So we re-booked for today.  She actually got a visit this morning by her Case Nurse who put her prescription cream on some very bad areas of psoriasis.  She has apparently stopped using that on a regular basis as well.  She told me that there was no point in doing it as it would not cure it.  Sigh.... she's right but it does help with the itch and discomfort of it.  Well that visit seemed to have worn her out and she was very, very tired.  I took her out to lunch but she hardly ate (her favorite - Belgium waffles) and then asked to be taken home.  She just wanted to go home and lay down.  Naturally the plan was to keep her out for a few hours so that the rug could dry.  She really just wanted to go home.  I stalled as long as I could but it seemed cruel to keep her out and so I took her home.  They were just finishing her carpet and the suite was like a suana.... and the rug was still VERY WET.  She didn't care - she just wanted to have a sleep.  So I brought her into her suite, sat her down in her lounge chair, cleaned up the marks the tires from the walker left and turn on the fan in the bathroom and cracked her balcony door open a small amount.  

A couple of weeks ago when I had her into the doctor because her feet swelled so bad (had an x-ray done and it was not her heart) he told me that he would put her through having all kinds of labs done since it's obvious that she gradually failing and he didn't want to give her any unneeded stess.   Well now the nurse is wondering is she shouldn't have some blood work done because she's so easily tired. I TORN. I'd like to put off calling her doctor and give it a day or two so it's not on top of all the other "activity" that's been going around her.   Personally I feel that this is the right choice as having lab tests done has always been distressful for Mom.  

Naturally another part of me feels that I'd be letting her down by not having things "tested" and worked out.  

She's 93, has COPD, moderate dementia, some mobility issues and now just feel tired all the time.  I can't help but think that if that's what she wants to do at this point why not let her do it?    

At what point does one decide to let nature follow it's normal path?  Both the doctor and I are going for comfort not quantity.  Should I follow my "instincts" and let her be for a few days?  Would it make that much difference in the end if I do?  

It's not so much "giving up" as facing the reality of the situation.  I think anyway.  Man this is so hard!  

Razz  
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Reply by Razz
04 Jun 2015, 9:42 PM

...when talking about the doctor visit that should say "he wouldn't put her through"........
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Reply by KCBJ
06 Jun 2015, 8:16 PM

Hi Razz. I'm writing bluntly. In answer to your question, you can NEVER give up on someone's life. You help them fight and give them reason to fight. Because as for someone who feels the guilt every single day that maybe I could have done more, maybe I should have done this or that, I can tell you the feeling isn't pleasant. I can't go back and do it again and do it differently. My mother was 99 and should have still been alive today. I firmly believe that.
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Reply by AdoptedSon
06 Jun 2015, 8:41 PM

Hi Razz

There is no easy answer, that I can tell you from experience. I went through this with Mom, and it is the never ending question, do we or don't we do this.  Comfort and quality are important, I know that from dealing with Mom, but it was also perhaps different in my case, as I lived with Mom.  Not sure if that applies to you.

If there is only the 2 visits daily from the home care company, perhaps it is simply that she is lonely. I know Mom felt that way too, as I was usally downstairs at the beginning, in our own suite.  However, once I started staying upstairs, working upstairs and just being there with her, Mom seemed to find it easier, her desire for food was never great, but it held its own, and I think perhaps that is one of the hardest part of being a remaining parent.    The feeling of isolation, of loneliness.

Not sure where you are, but if in BC, well, the lab can come to you, if the Doctor orders it, and I know Mom had regular blood tests, which I think is important. Granted Mom was on Cumadin, a blood thinner, but our Doctor routinely checked for anemia, for infections, etc.  At times a simpy fix of an iron pill was all Mom needed to perk back up.

You talked about an ointment or cream, for her sores, and perhaps that is something you need to see about, because having sores, having an itch, isn't comforting. I know Mom would say it was okay, which is something older people do. They are afraid to ask for help, because they have this notion that somehow they are asking for too much, or that it is too much to ask for.

