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Thread started 02/27/19 8:57pm

purplethunder3
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Who here has experience with parents on their way out...

Just bought a plane ticket to go and relieve my sister--my Dad has cancer and his wife--my stepmother--has early signs of Alzheimers. I'm about to go into living hell--can someone help with suggestions? Benni--are you still here? I want to help but I'm going to have to deal with a situation I haven't had to in many years (cancer) but the Alzheimer's is throwing me for a loop... Any helpful recommendations... Thanks.

"Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything." --Plato
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Reply #1 posted 02/28/19 12:06am

EmmaMcG

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My mother died from cancer 5 years ago at the grand old age of 42. There's really not much you can do other than just be there for them. Talk to them. If they're religious, you can reassure them that they'll be OK. Basically, just try to make them as comfortable as possible. I know it's not easy but your presence alone will be a big help for them at least. I wish I had more advice for you but that's all I have. If you have any other siblings, use them for support. My brother was 18 when our mother died and he was the strongest one of the lot. I was really very proud of him for that. He looked after our little sister, who was 10 at the time. I was completely useless due to other things that had happened around that time so I was very grateful for him.
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Reply #2 posted 02/28/19 1:43am

MoBettaBliss

my Mum died last December... my advice is try to be selfless... take a minute when you need to, but don't let their illness completely define your relationship going forward

with my Mum, it took over my life for months, and i live in a different state... i spent a fortune on travel/hotels etc, but i'm really glad i did... we'd had a bit of a rocky road but we really bonded again.. i felt like she saw me for who i really was, and i gained a much better undertsanding of who she was... we shared some incredibly beautiful moments together over her last few months.. and that really was a gift

now she's gone...it brings me peace to know i stepped up and was there for her.... in that time i was the man i'd like to be... and that's kind of a big deal in situations like this... hope that makes sense

i still miss her ... terribly

i know it's hard... but look past the illness and try and connect with them in any way you can... it'll mean a lot to all of you

all the best

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Reply #3 posted 02/28/19 8:23am

PennyPurple

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It's not easy, you need to take care of yourself too. Even though you aren't close with your father, I don't think you'll regret going.

Lot's of things are said that are spoken and not spoken, at least that's how it was with me and my dad.

As far as the step mom goes, if she has her own kids let them deal with her. I can't offer any advise because my step mom and I can't stand each other.

Best wishes. If you need to talk I'm here.

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Reply #4 posted 02/28/19 3:33pm

benni

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purplethunder3121 said:

Just bought a plane ticket to go and relieve my sister--my Dad has cancer and his wife--my stepmother--has early signs of Alzheimers. I'm about to go into living hell--can someone help with suggestions? Benni--are you still here? I want to help but I'm going to have to deal with a situation I haven't had to in many years (cancer) but the Alzheimer's is throwing me for a loop... Any helpful recommendations... Thanks.


Hey purple. I'm here but end of the month stuff with work that has to be finished tonight. I will come back to this thread to tell you what I know and what you can do, but the most important thing is to take care of yourself. I've noticed that with caregivers they are all in, because they want their parent(s) to have the best care, but they neglect themselves and get run down, wore out, and then their parents AREN'T getting the best care because the caregiver can't give what they don't have in them to give.

I'll be back. The main thing to do at this point is just take each moment one at a time.

hug

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Reply #5 posted 02/28/19 4:15pm

XxAxX

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purplethunder3121 said:

Just bought a plane ticket to go and relieve my sister--my Dad has cancer and his wife--my stepmother--has early signs of Alzheimers. I'm about to go into living hell--can someone help with suggestions? Benni--are you still here? I want to help but I'm going to have to deal with a situation I haven't had to in many years (cancer) but the Alzheimer's is throwing me for a loop... Any helpful recommendations... Thanks.



i'm going thrugh that with my Mom. she progressed from alzhemiers and is living in a memory care facility. she didn't recognize me at christmas....

advice? not sure this will help but i feel for you. here is what helps me:

find out about good care facilities now while there is time.

