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mom dying 
Started by winter
29 May 2012, 2:59 AM
hi i am new....and just found this site....for the last 6yrs i have been looking after mom, and in feb i moved mom in....she is only 62yrs old....she has esophageal and stomach varices, cirrohiss of the liver and portal hypertension...(nash), intestinal bleeding....she is diabetic....she receives 3 to 5 bags of blood a wk...for the last 2yrs....the last 6 months she has gotten worse....but 20 days ago we went to moms doc appt, and she was barely able to walk there or get in a car, the seat beat of the car no longer fit her...she had blown up that bad....so he recommended she go into the hospital...well she did this the next day....she is also jaundice...and sleeps alot, and was stationary alot...well 18 days the doc says she is dying, well, she was nearly in a coma.....then came out....she has alot of ammonia in the brain....she has been really aggressive and then loving....i have went threw so many emotions....i mean i cried all the time, and could barely stand myself.....i was so worried about losing her... and scared and then blank.....i mean i don't understand.....she is in so much pain....she has had no bowel movement in 18 days they have given her a fleet, and poohing stuff, but nothing....i don't understand how she is still here, and i never know what i am walking into when i go to the hospital......tolday she loved me, and tonite she was so tired and in pain, she sleep the hole time.....i am so ready to cry again....i don't know what i am going to do when she dies....i have not, not been busy with her....i love my mom, but i don't want her suffer, but it looks like she is doing her best....to stay with us a little loner.....I am not sure why i joined in, this forum, but i feel so alone, my hubby is great, and so is my son...but ...take care sorry, i didn't mean to ramble....
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Reply by Cath1
29 May 2012, 5:37 AM
Dear winter:

Welcome to the Virtual Hospice community. I'm glad you found your way to us here and I hope by writing to us you will feel strengthened and supported.

I didn't see your message until quite late but wanted to say I am so sorry to hear that your Mom has been so ill for so long and that you are now having to prepare for her dying. 

You have both had a lot to deal with these past few years most certainly. Your tears and sensitive feelings are natural. It's your Mom and you love her and hate to see her suffer. Her being hospitalized is difficult and I understand how you are uncertain about what to expect at each visit. Are you able to speak to her doctor to get updates about what's happening with your Mom? I hope so. 

It's great that your husband and son are there for you, but I understand your need to reach out to others who are experiencing or have experienced similar situations. I will try to write more tomorrrow as I must get some sleep now, but I just want you to know that you are not alone and we care.

I hope you sleep well tonight.

-hugs- xo
Cath1 
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Reply by Cath1
29 May 2012, 10:36 PM
Hi winter:

I hope you are feeling a little better today. Sometimes a good cry helps, but if we are upset and crying a lot it is really draining. We cannot always control our emotions, and in my opinion it's best to release them as we feel them.

My own Mom died a year and half ago. I understand how hurtful it is for you to witness your mother in pain and suffering over a number of years. It's not at all unusual that your Mom sometimes says hurtful things to you or seems to reject you, as many people when they are very ill and dying lash out in frustration and take out their fear and sadness on those closest to them. Your Mom may also be disoriented due to her illness and/or medications. Try not to let her reactions or avoidance of you to wound you too deeply. Your having been there for her during her most difficult times I'm sure is a huge blessing to her and I'm sure she appreciates and loves you immensely.

I imagine by the young age of your Mom that you are quite young yourself. No one prepares us to know how to handle life when it is challenged or ending. Please know that whatever you are feeling, it is completely fine to share your feelings here. You are safe to say what is in your heart and to express your fears. You don't need to apologize for rambling, winter, because if I had been on this site when my Mom was so ill and I so ill-prepared for her death, I would have rambled on for pages and pages!:)

I will not be able to write back to you tonight, but I will check in tomorrow to see if you have written to us again. Many others are here are listening to you and caring how you are feeling.

Until next time,
-hugs- xo
Cath1 
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Reply by winter
31 May 2012, 2:56 AM

hi, nice to hear from someone who has been threw so much as i myself....



my moms family is being strange, and well, they are hurting me, but saying things to be like i am not doing enough, i am trying to be a good of a daughter that i can be, i can no longer be there all the time....in nov 2010 i was in a car accident and i am in chronic pain, and awaiting a hip replacement ....yes at my age....but it is not happening for all long time due to my age, i am only 39, so i young but not young...lol...

my son is 12 and is able to handle his emotions, we have in the last 6 yrs lost 6 people close to us....my dad, my father in law, grandmother, great great mother....and aunt and a uncle....

moms illness has been on going 6 yrs...but only found out 2 yrs ago what it is, and that it was too late, and nothing could be done...and that it just had to run its course....

mom asked me today a question and  that is how did we get to this point....

