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Old 05-29-2012, 12:30 PM   #1
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Unhappy Discouraged, disheartened, dispirited...

Things are, um, not so great...

Mom is still in the rehab and basically just suffering... Itching, scratching, hot, cold, missing her Mom, calling for dead relatives, bored, irritated by every noise and movement, uncomfortable due to the PEG tube (not the tube itself, but the somewhat rough treatment it suffers at the hands of some of the aides there, despite my trying to head them off every time). I'm beginning to think we saved her life just to torture her, which was definitely NOT our intention.

The plan is still to bring her home (we're just waiting for her "Medicare days" to run out to appease my brother, which they will fairly soon due to her inconsistent performance in PT; we're looking at another week or so there), but I know it will be a lot of work and am no longer convinced it will make her any happier. Her mental status has declined steadily since her hospitalization, with her at times being nearly hysterical, and I'm not really sure why or what's going on with her. At the root of it, I continue to be haunted by the idea that we interrupted her soul's journey and are now caught in some sort of endless Faustian/Kafkaesque/Shelly-like nightmare.

We soldier on, having done what we still believe was the right thing for the right reason, but the result continues to feel oh-so-wrong. My life is basically from rehab to work to rehab to home-to-sleep and then back to rehab. I no longer engage in any hobbies or a social life and am even shirking on my rental property responsibilities (plus still taking reduced hours at work in order to do rehab in the morning). Having interviewed a few private caregivers, I've elected to just pay more for an agency since they will at least show up and do the work; the "privates" can pick and choose and run! I hang on the hope that she'll improve in the quieter home setting.

Mom's symptoms are basically all frontotemporal (behavioral/mood). I keep comparing her to "Toddlers and Tiaras'" MacKenzie ("DON'T EVER DO THAT AGA-YUN!") and, if you've ever seen this show, you'll see what I mean; she's basically a two-year-old deprived of her daily nap. I would so love to get a PET, SPECT, or even an MRI (she's had only CTs) to prove that this is where the problem lies, but the fact is that we *still* have to deal with and treat the symptoms, which consist of anger and unhappiness with uncontrolled outbursts. Distressing and embarrassing.

She's been on so many different medications to control this, her brain must be going snap-crackle-pop, but none helps... If it's indeed FTLD, none will. Currently 75 mg. Seroquel; she's no longer hallucinating or delusional, but she's totally depressed and I keep wondering what Trazadone would do for her instead.

The PEG is actually working well, and I've learned how to do it for when she comes home, but she still eats and drinks very little. I believe whatever damage/dementia is going on in there just ended the signals from stomach to brain for "hunger/thirst" just as other parts of the brain get turned off.

I guess if we'd known then what we know now, we might've chosen to let her go before... I feel somehow ashamed of what we've done to her??? I know she's miserable and has zero quality of life. What I DON'T know is if there is any hope... A friend, who was caring for her 91-year-old mother, took her home and called HOSPICE at the first sign of illness last week, for something that could easily have been treated and, I'm sure, cured... Yet the daughter instead sent out an e-mail announcing in advance which funeral home would be handling the arrangements later that week (???) and, within three days, the mother was dead. The friend then boasted that she died "at home and at peace" (unlike my mother, I fear). Is that how we do death these days; scheduling it like we do births (C-section)?

If so, then we obviously did it wrong; as my mother said, "this is a disaster." All I could do was sadly agree and hug/kiss her.

Last edited by all4mom; 05-29-2012 at 12:51 PM.

 
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Old 05-29-2012, 03:09 PM   #2
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Re: Discouraged, disheartened, dispirited...

Dearest all4mom -

Give yourself a hug. You made choices based on the best information available at the time. None of us are experts on how to handle the medical care of our loved ones as they approach the ends of their lives. There's no right or wrong way...not for your Mom, for your friend's Mom, or for anyone else. We try to make the right choices, and you had reasons to believe that your Mom wasn't ready to pass.

Your friend was probably informed that death was imminent. DH's NH encourages families to make funeral arrangements well-in-advance of the final event I've known retirees who openly talk about their plans. My Mom was terminally ill and in hospice for several months, and had made her funeral wishes very clear to us before she passed. Your friend's actions actually sounded normal to me. Yes, society these days does plan for death when it's forseeable just as we plan for birth.

