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Mom's time is coming (descriptions included, sorry)
Meowcats
Posted: Sunday, April 13, 2014 12:48 AM
Joined: 12/21/2011
Posts: 13


I think it's sunk in that this is it.  Mom's been in Hospice (at NH)  for nearly a year now, and it's her second time in hospice (the first time, she improved to where hospice wasn't appropriate any more).  She's been in the NH for 4 years, and in assisted living for 4 years before that.  And for the past year, it's been a very slow decline.  Now, suddenly, things are happening.  Things that are not good.  First, Mom was "having trouble" swallowing.  So they started to add thickener to her liquids (she was already eating pureed foods because she seemed to eat more when she didn't have to chew as much).  Only a few weeks later, I was helping her drink some milk, and she inhaled it.  It was awful, it sounded like she was drowning and I was so scared!  But the nurses said nothing went into her lungs that they could tell.  That was 2 weeks ago.  Last week, from what I can gather, it happened again, with the NH staff, though, and a mouthful of yogurt.  They had to use a suction machine to get her throat clear.  Hospice has now urged a change to a liquid only diet, because she seems more willing to drink than to eat.  Yesterday, we DC'd all of her medications except her small dose of Ativan and a tiny dose of morphine (prescribed a month or so ago for an infection).  I have been afraid to "feed" mom since that one night, I'm terrified that I might do something to increase her suffering.  Tonite I was visiting, and the aide (whom I am fond of), gave mom some yogurt in milk (that and a high calorie supplement drink has been the staple now).  My mom drank a little, but not much.  It sounded like there was a lot of phlegm in her throat and she tried to cough a couple of times but it didn't sound like she got anything up.

Hospice said it "could be weeks" if she keeps taking in calories/fluids.  Days if she stops. 

I'm scared.  And feeling guilty for a million things that I should've done differently.  Even though I visit her every day, sometimes it's not for very long.  Sometimes it's just hard for me to be there with her, making conversation or reading something that, in the grand scheme of things doesn't really matter any more...sometimes I sing songs that she used to like...but sometimes it's just hard for me to be there and watch this happen, so I stay long enough to talk to the nurses about how things are going, and to tell Mom I love her, then I had home. I wonder if I should be taking some time off work to visit more....but my vacation time is finite and what if I need it later...?...see?  guilt.  This has been going on for so long.  I have, for most of the journey, thought I was ready for this.  But now that it's imminent, my heart is pounding and I just want to wake up from this nightmare--I know I just have to go through it, like all of you have.

I guess I'm just writing this because while I haven't been a prolific poster on these boards, this has been the place where I've turned for advice and comfort so many times in the past.  Just knowing that others have walked the same path has been a comfort.  And now...I think we're on the last path.

If any of you can offer any words of wisdom or perspective, please feel free.  Thanks to all of you for being there.


farawaydaughter
Posted: Sunday, April 13, 2014 3:00 AM
Joined: 4/19/2012
Posts: 414


You are doing a lot! Don't beat yourself up that you should be doing more, visiting more etc........and yes you may need the time off later.

 

I bet feeding her is scary, it sounds scary to me. I'd leave it up to the professionals, but that is me. Just be the daughter.

 

There is no telling how long your mom might be in this state she is in. So there is no telling how long it might be. That is a hard way to live, on the emotional edge at all times.

 

My mom lost the ability to swallow.

 

You are there now, visit when you can, short or long visits it doesn't matter.

 

It is hard period. Try to allow yourself to be gentle with yourself as well.


CyndiR
Posted: Sunday, April 13, 2014 7:41 PM
Joined: 6/20/2013
Posts: 311


I'm so sorry you are at this point in the journey.  My father's (and my) journey ended this past Tuesday.  Much like your mother, Dad declined so that we gave him pureed food, and for the last 2 days, liquids only. 