take it slowly and be patient with yourself because its really hard and awful

enjoy every minute you have with your parents. they don't last forever sad

hope you are doing all right heart

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Reply #6 posted 02/28/19 4:15pm

XxAxX

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MoBettaBliss said:

my Mum died last December... my advice is try to be selfless... take a minute when you need to, but don't let their illness completely define your relationship going forward

with my Mum, it took over my life for months, and i live in a different state... i spent a fortune on travel/hotels etc, but i'm really glad i did... we'd had a bit of a rocky road but we really bonded again.. i felt like she saw me for who i really was, and i gained a much better undertsanding of who she was... we shared some incredibly beautiful moments together over her last few months.. and that really was a gift

now she's gone...it brings me peace to know i stepped up and was there for her.... in that time i was the man i'd like to be... and that's kind of a big deal in situations like this... hope that makes sense

i still miss her ... terribly

i know it's hard... but look past the illness and try and connect with them in any way you can... it'll mean a lot to all of you

all the best



rose very sorry for your loss

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Reply #7 posted 03/01/19 5:59am

benni

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purplethunder3121 said:

Just bought a plane ticket to go and relieve my sister--my Dad has cancer and his wife--my stepmother--has early signs of Alzheimers. I'm about to go into living hell--can someone help with suggestions? Benni--are you still here? I want to help but I'm going to have to deal with a situation I haven't had to in many years (cancer) but the Alzheimer's is throwing me for a loop... Any helpful recommendations... Thanks.


purple, in the early stages of Alzheimer's most people still function independently, but there are signs that their memory is failing. They may forget someone's name. They may forget what they were doing, or were going to do. They may forget where they put their keys and they are holding them in their hands. They can be like this for years. Usually, when they are in the early stage of Alzheimer's they don't need a lot of assistance. While you are with your step-mom, you might observe her and see where her memory deficits are most prominent. Is she forgetting words? Is she forgetting to take her medications? What is it that she is having a hard time remembering?

Once you figure out where her memory deficits are, then you can devise a plan to assist her in her memory, (like sticky notes around the house for what things are). I had a client that was in the early stages of Alzheimer's but it was starting to advance and he couldn't remember what the names of household items were. He'd forget "lamp", "couch", "vacuum cleaner", etc. So his family put yellow sticky notes on everything that he might need to use with what that item is: LAMP, COUCH, etc. This helped him to be able to communicate to others, "Can you turn on the (looks over and sees the sticky note) lamp?"

Medications are the big thing. Some meds are vital that they are taken at the same time every day. Getting a pill box (different colors for different times of the day, 'pink for morning pills', blue for 'bedtime pills', 'yellow for pills to take with meals or afternoon pills', etc.) or getting one that has 3 different boxes in it already, that are set up for morning, afternoon, evening. I've seen families use both. Someone would set out the pink box for the morning and kept all other pills put up, and they would set put out a note saying, "Today is Friday", so they would know, they take the Friday pills only and if the Friday pills are gone, then they already took them. The more high functioning patients with Alzheimer's, they'd do the big pill box with the morning, afternoon, and evening set up, and would leave the note, "Today is Friday".

You might want to sit with her and talk to her about what she would like to have happen to her as the disease progresses. Planning now is key, because she can still tell you what she wants to happen to her, can still make those decisions. This will allow your step-mom to feel like she still has some control, and that is vital at this stage, because right now, she has to be feeling like she is losing control. Losing independence is never easy for anyone who is sick or who is developing dementia, or just getting older. For someone with Alzheimer's, these beginning stages (and even mid stages) can be very frustrating for them. Like, forgetting the word "lamp". They struggle to remember that word, they know what it is, and what it does, and they know they have used it all their lives, but then to suddenly struggle to remember what it is called, and trying to get that word out to someone else, their frustration level increases tremendously. They are mad at themselves, they are mad at the world, and they feel so helpless and hopeless because they just can't recall that word.

It's hard watching someone struggle to come up with the word and our first instinct is to jump in and save them, give them the word, but I've found sometimes it's best to tell them that it's okay, to take their time, but also to ask them at another time, when they aren't struggling, "When you have a hard time remembering a word, would you rather me tell you what the word is, or to remind you to relax and not struggle to remember, but to take your time and let the word come to you? How do you want me to handle that situation?"