The answer is she never wanted to go to the doc, and she never wanted to question him, or tell him she was not feeling good, she never questioned the blood work, or the hospital stays....it wasn't until she colapse did i take over her health, and made it my point to get to the bottom of it....

sometimes i wish i hadn't .....

as of today the doc called to give me a update...

the ammonia has increased and has now cause dementia....and paranoid delusions, and well her urine output is less than other days...and if it continues means death will be sooner...

as of now it could be a day, a wk, a month, no longer.....

she now knows everything i have come clean so she knows all, nothing i keep to myself...

she did not cry or say much....

she just reply oh, what next....

she said she remembered everything as to what she said to myself and to my hubby, but never said sorry

she has not said i love u nothing, i know she does....just she is so different and has always been different ...she has always been about herself and ordering me around and having me jump, even though i am in so much pain...

my doc just informed me i need to slow down...and well, said sorry and apolized, but said i need the rest and i know it....i am starting to get sick, and my ankle is kiling me, and sitting in the hospital for hours in the most uncomfortable  chairs, and they don't have anything else for me to sit on.....i am larger and well for some reason all chairs are for butts smaller in size...

they are talking about sending mom to a palliative care unit, and well she hates it....i don't know if it will happen, and if it does it will only maybe when her life is down to the 72 hrs mark.....or her life and death...

thank you very much for taking the time

and for telling me what i said is understandable..... 
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Reply by Cath1
31 May 2012, 5:13 AM
Dear winter:

Again it is late when I come upon your post so I have not the energy tonight to write a very lengthy response which I'm sure may come as a blessing in disguise to you as I do tend to drone on!;-)

I really just want to say to you how I understand how sad you are feeling, and most importantly, I care and hope to give you a brief moment of escape from your worries. It is extremely insightful of you and brave to have reached out to others via Virtual Hospice. You will not be doomed to repeat the same mistakes that your Mom has made by being cavalier or in denial about your needs regarding your health and well-being. You might consider that a diagnosis of dementia may and in my opinion most likely does colour the moods of your Mom. It is not her fault, neither is it yours.

You are highly aware that your time with your Mom is fast fading and that knowledge is very difficult to accept. Of course you wish, especially in this circumstance, to have kind conversations with your Mom, to hear and offer words of forgiveness, to demonstrate affection and feel it genuinely returned. These are very natural desires between mother and daughter and it is very sad that your Mom is not able, at least not lately or in the past, to meet you on the same level. You are wise to acknowledge that your Mom does love you because you know as I know that it's the truth. I understand your need to share deep expressions of your love for your Mom and hers for you, yet you may have to accept that she is limited now in what she is capable of expressing.

Should your Mom go into a palliative care unit I think you will both receive much more guidance and emotional support. Consider the possibility that your Mom may be feeling regrets for having neglected her own health, denying her own needs and failing to understand yours and if she is these type of unsettling feelings could also be the source of the distance she is putting between you. During these coming weeks and months do all you can to love and support your Mom and to understand that she is not meaning to hurt you. Your kindness and patience with your Mom as she struggles with her health will go a long way to helping you feel good about yourself and will be healing for you both in the end.

I will try to write more tomorrow, but tonight I hope you are getting some rest and a few moments free of worry. Keep ensuring that you make yourself and your own health a priority as well and do only what you feel truly able to do for your Mom. She knows she is loved, I'm sure. You are not a superhero and no one expects you to be.

-hugs-
Cath1 
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Reply by GirlWithTheBlackBeret
31 May 2012, 6:19 PM

Hi Winter,


My thoughts are with you during this difficult time. Caring for dying loved one is not easy. Don’t let the words or actions of your extended family get to you. Their opinions don’t matter because they don’t know what it’s really like. Caring for your mom for 6 years now, I’d you have done well by her. 


I agree with Cath1, the palliative care unit would provide your mom the best care. It’s not a scary place. It will be quieter than the regular part of the hospital, the staff are trained specially to support dying people and their families. Sometimes these units have more comfy furniture, trying to make things feel more home-like. Maybe you could ask for a tour of the unit? Then you could relay what you have seen to your mom to help her understand it better and so she would be less frightened by it.