Although you're discouraged, your Mom is most likely still having some quality of life. Perhaps she feels comfort from hearing your voice or from feeling your touch. Perhaps it's a soft blanket, or the sound of music. Perhaps she still enjoys the taste of something sweet, or can have happy dreams that we can't imagine still occurring during REM sleep. Perhaps she's still with you because you weren't ready to say good-bye, and this extra time is meant to benefit both of you.

You still speak about wondering if there's hope. Hope for what? Hope of helping her to get better? Hope of managing her illnesses so that she's more content? Hope of getting a better diagnosis? Hopes of bringing her home in a manageable condition? Do the doctors say whether any of these hopes are actually realistic? If a hospice evaluation indicates that she is not ready for that kind of help, a second or third medical opinion might give you some of the same benefits of having someone else to consult on her condition.

For whatever reason, you deserve a hug for your efforts to take care of her. You sound like an amazing daughter.

If you haven't already tried music, I recommend giving it a shot. Softly playing the kind of music that she enjoyed as a girl may reach her and drown out some of the noise around her at the facility. It can be very soothing. If you haven't given her a fuzzy blanket yet, I've also noticed that the berber style soft blankets are very comforting to the patients.

Remember, give yourself a hug You're doing the best you can for her, and that's saying a lot.

 
Old 05-29-2012, 03:25 PM   #3
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Re: Discouraged, disheartened, dispirited...

All4mom,
You are doing the best for Mom. I don't think it is that you did choose wrong or what... Everyone is different. Your friend probably chose no antibiotics and thus her Mom was gone in hospice.
Well about funeral, my FIL's nursing home is kind of funny. The director asked us for a name of a funeral home/place because the Vermont law says no body will stay in the home for more than 4 hours. But how come he didn't ask us the first day? The other document about Polst in VT, he asked in April. He made it sound like they forgot it the first day 2 years ago???
Well, I realized it is because my FIL is in severe stage and may die!! The guy was political but I figured out. I know the head of the NH was not stupid to "forget" to ask us these questions in day 1 2 years ago.
In any case, it is tricky in severe stage of Alzheimer's, we can do hospice or move to the west wing for sicker people and we can go to the hospital if my FIL needs food IV...

There are many methods so we just do the best. No fault here. Kudos to you because you are brave to give Mom PEG and help her all the way. Can you take off her PEG if you feel it is time for her to go? Vermont allows that. In any case, you do what you have to do and please don't feel guilty.

Take care,
Nina

Last edited by ninamarc; 05-29-2012 at 09:07 PM.

 
Old 05-29-2012, 04:50 PM   #4
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Re: Discouraged, disheartened, dispirited...

All, you did what you needed to do in the moment... and what you thought was best for you Mom. That is all we can ask of ourselves. There is no right or wrong way... and no looking back. We do not have a crystal ball that will tell us what tomorrow will bring. We just do the best we can in the moment with the information we have in that moment. I agree with Beginning... give yourself a hug and know we are hugging you as well. And please do not compare yourself to anybody else and what they do. We each have to make decisions based on what we know and who we are... not what somebody else does. It is obvious you love you Mom and only want the best for her... that is what counts

Love, deb

 
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Old 05-30-2012, 07:08 AM   #5
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Re: Discouraged, disheartened, dispirited...

Oh dear, I am sorry to hear all this. I am sending out good thoughts to your Mom AND to you too.

Please do not torture yourself over the ramifications of any decisions you made in good faith. Of course you would never want to prolong her suffering unnecessarily, but sometimes fate has twists and turns that we simply cannot predict.

Sometimes the right decision gets the wrong result - you cannot be ashamed or feel responsible. Sometimes a person we love just has a bad end that we wish we could spare them of, but we simply cannot. It is sad and stressful but the last thing you need to do is add guilt and shame to the mix.

Obviously you cannot keep up this pace for much longer. We cannot exist in crisis mode for long periods; even if the situation does not change, it devolves from being a true crisis into being a chronic bad situation.

If your Mom comes home agree with using the agency; it relieved a great burden from me because I was always certain of someone showing up.

I wonder if some hospital psychosis isn't part of this. My aunt had it both times she was hospitalized. Nothing on heaven or earth could calm her.