 

Like you, my brother and I have been playing the "shoulda, coulda, woulda" came along with the "what if" game.  You did what you had to do and what you thought was right for the situation at the time. Bottom line, is your mom safe? comfortable (relatively speaking)? and getting her needs met (no infection, no bed sores, or care for the sores if they are present)?  At this point, they have regressed back to an almost infantile stage--including difficulty with swallowing. 

 

Is your employer large enough to use the FMLA?  You should be able to take time off to care for your mom, even if unpaid.  Now sure how it would impact your vacation time.

 

You are in my thoughts and prayers.


Meowcats
Posted: Monday, April 14, 2014 9:09 PM
Joined: 12/21/2011
Posts: 13


Thanks to both of you for your kind words.  I am feeling better tonite.  Still scared out of my mind, but a little less because of your support.
Bubbily
Posted: Sunday, April 20, 2014 9:06 PM
Joined: 7/29/2013
Posts: 473


Meowcats,

I am about the same spot you are in with my mom.

I have also gone through the same spot to the next degree with mom 3x since last july.

I also have to work.  I cannot retire yet.  I have no one else to pay the bills.

After her downturn last Nov.  hospice was doubtful she would last through christmas.

I debated taking 3 weeks off between holidays( I'm a teacher) .  I did not after advice on the caregiver board.  She rallied.

In the beginning of Feb, she aspirated, fluid in lungs, fever, would not wake up.  I was prepared then,   took time off.  She amazingly improved , woke up after 3 days of no food water, and a semi comatose state.     I was there those days, we were starting to make the" arrangements" or at least talk about them.  

I got a call at 10 at night, I was totally expecting it to be " The Call". the hospice nurse said, " She's baaack" .

That was more than 2 months ago.

i have been told that this can go on months and months in someone with no other health issues.

I made a choice,  I have cut down on the number of visits per week. It is almost an hour after work during the week to go there.  And mostly at that time, she is sleeping.   I have to continue on with the necessities of my life, I know my mom would want it that way. She always took care of her self . 

Emotionally, it has been a good thing to cut down my visits.  She is recieiving excellent care and the staff just loves her.   She doesn't know who is being kind to her.      I do not feel guilty anymore.    

I do not thing you need to feel any guilt.  It sounds as though you are doing everything possible to make sure that she is well cared for.    I applaud you! You are a kind and loving daughter.  

 


CyndiR
Posted: Monday, April 21, 2014 8:28 PM
Joined: 6/20/2013
Posts: 311


Meowcats--

How is it going?


Meowcats
Posted: Monday, April 21, 2014 11:54 PM
Joined: 12/21/2011
Posts: 13


Hi Cyndi, thanks so much for asking--mom is still here with us, but today they determined that she is choking on everything they tried to give her (liquids of all consistencies and flavors).  So she is now on "comfort care only", in bed, and they are not planning on offering any additional fluids unless her condition changes.  I know it won't be long and I'm feeling pretty scared.  Intellectually I have been very prepared for a long time.  Heart-wise, though, it feels like every little step towards the end is a brand new wound.  I am comforted by knowing that others have been where I am now.  Hospice had said earlier this week that "if she keeps drinking enough, it could be weeks" (but we know that isn't likely at this point) and they also said "once she isn't able to drink, it'll be a matter of days."

 

Bubbily, it sounds like your journey has been rather similar to ours, I'm sorry that that is the case....I am hoping that my mom can rally once more, like your mom has, although I'm trying to prepare for what seems inevitable.  I really appreciate you sharing the conclusion(s) you came to as far as how much time to take off, how often to visit, etc., I wish I could think that clearly about all of this. When my mom moved into the assisted living, and later, the nursing home, she was not comfortable doing any of the activities (like music programs or exercise class) by herself, so I would go as often as I could to get her out and "doing" something.  As things progressed, pretty much the only activity we were doing was the church service on Sundays, but she still wouldn't go without me.  It's all kind of evolved into me being there every day, and now I just feel like I need to be there to ask questions and advocate if I need to.  My mom, also, though, is in a nursing home that is staffed by very caring people, which makes me feel better when I do miss a visit.  As you can see, I'm really good at imposing guilt, though, so most of the time it's still easier for me to be there at least for a few minutes.  Thanks again for your kind words and I will keep you and your mom in my thoughts and prayers.