Be sure to take care of yourself too as you have had a long and hard haul as a caregiver. You don’t want to end up in the hospital yourself. Maybe after visiting hours are over head out for dinner with your husband and son.


Hope this helps,


GWTBB

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Reply by winter
02 Jun 2012, 2:08 AM
Laughing

thank you both, you both are what i need, to be honest...my family don't have a clue, they have never seen my mom in her states....except once and my mom's baby sister said never again when i asked her to watch her for 6hrs, she was a basketcase...

it is funny how they are the first to say i don't believe that, when i tell them what the doc just told me....sometimes it hurts big time...my bubby says, that is them and that they are always for themselves....

i think he is right....

there is no money, when she dies....and there is no estate...so they don't seem to care...go figure....

I will have to pay for everything myself, but i am not complaining right....never have....and never will...

tonite my mom was actually happy to see me, she had a nurse call me, and of course she demanded i go straight to the hospital....and when i go there i fed her her soup, she ate about half of it....which i was happy about ....but she was so exhausted she just wanted to sleep....

i am so glad to have found people like u's who understand....what it i feel....

i honestly don't think we will make it to  the wing or floor of the palliative, unless they send her there for the 72 hour palliative care area.....which is possible.....my hubby and ii think this will happen.....

thank you so much.....

i really appreciate yous 
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Reply by Cath1
02 Jun 2012, 3:04 PM
Good morning winter:

Thank you for your kind words of appreciation for GWTBB and me.

I am most curious about the "72-hour palliative care" as I cannot imagine that 3 days of palliative care when someone is known to be dying is nearly enough. Maybe I am missing something but what is the criteria where your Mom is hospitalized that will determine that she can given the benefit of palliative care in a specialized area?

Palliative care is about improving quality of life, rather than about saving a life or extending life. It's all about comfort and making the person and their family feel most comfortable and cared for. I am amazed that your Mom does not seem to qualify for the palliative care area yet, and I wonder why.

Maybe my idea of what palliative care is about is naive, but if it is not available, offered or provided until the person's final 72 hours in life, that seems like an awful lot of time spent without help, support and care of professionals and volunteers in the palliative field.

I also wonder how anyone can determine when a person's last 72 hours may be as the morning my Mom passed away the doctor told me he could not say when death would occur and that for some people in my Mom's state it could take days or weeks. She died two hours after that conversation between me and the doctor.

Thinking of you today and sending you virtual care and strength to help keep you going. You are doing your best and I know that will make a big difference to your Mom. As GWTBB says, never mind the insensitive relatives, those who don't listen or believe you when you tell them what it's like for your Mom or you. They are not walking miles in her shoes or yours, and cannot know the emotional pain you are both feeling.

Your Mom and you and your family are in my prayers.

-hugs-xo
Cath1

 
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Reply by Tian
03 Jun 2012, 12:03 AM
Dear Winter

I greatly admire your commitment to your mother under such difficult circumstances. She is very fortunate to have you caring for her.  I don't know how things operate where your mother is hospitalized but in the palliative care ward where I volunteer a patient's stay can range from a day to weeks. Patients are not in the same condition when they are admitted and it is never known with certainty how long they will stay. Even if a patient is unconscious the palliative care ward still offers a better environment for the family to be. Wherever your mother may be I'm confident she will be given the respect she deserves.

Tian 
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Reply by winter
04 Jun 2012, 2:06 AM
hi there

just got back from the hospital, not a good nite....she seemed not to care if i was there, and had a clenched jaw, cause i am not doing enough for her....like staying there all the time....so she gets mad...and then just sits there....

of course i am not to take to this to heart, yes, I know, but it still hurts....

i was there tonite for 3 hours and was there earlier in the day and that time was 4 hours, but it is still not enough....she then says your leaving....even though she was going to sleep....

there is only one palliative unit, and it is full........and the hospital has a general ward and it is for all....
so you only get into a palliative care unit long term if someone dies...

the 72 hours palliative is for people in the window of that....the things that the look for are:
urine output, the less....amount in 2 days....
the sleep pattern
the breathing pattern
the intake and output...of food
also body mass, from time in to the day....

those allow them to give a rough timeline...


if there is a bed available they will move the dying from a private rm at the hospital to the palliative unit for the last few hours....not sure as why, but that is the way things go here....

oh well i have put my son to bed, and get the dog to bed, so i am calling it a nite...take care...

and thank you for your words of kindness and any advice you give.... 
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