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 Mom has a mass in her lungs 
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Mom has a mass in her lungs
A couple of months ago, a caregiver in my mom's memory care facility noticed a lump on her neck. We took her to a doctor, then a specialist, who recommended that we wait a month to see if it went down. He thought it might be a hematoma in her neck muscle as a result of a fall she had in November. It didn't go away, so he recommended a CT scan. Last Friday she had a bad cold with a high fever the night before, but her temp had gone down to normal. We took her in for her CT scan that day. Her fever went back up that afternoon (approx. 100) and has remained, and her "cold" has hung on. We noticed over the weekend that she was unable to cough, but we could hear that she was very congested in her chest and really needed to. She kept trying, but all she could produce was a rattling wheeze. She's not eaten well since getting this cold--maybe takes a few bites, with help, in an hour's time. Today we received a call that the CT scan on her neck revealed a mass in her chest. They haven't finished reading the results to determine what the lump in her neck is. They want to do a chest CT now. Meanwhile, she has an appointment in about 1/2 hour with her regular doctor to get a prescription for a nebulizer and cough medicine. My dad and aunt are taking her in because I can't get away from work today (on a break now). They will ask about getting a chest CT scan. It's hard to know what to expect, whether to treat for pneumonia, etc. We definitely won't put her through cancer treatments. There's no point in that. When the doctor who first looked at the lump in her neck said, "I don't want to sugarcoat this. It could be very serious," I almost wanted to laugh because of the ludicrous-ness of getting cancer on top of LBD. I said, "You do know she already has a terminal illness, right?" I don't know if I'm expressing myself well here. It's just that he was concerned about my feelings about the possibility that she has cancer when I've already been going through the stages of grief with her LBD. I did tell my dad to ask the doctor about hospice today, and he said he would.


Tue Feb 28, 2012 2:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mom has a mass in her lungs
I fully understand your feelings. Cancer is still taken 'seriously' as a terminal illness while dementia is not. You and your mom will be in my thoughts and prayers as you negotiate this insult to injury. God bless!

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Feb 28, 2012 3:49 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom has a mass in her lungs
Thinking of you and your family at this time. I pray that you can stay as strong now as you always have been, especially now with this awful extra burden to carry. God Bless, and know that we are all here for you,
Ger xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Feb 28, 2012 5:17 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Mom has a mass in her lungs
sorry to hear of the new complications with your mom..... i hope that the docs or hospice, are able to relive some of the stress you are feeling right now.. you will all be in my thoughts..

cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Tue Feb 28, 2012 6:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Mom has a mass in her lungs
I hope that your mom can be kept comfortable and that you all have support to go through these very trying times. Remember to take care of yourself so the stress doesn't make you ill too. Big hugs, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Feb 28, 2012 9:52 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Mom has a mass in her lungs
Today the doctor did blood work and had a chest x-ray done. Mom had a hard time taking a deep enough breath to get a good picture, but they did finally get one. The doctor wasn't able to tell anything just from looking at it initially, but she will get back to us after she gets more information. She said she might need us to go ahead and get that CT scan of her chest. Meanwhile, she ordered a nebulizer treatment and put her on antibiotics. My aunt said she didn't get my dad a choice about the antibiotics--just said she'd order them, and Dad didn't question it. I'm confused about whether this means her pneumonia will be cured (if she has it), prolonging her LBD suffering (trapped in her nonfunctioning mind and body), or is it just to prevent a painful death? Dad asked about hospice, and the doctor said it's not time for hospice yet, but it's time to start talking about it. Not sure what that means. Dad wants to move her home to die with a full-time caretaker and hospice support, but how will we know when it's time for that?


Tue Feb 28, 2012 10:57 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mom has a mass in her lungs
Perhaps you can wait to know the results of the chest CT scan...? Usually an xray indicates pneumonia.

In the experience with the local support group, at least half survive the first bout of pneumonia. If the second bout of pneumonia closely follows the first, most do not survive that. A few in the local group (where the dementia is mild) have chosen not to have the first bout of pneumonia treated as they view it as a peaceful way to exit the struggle.