Bubbily
Posted: Wednesday, April 23, 2014 10:56 PM
Joined: 7/29/2013
Posts: 473


Meowcats,

I relate totally to what you are saying.  It has been a journey to come to this place.

A couple of months ago I realized that I was becoming a wreck. I started by designating Friday after work as my off time. I schedule everything else so why not time off? ,  and I don't stay late that day( Im a teacher so there's also no real time off) , I do what I want on that day, meet with friends, shop, see a movie, and more often than not spend time at home with my dog and a book or chat on the phone or even cleaning.   I never cook on Friday's, but , in the beginning, just scheduling time off of everything, gave me an opportunity to recharge  and not feel guilty. It was hard at first to have that time.  I look forward to it now. 

Of course, if hospice or the care home calls, I'm on it.     

You might try a small block of time during the week that works for you.

Good Luck and keep us posted.  I got your connection request. 


CyndiR
Posted: Thursday, April 24, 2014 5:16 PM
Joined: 6/20/2013
Posts: 311


Hugs to both of you Meowcats and Bubbily......You are both entering the stage that seems endless but ends too quickly.....
Only Kid
Posted: Thursday, April 24, 2014 8:09 PM
Joined: 11/29/2013
Posts: 160


Meowcats, my cousin went through this experience with her mother 15+ yrs ago, when ALZ was less prevalent and less resources.  On thing she told me was "don't look back".  Its easy to second guess your decisions.  Just know that you made the best decisions you could at the time.  Please don't beat yourself up.  This is a very difficult disease to deal with.  Sending prayers to you and your mom.
Bubbily
Posted: Thursday, April 24, 2014 11:02 PM
Joined: 7/29/2013
Posts: 473


Cyndi

That is exactly how it feels to me, although, I haven't gotten to the part that goes quickly.  

This is by far the hardest thing I have had to go through in my life.  


CyndiR
Posted: Friday, April 25, 2014 7:37 PM
Joined: 6/20/2013
Posts: 311


I understand that sentiment....it was hard watching my mom go back and forth between good health and bad health during her last year, but by far, I think watching what Dad went through was by far harder to watch.....and feel helpless....and second guess every decision.....and know what the end was going to be, and unable to make him understand what was happening and why......

 

Again, cyber hugs and a shoulder to lean on.....


Bubbily
Posted: Monday, April 28, 2014 8:49 PM
Joined: 7/29/2013
Posts: 473


You guys are fantastic!   Thank you for the support and hugs. 

Mom has now started not opening her eyes most of the time, though she is awake and will open her mouth to swallow food. This is a change over the last couple of weeks.   I think her last hurrah is over at this time. She is starting to have skin issues. 

She had a choking episode on Saturday, I think the time is approaching when she will not be able to swallow well.  

Meowcats-- hugs to you.   I do not wish this part of the journey on anyone else. I too hope your mom has a last hurrah.  There were many special and precious moments that have happened since then.

It has also given me time to plan what I think of as mom's celebration of life, the very last thing that I will ever get to do for her.  My aunt and I have been working on different details, a friend has made a beautiful cd of pictures with music from mom's childhood to now.  It is beautiful.   I was able to make thoughtful decisions about music.  I'm writing a eulogy to read for her at her service.   

All of this has helped me to cope and work through grief.  I'm her only daughter and we are very close.     

When mom was in the no eating, drinking couldn't be woken up stage, hospice said that she could last 3 -4 weeks. With the only water being moisture on the little sponges to wet her lips.  

They told me in their experiences, dementia patients often linger longer than others in similar  conditions.  Maybe they have no stress about what is happening?   Who knows.

I often feel funny posting on the other forum as there are so many dealing with issues in the earlier to mid stages. 

I think we need a new forum for those who are at the end stage. 