A good resource for caregivers of people dx'd with Alzheimers is the Alzheimers Association. They have a lot of information, a lot of caregiver resources, and they offer respite vouchers (they'll pay someone to come in and help care for your a patient with Alzheimer's to gve the caregivers a much needed break).


https://www.alz.org/

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Reply #8 posted 03/01/19 6:08am

benni

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One other thing to remember: She may ask you the same question several times a day. It gets very frustrating for family members to repeatedly answer that same question over and over. But just try to keep in mind, no matter how frustrating it gets, that she honestly just doesn't remember asking you before or what you said.

My ex-grandma-in-law had Alzheimer's and one of her son's passed away. She was living with my ex-mother-in-law (I call her the mom of my heart - fantastic woman), but Big Mama couldn't remember that her son had passed away and every day would say to my MIL, "Jr hasn't called me in awhile. Can you call him and tell him I want to talk to him?" And every day, mom would have to explain to her that Jr. died, and every day, Big Mama would go through the shock and grief of losing her son. It was heart wrenching to watch. I finally told mom, after about 6 months of this (because it wasn't easy on her either), that this was not helping her to heal from her own grief of losing her brother, and then to watch the devastation of her mother "finding out for the first time over and over again that her son died" to just start telling Big Mama, "Yes, mama, I'll tell Jr. to call you." She tried that and Big Mama was happy with that response, mom didn't have to watch her grieve again and again, and of course, later "Jr. hasn't called me in awhile. Can you call him and tell him I want to talk to him?" She couldn't remember Jr. had passed, she couldn't remember that she'd already asked that question, and mom was able to tell her each time, "Yes, mama, I'll call Jr. after I finish the dishes". Big Mama would forget she ever asked and it was dropped until the next time Big Mama was thinking about Jr.

You may need to come up creative ways to answer in situations that are difficult, in order to cause them (and you) the least amount of stress.

[Edited 3/1/19 6:10am]

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Reply #9 posted 03/01/19 6:20am

benni

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Regarding your dad, there is, of course, the American Cancer Society, which has a lot of information and good resources. But check in your area to see if there is a Cancer Association. I know that we have them in a lot of the larger areas here in South Carolina, and they will pay gas mileage for driving someone back and forth for treatment. OR they may give you nutritional supplements (one case per month). Or for women, they have wigs available for women who have lost their hair during treatment. They may even help with the cost of some medications. BUT the Cancer Association can only help with one thing, so you need to determine what you need most, (help with medication cost, help with gas mileage for going to treatment, nutritional supplements, etc.).

I'm not sure how bad your dad's cancer is, but if he qualifies for Medicaid, he may qualify for in-home services and some other services. We have Community Long Term Care in South Carolina. In order to qualify for it, you have to meet nursing home level of care. What their goal is, is to provide services to people, that meet the level of care to go into a facility, who want to remain at home. Providing services in the home is a lot cheaper on the individual states, than to place someone in a nursing home, so most states have a similar program. You can call the local Medicaid Eligibility office in your area and ask if they have a program that offers in home care for elderly or disabled individuals. We also offer services to individuals diagnosed with HIV/AIDS, on Vents, and disabled children. Those services include: an aide to come in for so many hours per day, nutritional supplements, incontinence supplies, home delivered meals, pest control, ramps, home modifications for safety and accessibility, or they may pay a family member to care for their relative at home.

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Reply #10 posted 03/01/19 6:45am

onlyforaminute

Went thru it with my grandmother, we were at her bedside when she died. Both my parents already passed, neither went thru dementia. Dealing with both my elderly aunt and uncle both do have dementia, its a fight and a half.
Year of Return 2019
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Reply #11 posted 03/01/19 8:10am

RodeoSchro

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Cancer - I lost both parents and my father-in-law to it. The only good thing is that you get to say goodbye, and you have some period of time to express your love. Do that as often as possible. Hospice does an incredible job keeping cancer patients comfortable in their last days, they are truly angels.