One thing I learned, was to constantly assure Mom, that me being there, me putting on the creams she needed, was not an issue, not a problem.  I would be working at my computer, during the day, and I caught her looking up at me, a thin smile would cross her lips, and she would know she was not alone.  That smile meant it all, and sometimes I think, that is all that is needed.  The ability to know someone who cares, is there with them.

When one is alone, they imagine the worse, they feel like, well what you said she seems to be feeling, that it doesnt matter, and yet, to us, the people who love them, it does. They simply just need to be shown, that we do care, that they do matter.  It is about not just giving their body comfort, but their mind and heart too.

No matter our beliefs, they are afraid too, and we need to summon our own courage up, to talk about those things, to tell them that they will always be in our hearts, our minds, our thoughts, long after their body has left the earth.  They need our reassurance, and for some strange reason, it helps us too. 

I am rambling a bit, its been a bit of a day, a lot of memories flooding in, but I know that I may have messed things up in many ways, not made the right call here and there, but the one thing I know I did right, was to be there. To just be in eyesight, earshot.  

There is no easy answer to when is enough, enough.  But sometimes you have to go with what you feel, not what someone else tells you, not the doctors, the home care workers, or the case workers.  Sometimes you just have to let your own heart decide on what to do.

But things like going out to labs, going for this and that test, can be more upsetting than should be. See about in home lab tests, it is only a pin prick and least the one's who came regularly for Mom were good at their job.  But someone has to be there, has to hold the hand, has to always have a smile handy, telling her it is okay, that it not a problem.

Mom was lucky in that our Doctor came to us, he had nurses who would come to check on her, which made life a lot easier for Mom, given her mobility issues.  But I did learn one important thing from all that, which was to not let her sit, to let her get comfortable in being wheeled around in a wheelchair.  Keep her using her own legs, with aid, as long as possible.

Maybe others here can help better than I can, but if you can, find a way to not have be alone, and talk with her, even if she just sits and says nothing. Find the small things that made her smile, made her laugh, and have them all around.  You never know what will suddenly give her a spark.

But honestly, it sounds to me, like she just needs some reassurances, that she does matter, that she isn't a burden, a chore.  It is not easy to do, and it is a total gut wrencher too, but then, it is what we do, isn't it?

Ian

 
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Reply by KCBJ
06 Jun 2015, 9:42 PM

What Ian said. I also had my mother with me for the past 20 odd years. I agree that there could well be the lonliness. I went through a lot of effort to ensure that any home care providers talked to her. Tell her stories. Make it up. Don't care. But if I come home early and find you on your phone, we have an issue.


We also have dogs, 4 to be precise, that gave mom comfort. When my mom wasn't able to get out, I had a doctor come to the house. We also had a weekly nurse visit to evaluate any sores or swelling. One of our home care workers was an RN (don't ask).


Your mom Razz needs you more than ever now. She needs to know she isn't a burden and her life, not death, means more.  The night is when the real lonliness kicks in.


I have tears welling up. Memories come flooding back. Dealing with my mother was a constant uphill battle. She suffered from severe nasty dementia.


 

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Reply by Razz
06 Jun 2015, 11:12 PM

Thank you both for your heartfelt responses and relating your own experiences with a very similar situation.  As I read through them I realized that everyone is different and every situation is different and also how limited we are in expressing our feelings on this one-way medium.  What comes clear to me is the fact that you both obviously loved your mothers dearly and that you feel a great loss now that they are gone.  You both talk about cherished memories and things that could bring a smile to your mother's faces.  Those are things to hang onto when grief feels so acute..... they will and can provide a great deal of comfort.  

Mother and I don't share those precious memories.  From the time I can remember things she was never ever happy with anything I or my brother said or did.  She never wasted an opportunity to tell us how "stupid" we were and what a great disappointment we were.   My brother moved his family a 1000 mi. away in part because of her horrible verbal abuse she gave his wife and to himself.   Did you know that you can't buy a Mothers Day card that says "Happy Mother's Day You Old Bat."   It was a series of small strokes that brought about the change in her behavior towards me and she is much easier to get a long with now.  I've worked very hard a learning to let the resentment go and just build my compassion for her as an elderly woman who needs some attention.  Having said all of this however it doesn't change the fact that my relationship with my mother is "complicated" at best.  