It is hard to make decisions about end of life on the spur of the moment if you have not thought about them before or if the person has not expressed their preferences clearly.

Everyone has to "do death" their own way, every person and every family has their own way of dealing with it.

My opinion is that for someone in the 90's with other health issues and dementia, going downhill, if that person had expressed that they didn't want to live on and on if they weren't enjoying life... if something else intervened, personally I might let nature take its course and see it as God working in mysterious ways. But those are very personal decisions and that doesn't mean that is what someone else should do.

Some people strongly feel that they should do everything possible regardless of the suffering it entails; others feel that when the suffering outweighs the benefits of continuing the situation changes.

I don't know how your Mom felt about these things but it sounds like you are in turmoil right now about what your decision might be if the situation arose to decide to treat something or not treat it.

 
Old 06-01-2012, 11:55 AM   #6
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Re: Discouraged, disheartened, dispirited...

Just three points quickly: music irritates her; EVERYTHING IRRITATES HER. It's very strange! But the more I read about damage to the frontal lobes, the more classic her symptoms sound. I would love further imaging studies to confirm this, but doctors seem reluctant to incur such an expense (order the tests) if there's no benefit; "just curious" doesn't seem to justify it if there's nothing to be done in any event. I do believe the chaos and noise of the rehab is contributing to her confusion and misery; I hope and pray that she's more comfortable and secure at home and her "behaviors" thus improve. And nina: I'm orginally from Vermont! Most of my family is still in the Burlington area... Thank you all; will keep you posted.

 
Old 06-01-2012, 12:06 PM   #7
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Re: Discouraged, disheartened, dispirited...

Here is a dumb question.. .but, is the rehab willing to put her room in a more quiet area or leave the door partially closed or the privacy curtain partially drawn to minimimze the chaos? Sometimes things are quieter at one end of a hallway or away from the nurses station or the activity rooms.

I hope things settle down for your mom and for you... please do keep us posted!

 
Old 06-01-2012, 12:08 PM   #8
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Re: Discouraged, disheartened, dispirited...

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Originally Posted by UvaPandol View Post
Here is a dumb question.. .but, is the rehab willing to put her room in a more quiet area or leave the door partially closed or the privacy curtain partially drawn to minimimze the chaos? Sometimes things are quieter at one end of a hallway or away from the nurses station or the activity rooms.

I hope things settle down for your mom and for you... please do keep us posted!
No, they are not! In fact, even as they complain about her obstreporous behavior, aides are yelling down the hall and banging chairs around... They are just a regular post-hospitalization rehab; not geared toward dementia.

This is why my HOPE is that she'll do better at home; D-Day is Wednesday!

 
Old 06-01-2012, 06:27 PM   #9
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Re: Discouraged, disheartened, dispirited...

Know it is going to take you a while to get Mom calmed down and readjusted once you get her home but I do hope she will settle for you so you will be able to keep her at home... WITH HELP! Hang in there... it's almost Wednesday

Love, deb

PS... there are not many rehabs that are geared to work with dementia patients. They just don't get it. If it became necessary for Mom to have rehab I would chose to have it done in her unit with outside therapist coming in!

 
Old 06-02-2012, 10:11 AM   #10
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Re: Discouraged, disheartened, dispirited...

Hi All -

I loved what Suzy said, so I'm including part of it here, just as another loving reminder. My stepdad had FTL and died in January. I really relate to having to make those end of life decisions. It is so, so hard, scary, painful. It's so easy to doubt ourselves at those times.

I am so sorry that music doesn't help her. Sometimes it seemed to help my stepdad, but sometimes it didn't. However, during the last days of his life, while he was on hospice, and in a coma-like state, music did seem to comfort him.

We were able to have a PET scan and so we did have a formal diagnosis back in 2009. As far as that goes, you know in your gut what it is. Seeing it on a screen, well, I don't quite have words for it. I'm not sure that is helped us. I just wanted to share that just in case you aren't able to ever get the **definitive** answer.

I'm not on the boards all the time now, but something told me to check them this morning. I saw your post and knew why the angels whispered in my ear. We are all here for you. You are not alone. Trust your gut. Even when we are doing the absolute best by our loved ones I now know from experience it is normal to doubt ourselves. I'm sending you ***love*** and ***light*** and a big ol' hug!!!!