 

Good Luck and keep us posted on what is happening. 

joni

 


hanginginthere
Posted: Wednesday, April 30, 2014 6:24 AM
Joined: 8/22/2013
Posts: 146


I would like to send a big HUG to all of you loving daughters.  How blessed are your Mothers to have such loving, caring, beautiful daughters.  What a tribute to your Mothers.

I lost my husband recently.  He was in a NH for only six weeks.  His was a very sudden decline.  Everyday was something new, from walking with assistance to not walking, from eating by himself to needing assistance, then having trouble swallowing to refusing to eat.  He was with Hospice two days before he passed.

Once he stopped eating and then not taking liquids, things went very fast.

You are doing a great job, please don't beat yourself up. Ask questions and keep the lines of communication open with the staff at the NH and Hospice, they are there to help and support you.  I am retired so I could visit everyday, but it was difficult to see him like he was.  You are dealing with a full plate, you must also take care of yourself so you can take care of your loved one.  I Prayed a lot, really a lot, towards the end asking the good Lord in his mercy to take my DH to a better place.

You need your strength for dealing with what is to come, even though I had pre-planned the final arrangements, there was still so much to do and take care of.  Hopefully your employer will allow you to take some time off to take care of things.  Keep your chin up you are doing a great job and you are doing all you can under such terrible circumstances.....I hate AD......

 


King Boo
Posted: Wednesday, April 30, 2014 7:58 PM
Joined: 1/9/2012
Posts: 3440


Meowcats-

I don't think any of us can truly be emotionally ready for the death of our parent.  Even if intellectually we are, the emotions that we need to face during the last phase of their lives is insurmountable to anticipate.  . .overwhelming panic hits me. . . .when just weeks before, I was quite calm and organized as I contemplated making final arrangements, starting to manage the estate, etc.

 

Aside from the pending loss, it is a phase that we can do little about.  Our culture is all go, go, go, plan, plan, plan.  How do we travel with a relaxed enough grasp to cope with our daily life and yet cherish what little time we have left with them? 

I don't know.

 

Visit as you can, listen to that inner voice that tells you when you should go.

Just days before staff recommended transfer to a snf and palliative care, I found myself staring at the calender in Dad's room where I always mark off my visits, and noticed that my frequency had increased significantly.  Subconsciously, I knew things were not going well. . . .and that it was an omen. 

 

day by day, or moment by moment..  I hope staff is very supportive of you.

Meowcats
Posted: Thursday, May 1, 2014 9:00 PM
Joined: 12/21/2011
Posts: 13


Bubbily, my mom did not open her eyes for about the last 10 months of her life, except every once in a while.  When she did open her eyes, especially towards the end, I wasn't sure if it was good or bad.  I'm not sure if the not opening her eyes was because having them open was too confusing, or something else.

 

And I agree with you, as my mom was in the very end of the end stage, it felt more comfortable to come to this board and get support from people who've "been there", as opposed to people who are just starting the journey.

 

I don't know how to send any kind of private message on these boards, but I wanted to let you know that you and your mom are in my thoughts and prayers.

 

Now that it's over, I feel very empty and alone.  Such a big part of my life is gone, and I know it's early, but it's a very strange and sad feeling.  Even though my mom couldn't talk, I still would tell her about things that were going on in my life....

 

<< sigh >>

 

this being a "grown-up" is definitely no picnic.

 

 


CyndiR
Posted: Friday, May 2, 2014 4:52 PM
Joined: 6/20/2013
Posts: 311


Meowcats......my hugs and love for you.  It is a bit disconcerting when they are gone....that feeling of we should be doing something, anything, going there, picking up, etc.   I'm almost 4 weeks in, and that feeling hasn't left.
deerenee
Posted: Tuesday, May 6, 2014 10:50 AM
Joined: 5/27/2013
Posts: 37


I know that feeling of emptiness, Meowcats and CyndiR, I'm two months in and it is the hardest journey I've had in my life. This board has been such a help in the healing.