My brother who was 9 yrs. older than me just passed away this past Nov. from cancer.  I was very blessed to see him before he passed and we had that "tough" conversation that needs to take place.  He was carrying a lot of guilt and I was able to reassure him that what he thought of himself as a son and a brother were wrong and that I loved him very dearly.  He was near the end at this point however ..... bed ridden and in a lot of pain.  He wasn't scared to die but he wasn't sure if as he said "finished yet".  He wanted to know if his "job" was done.  I let him know that he had done a many great things with his life and he should not have any regrets.  I asked him if he was tired of "fighting" because his family expected him to.  He said yes - he didn't want to disappoint them.... but he was so very tired of fighting and was ready to let go.  I told him that it totally up to him to make that choice but that I knew that what ever he decided he would eventually find rest and peace.  In other words I gave him permission to "let go" and let nature takes it's course.  Suspecting that he really needed support on this and reassurance from his children I prompted them to put aside their wishes to try heroic things because they weren't ready to say good-bye and what their Dad may be feeling.  

In the end they too had that "difficult" conversation with him the next morning.  With in hours he slipped into a coma and died 2 days later.  He is now at peace and I don't regret one word I said and his daughters feel the same.  It felt like it would be more of a selfish act to keep pushing for more than to let him decide.  

Now having said all of these things I hope that you can see that things with Mom can be complicated and I'm doing my very best to do what is right for her but I do question myself at times.  I don't want anyone to think that I would do anything less because of our history - heavens no.  But as with my brother I don't want to get in the way of how she feels and what she may or may not be ready for.  

There is so much more I could share here but I'm looking for a bottom line I guess and I'm not sure if there is one.  My mother does not live with me but in a Seniors Lodge which does not provide any nursing care - hense the Home Care situation.  Until she reaches a point where Home Care can no longer provide her with the care she needs she'll be reassesed and then put on a waiting list for a suitable care facility for her.  I desperately hope that it doesn't come down to that. I want to reassure you that I am in no way abandoning her.  

I will call her doctor Mon. and see what he suggests.   Oh and the cream is for her severe  psoriasis that she has been dealing with for over 50 yrs. now.  The best that can be done is to keep it from getting out of control but by the looks of things she has let that happen.  The goal with the ointment is to try and get it back under control...... then we'll see what route that takes us and Home Care will only do it for 2 weeks as it's a very strong mixture and can have some nasty side effects on her skin.  

Thank you again.  I have much to ponder on.  I also think I need to run this all past her doctor and see what he has to say.  

Razz  

ps - just to keep people in the loop I have day surgery scheduled this Wed. for a biopsy of my bladder wall.  I may be looking at cancer treatments and so I don't have to tell you that it weighs heavy on my mind as well.   
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Reply by AdoptedSon
06 Jun 2015, 11:27 PM

Wow Razz, you are carrying a lot for one person, and yet here you are, handling it.  Second guessing is natural, and I think, personally, that you are doing the best you can do, given all you have said.

One word of advice, that was given to me, that I struggle to hold onto, because after all, we are all just human, is that, we do the best we can, make the best decisions we can, but in the end, sometimes, our best just isn't enough. It isn't our fault, or anyones, it is just, that things are not in our control, as much as we would like to think, or wish they were.

All relations, parent and children, siblings, in laws, are never simple, nor easy. It is always complicated, but we do what we can, and honestly, that is all anyone can ask. It was what I was told, for as long as I can remember, and when the pain comes, the doubts come, the memories come, in the end, it is all I, or anyone has left to hang onto.

We did our best,

Ian

ps/ Keep happy thoughts for Wednesday, because happy thughts do make a difference, it gives the body strength. I know, I sound like Pollyanna, but I firmly believe that if we can think positive, it does impact us for the good.  It isn't easy, everyone here knows that, but at least, try.
 
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Reply by Razz
13 Jun 2015, 8:35 PM

Thank you Ian for your positive thoughts for this past Wed.  The procedure went well but now I have to wait for the results.  