Wed Feb 29, 2012 12:00 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 758
Location: LA
Post Re: Mom has a mass in her lungs
.SandwichMom, our doctor also routinely gave my husband, Mr Bobby, the antibiotics and the gentle breathing treatments for his pneumonia. First time pneumonia. Mr Bobby passed away within a week's time. I could not have asked for an easier passing. He just took fewer and fewer soft breaths and then there were none.

Dorthea


Wed Feb 29, 2012 12:41 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Mom has a mass in her lungs
If I were you, I'd ask your local hospice for the pamphlet about the last months, weeks & days before dying. Since hospice has very specific criteria before they provide services, perhaps her dr. thinks she will not quite meet those criteria at this point. That can change quickly, though. I think there was only about a week between my dad's "flunking" hospice and getting admitted the next week. I am a person who likes to have the data, likes to know what to expect in the future. I wish I'd gotten the hospice pamphlet a year before I even knew it existed - it would have helped me understand more about the changes and timing re: my dad's last months. All the best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Feb 29, 2012 10:20 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Mom has a mass in her lungs
There was a time, before we even knew about LBD, when Mom made it clear to her doctor that she wanted no more medical tests unless the test was clearly something that would aid in maintaining her quality of life. She was in her early 70s at that time and reasonably healthy. At first, I hated that Mom wasn't getting every recommended test and treating every inconvenience. I've learned, though, that quality of life is more important than quantity. By avoiding poking and prodding and x-rays and scans, Mom's last decade was an acceptance of her age and indicative of her comfort with her age and what would, eventually, follow.

There were no antibiotics for Mom's pneumonia, and that might have helped in speeding her passing. She did have a couple of nebulizer treatments on the first day, when she was still alert. But once she was too tired to sit up, those were stopped.

Sometimes, I think, we are given other diseases to give us an opportunity to slip away before other, more devastating, illnesses like LBD make our lives a form of purgatory. In Mom's case, there were a few before she got pneumonia. She had a blood clot that went to her lungs. She could have passed then, but we weren't ready. She broke her shoulders. I don't know if that was an opportunity or not, but she ended up going through a long surgery and recovery (during which she was given Haldol against our expressed wishes) because we felt it wasn't time yet. Then she was near a diabetic coma, and I rushed her to the ER. If I hadn't, she might have had the opportunity to die at home in a gentle way, in her own chair or bed. At that point, I had to admit I could no longer care for her at home and she entered a dementia unit. Maybe that helped me with letting go because the next event, pneumonia, finally gave her release before the LBD took the rest of her motor control. And that was a huge blessing.

Do you know what your Mom wants or would want? Are the tests and additional diagnosis important to her? Does she want her life preserved, regardless of condition? If the answer to the last two questions is "no," you might want to halt the tests and talk with hospice and a palliative care doctor about any further measures. (In Mom's case, her family doctor told us to work exclusively with the palliative care doctor, as he knew the subject matter better than she did. And she had made a special study of geriatrics.)

For me, there came a point where it didn't matter what Mom died from - only that she was released soon with as little pain or panic as possible. I hate to admit it, and I didn't do it, but I was starting to consider giving Mom an overdose of one of my own medications, which slows the heart and would have stopped it in an overdose. Please understand that I considered this for Mom, not for me. She was starting to lose motor control in one of her hands. Walking was almost impossible, as was talking. I knew that letting the LBD progress much further would be even more devastating for both Mom and for our family.

Talk with hospice and with a palliative care doctor. If you believe that all of this testing, etc, is too hard for your Mom, it may be time to stop it and help her transition. Think about it.

Please keep in mind that everything is still fresh for me and I may be overstating some things. Doing what our loved one wants, whether it be helping them pass or fighting tooth and nail to keep them breathing, is very hard. Especially if we aren't ready. Look at what your mom would want and what your family can handle. If you're not ready to let go, do whatever you need to to keep her with you. But if you are able to let go, and that is what your mom would want, get help to follow through.

I now firmly believe that additional illnesses aren't burdens so much as they are opportunities. But if you aren't ready yet, don't take the opportunity. There will very likely be others.