Love -
Jan

Suzy0513: Please do not torture yourself over the ramifications of any decisions you made in good faith. Of course you would never want to prolong her suffering unnecessarily, but sometimes fate has twists and turns that we simply cannot predict.

Sometimes the right decision gets the wrong result - you cannot be ashamed or feel responsible. Sometimes a person we love just has a bad end that we wish we could spare them of, but we simply cannot. It is sad and stressful but the last thing you need to do is add guilt and shame to the mix.

 
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Old 06-02-2012, 12:49 PM   #11
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Re: Discouraged, disheartened, dispirited...

All4Mom:

I suggest that you visit a local bookstore asap and read the featured article "The Long Good-bye" in this week's issue of Time Magazine. It's about the months of care and tough decisions made during the last five months of the writer's parents lives, both of whom suffered from dementia (his Mom was 91). The writer talks about the progession of his parents' illnesses and the hard decisions he was forced to make, including a decision on a feeding tubes and DNR orders.

This article very eloquently addresses the issues that all of us are facing, including the caregiving issues that you are struggling with now.

 
Old 06-04-2012, 07:32 AM   #12
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Re: Discouraged, disheartened, dispirited...

I was able to check it out online and saw his video discussion about dying and the decision making. However I still have to buy the magazine to read about the whole thing. Basically the author gave his Mom feeding tube. My feeling is he felt that he was not informed enough or properly so he could make a better decision. In this case, he emphasizes on some medicare issue: some medical professionals don't tell the family that the prolonging process is not comfortable and etc. He appreciates that some doctors who are paid by salary (not medicare) told him the truth about the suffering before dying.
In this case, he seems to think the prolonging is not needed but he was not informed correctly so he gave his Mom the feeding tube for a short while.

Need to buy it to read more about it. Thanks! Beginning!

Hugs,
Nina

Last edited by ninamarc; 06-04-2012 at 09:55 AM.

 
Old 06-04-2012, 09:36 AM   #13
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Re: Discouraged, disheartened, dispirited...

Everyone please be careful about throwing around this term "the dying process"... Just because someone is old, just because someone is ill, and even just because someone has stopped eating DOES NOT mean he or she has necessarily entered "the dying process." We're all in the process of dying; there's a very great danger in rushing it...

My mother hasn't been in better health in years than she is right now, on the PEG tube; her infections are cleared up, she is transferring and even walking on her walker again, and her chronic conditions (heart/kidney) are stable on different/fewer medications. For whatever reason, her dementia affected her feeding, but she's clearly not "moribund"...

The dementia is a huge problem, no question (mostly because it's behavior-based), but even that is not a reason to shorten someone's natural lifespan; sorry, I'm just a'gin it!

 
Old 06-04-2012, 09:53 AM   #14
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Re: Discouraged, disheartened, dispirited...

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Originally Posted by all4mom View Post
Everyone please be careful about throwing around this term "the dying process"... Just because someone is old, just because someone is ill, and even just because someone has stopped eating DOES NOT mean he or she has necessarily entered "the dying process." We're all in the process of dying; there's a very great danger in rushing it...

My mother hasn't been in better health in years than she is right now, on the PEG tube; her infections are cleared up, she is transferring and even walking on her walker again, and her chronic conditions (heart/kidney) are stable on different/fewer medications. For whatever reason, her dementia affected her feeding, but she's clearly not "moribund"...

The dementia is a huge problem, no question (mostly because it's behavior-based), but even that is not a reason to shorten someone's natural lifespan; sorry, I'm just a'gin it!
Sorry I really mean the situation before the death. Not really about the "process" literally. The author was talking about how to die.
I agree with you that they are still alive now and it is not "dying process".
There are many steps we can do before the person dies.

Nina

 
Old 06-04-2012, 10:27 AM   #15
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Re: Discouraged, disheartened, dispirited...

I was searching online for that book, "The Long Goodbye"... Would you happen to know the author's name? BTW, he stole that title from Patti Davis's book about her father -- President Ronald Reagan -- and his ordeal with Alzheimer's Disease...

Last edited by all4mom; 06-04-2012 at 10:29 AM.

 
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