Wed. afternoon while I was resting there was a bit of "trouble" around my Mom as she missed her hair appointment and the hair dresser phoned here to see if she should push the "panic button" or not.  My husband took the call and reassured the hairdresser that Mom had probably fallen asleep and when she's asleep she doesnt hear the phone.  This is all true and unfortunately she has been sleeping more and more lately.  

Although I had not had any sleep for a couple of nights ( the worry hamster was busy) and had been told to totallly rest for 48 hrs. I had to go into the city to see my Mom and find out where she was at.  She was just the same as how I've been finding her lately - still in her night gown and sound asleep.  When I woke her up she had no intentions of getting dressed and go down for her lunch - she said she just wasn't hungry.  I did the best prompting I could but the bottom line is I was not going to force her either.  When I got home .... when I should have been resting .....I put in a call to her doctor and also to her Home Care Case Coordinator.  

The doctor was not really surprised to hear how totally unmotivated she is but ordered some blood work to be done (they will come in to do it) and we had a good chat about what my hopes would be for that ever remaining time she has left.  We're on the same page ..... neither one of us what to move her to a facility with more care (I worked for 5 yrs. at an assisted living facility and I know what  happens to the residents like my Mom.  They facilities are understaffed and overworked - which means that she wouldn't have a lot of choice about getting dressed or not and whether she wanted to eat a meal or not.  The staff have to keep up with the residents they are assigned to and as such I've seen many a resident end up in a wheel chair parked somewhere as that was the easiest way for the staff to follow the care plan).  I don't want that for Mom!  So we''re on a wait and see plan and trying to make her days comfortable as possible.  He definitely does not want to see her loose the only thing that gives her pleasure which is her "smokes".  

The Home Care Case supervisor (lovely lady and RN) called me Fri. morning and wants to be a bit more "agressive" with the assistance she's been recieving; especially considering the fact that Mom is no longer going down for any meals.  She's going to expand the Home Care Aides duties to include "encouraging her to get dressed and even to help her get dressed if she allows it.  She going to have a meal sent up for the next 2 weeks to see if they can coax her into eating it.  That in turn will hopefully give her more energy and then that might in turn help with her appetite etc.   The problem with this is that the meal would be breakfast and MOTHER has never ever eaten breakfast....... from as far back as I can remember.  She is just not a breakfast eater and I told the Case Coordinator this.  The reason for picking breakfast is that there is already an aide there for her in the mornings to dispense her pills and make sure she drinks her Ensure.  The next one comes in the evening..... again for medication dispencing.  (There was a mess up with one of Mom's blister packs as the evening pills for 2 future night were missing.  We now have a whole months supply of medication and I have written the dates beside each day so if there's a mix up again it will be easier to track.)  Case Nurse is also having physio and repirtory come in and asses her...... I  have a feeling that it's just to cross the t's and dot the i's .   

She also told me that she felt that it would be ethically wrong for her to sit by and now at least try to improve things.  She does have a valid point ..... and struck to the heart of my delemnia.  

My visit with MOTHER this morning was heartbreaking.  She is really not interested in anything anymore.  She was asleep when I got there and was very confused when I work her up.  At first she told me I could go home as she didnt need anything.  (a pair of underpants on under ngiht gown would be a good start).  And so she sits.  In her room ..... having a smoke when she wakes up now ant then .... and follows the directions of the Aids when they come in.  I could not convince her to get dressed and go down for some lunch.  She told me that she definitely would go down for supper however........ I'm pretty sure that's not going to happen.  

I've taled to all the "right people".  I'm supporting their efforts even though I know that it's only postponing the enevitable.  I am totally depleted emotionally and honestly can't think of anymore that I could do at the moment..... except visit.  

Razz

ps - I should mention that because of so much weight loss none of Mom's clothes fit (another reason why she doesn't want to get dressed).  I have been looking desparately for closthes that "might fit" with out any luck (she is just skin and bones).  I would alter what I can but she won't put the pants on to let me measure.  Her under wear doesn't fit either naturally and everything has a safety pin in it to make things fit a bit better (she put the pins in not I).  So in the meantime I've been doing my best to keep them clean and am still seeking a way to at least hold her pants up until I can find something else for her to wear.  Sigh ........ I can't help but wonder what those that come in to help her must think!  For all intents and purposes it looks like I could care less about how she looks!!!   