Best wishes.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Feb 29, 2012 2:07 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Mom has a mass in her lungs
Thank you for your advice, Kate. I know you speak from recent experience. I do think I'm ready to let her go, for her sake and my dad's. I see his health declining as a direct result to the stress Mom's illness causes him. I'm not sure he's quite ready to let her go yet, though. We've talked about what to do, and I told him I'd support him whether or not he decides to treat the pneumonia, but I can't support cancer treatments if it turns out she has that as well. He's agreed to that. We have advanced directives that she signed saying no feeding tube, but they're a bit unclear about what she'd want in this situation. Based on conversations with her, though, we both know that she would want to be allowed to die. She can't talk, walk, needs help eating, bathing, dressing, toileting (although mostly incontinent), she sleeps all the time, can't "focus" visually (neurological problem, not vision), can't do puzzles or crafts, etc. She used to be a nurse, and Dad remembers her telling him that pneumonia was dementia patient's best friend. Dad told me this morning that her doctor wants a better CT scan of her neck and chest because she really wants to know what is going on, but she won't treat anything "aggressively." It's mostly comfort measures that she's taking. Although the antibiotics might cure the pneumonia, she doesn't see it as an effort to prolong her life but something to help her be more comfortable. The message we're getting is that maybe it will prolong her life but not for long, and that's not her intention for giving the antibiotics.


Wed Feb 29, 2012 3:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Mom has a mass in her lungs
One of my elderly relatives insists on "no more tests". She knows that she will NOT have any more surgeries or other invasive procedures and is very concerned about the cost to taxpayers and insurance payers for unecessary testing. Her philosophy is "if I'm not going to do anything about the results, why waste everyone's money?" Although not the most important aspect in situations like this, I do feel the same way about my own health & health care. So did my dad, and he put a stop to almost all testing at age 80, well before we knew anything about PD or LBD. If he'd fallen out of his wheelchair, broken bones and needed an xray to have something set, that would have been a different story, but putting an elderly dementia patient through unecessary testing wouldn't be an option for many of us. There's a lot to consider and make decisions about. Good luck. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Feb 29, 2012 6:36 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Mom has a mass in her lungs
Sounds like you have a good handle on things. I'd like to suggest one more thought.

I'm assuming that your parents have been together for quite some time. Having never married,I am only speculating. But my observation is that couples tend to "grow into" each other. A psychiatrist might call it codependency. I think, though, it is a good dependency. Much of your dad's quality of life may be wrapped up in caring for your mom. You may not see him improve if and when your mom passes. So it is especially important that he be ready to let go. To say that last "I love you. See you later."But though we don't like it losing a parent is an acceptable part of life. I imagine, though, that losing your life partner is different - like you are losing half of your own life. If possible, helping your dad be ready or at least accepting might be even more important than your mom's wishes.

I know you will do what is best. It will come from the love your family shares and so will be right.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Feb 29, 2012 9:23 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Mom has a mass in her lungs
Mom had another CT scan scheduled for late Friday morning but fell and needed to go in earlier for stitches on her eyebrow. She may also have a broken finger or hand. It swelled up the next day. Dad is waiting to see if it's still swollen today before taking her back in for an x-ray. She says it doesn't hurt. The antibiotics and nebulizer treatments seem to be helping a lot. The next CT scan revealed a sinus infection and partially collapsed lung, but not the "mass" they saw in the earlier CT scan. Still, when the nurse called to give Dad the CT scan results, she told him the doctor recommends hospice. We're not sure why since she doesn't seem to have pneumonia after all. I do see the signs that she's nearing the end, so I'm not surprised. I just wonder what exactly she's basing it on and if she can tell us weeks or months. Dad wants to move her home with a full-time caregiver when it looks like a few months or less. It will involve a bathroom remodel, though, unless she just gets sponge baths.

I almost canceled my son's 10th birthday party last weekend because Mom was so bad we thought she could die last week, but now I'm glad I didn't. The birthday party is behind me, and only two kids bled, one of them mine :shock: . It's hard to plan things not knowing when I'll have an emergency with Mom on my hands, but I have to keep moving forward.


Mon Mar 05, 2012 2:08 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom has a mass in her lungs
You are so right. We can't keep putting our lives ( or those of our children ) on hold because of the 'what ifs '. I had been doing that for a long time, until I realised how much time had passed whilst I was waiting for the 'what ifs' to happen. Try to carry on with your life as close to normal as you can manage.
You all have been going through a lot lately. I hope things settle down for ye soon. Good luck and keep us posted,
Ger xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Mar 05, 2012 2:14 pm
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