 
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Reply by Razz
13 Jun 2015, 11:16 PM

My husband just got home from a golf tournament.  He doesn't understand why I'm so upset.....or why I'm fussing about things would be a better way to put it.  The last time he saw her was Mother's Day so I guess it's been about a month.  She had a bit more energy that day and we took her out for supper (which she hardly ate).  But she was washed, dressed and pushing her walker with out needing a bunch of rests inbetween.  And he won't be seeing her again unless she's not in her room.  He has Pulmonary Fibrosis and can't be around smoke.  Maybe next time I go I'll quickly snap a pic with my phone so that he'll have a better understanding of what I'm seeing.  He's trying to be supportive ..... but I think he's concerned about me and my frame of mind.  

Razz  
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Reply by AdoptedSon
13 Jun 2015, 11:37 PM

Hey Razz

You do have your hands full, but one thing, do not, I repeat DO NOT worry about what other's may think, you know you are doing your best, and those who matter know it as well, so to heck what others think.

As to clothes, well, perhaps it is time for depends, they are disposable, and easy to slip on, and are fairly comfortable. Mom wore them for her last five years, without much fuss at the beginning, as it relieved some of the distress of messing her undies, and having someone to help remove them and clean them.   The other benefit, is they can be quicky torn down the sides, for easier removal, if the mess is heavy.

Mom liked to get dress, until she broke her wrist, then she too didnt seem to want to bother, and it was a distressing issue for her.  We got her what are basically nightdresses, that were colorful, and quite easy to slip on.  They covered up her legs, down to just below or around the knees, and were lightweight.  It was simple to sip them on, and there also were some that had nice decorations as well as buttons.   Something you might consider looking into, and if my memory is right, Sears had several different styles.

A nice light housecoat was also the order of the day, and it helped to keep her from being chilled, even though the rest of us were sweltering.  Again something easy to manage, and not too expensive.

Thirdly, foot sock slippers.  They are socks, but will some footing on the bottoms, to help from slipping, and very easy to slip on and keeps the feet comfy too.  

All of these are a lot easier to put on, than the more formal stuff like blouses, skirts, etc.  Just something for you to consider.

The hard part of my reply is, do you have a DNR for your Mom?  If not, is it her wish?  It is a tough call, and I know Mom had one of those, which I really wasn't thrilled about, and gave me some restless nights, but it was her wish, and in the end, wasn't necessary, for which I am glad of.  To think of someone trying to resuscitate her, given her weak bones, I think it would have done more damage, than help, but that is something to discuss with your Mom, your Doctor, and yourself.    I will say, it is the hard decision I ever had to make, in caring for my Mom.

We tried safety pins too, but opted for something that had elastic waistbands, which didnt quite make it.  Sweatpant type of slacks, is what I mean, but Mom just didn't feel comfortable in them.  Again something for you to look into, if you think it might help.

Mom was not one who liked to eat, it was too much of a hassle, at the later stages, yet she would manage her boost quite well.  Some days, that was all she would have, but if she isn't mobile, is sleeping a lot, well she doesn't really need much food.  Liquids will help, will keep her body functions, working, so maybe let her have more boost instead of meals. Least it has all she will need, though solids would be better.

You do what you can, make do with what you have to work with.  It is tough, something our Government, our friends, simply do not get. They have no clue, until they have to walk a mile in our shoes, what it means to be caring for someone elderly.  Until someone gives them a good whack on the side of the head, all we can do is trudge forward, doing our best.

And you do need to try and snatch some rest.  Worrying won't help, being worn out yourself, isn't going to help, and while it is easy to say, believe me Razz, I know how hard it is to do. But try a bit harder, to let yourself have some 'alone' time.

Hopefully the news will be good from your tests.  I am sure all here wish you the same.

Ian 
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