Alzheimer - Never had to deal with it but it sounds like a very, very tough deal. I'll definitely keep you and your stepmother in my prayers.

Second Funkiest White Man in America

P&R's paladin
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Reply #12 posted 03/01/19 9:11am

peggyon

Hi Purple-My heart goes out to you.

I am not certain if your dad qualifies for Hospice, but if so and he is in agreement, they can offer

additional support, ie., RN's, Social Workers, Nursing Assistants, volunteers etc.

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Reply #13 posted 03/01/19 9:42am

benni

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In order to qualify for hospice, her dad has to have stopped all treatment for his cancer and the doctor has stated that there are no more treatment options available for her dad. I'm not sure from her post if he is in treatment or not, which is why I didn't suggest it myself. (I used to work as a hospice social worker, too.) He may qualify for palliative care in the interim. The difference is that palliative care can begin while the patient is still receiving treatment and even at the beginning of the diagnosis, if the patient needs that assistance. So, depending upon where her father is in the treatment process will determine which service she might consider.

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Reply #14 posted 03/01/19 9:55am

NorthC

I watched my father die with my mother next to me. A few years later she also passed, in a hospital in the middle of the night, so I couldn't be there. In both cases I knew the end was coming, which makes it a little easier to bear. We all know that we will have to face this at some point in our lives.
All I can say is, try to be there for each other as much as you can.
[Edited 3/1/19 9:59am]
Never try to discourage thinking, for you are sure to succeed.
Bertrand Russell
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Reply #15 posted 03/01/19 9:58am

purplethunder3
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Thank you all for sharing your experiences and suggestions. It's a hard but inevitable part of life that so many of us have to deal with...

"Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything." --Plato
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Reply #16 posted 03/01/19 10:12am

purplethunder3
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benni said:

In order to qualify for hospice, her dad has to have stopped all treatment for his cancer and the doctor has stated that there are no more treatment options available for her dad. I'm not sure from her post if he is in treatment or not, which is why I didn't suggest it myself. (I used to work as a hospice social worker, too.) He may qualify for palliative care in the interim. The difference is that palliative care can begin while the patient is still receiving treatment and even at the beginning of the diagnosis, if the patient needs that assistance. So, depending upon where her father is in the treatment process will determine which service she might consider.

My father was just diagnosed with Pancreatic cancer and will see a doctor about targeted chemo on Tuesday. There are, of course, health issues related to that; if he has Pancreatic cancer, he probably doesn't have more than a few months. The biggest issue is my step-mother who I don't think has been diagnosed for Alzheimer's at all... She has short-term memory loss at this point from what I'm told, stays up all night, and doesn't want to leave the house. Thank you for suggesting the organizations that you did; we will certainly look into all services that they qualify for.

"Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything." --Plato
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Reply #17 posted 03/01/19 10:56am

XxAxX

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purplethunder3121 said:

benni said:

In order to qualify for hospice, her dad has to have stopped all treatment for his cancer and the doctor has stated that there are no more treatment options available for her dad. I'm not sure from her post if he is in treatment or not, which is why I didn't suggest it myself. (I used to work as a hospice social worker, too.) He may qualify for palliative care in the interim. The difference is that palliative care can begin while the patient is still receiving treatment and even at the beginning of the diagnosis, if the patient needs that assistance. So, depending upon where her father is in the treatment process will determine which service she might consider.

My father was just diagnosed with Pancreatic cancer and will see a doctor about targeted chemo on Tuesday. There are, of course, health issues related to that; if he has Pancreatic cancer, he probably doesn't have more than a few months. The biggest issue is my step-mother who I don't think has been diagnosed for Alzheimer's at all... She has short-term memory loss at this point from what I'm told, stays up all night, and doesn't want to leave the house. Thank you for suggesting the organizations that you did; we will certainly look into all services that they qualify for.


my father passed from pancreatic cancer in 2001. it is a terrible disease. your mom's short-term memory loss may be related to stress and sleep deprivation. it's a lot to deal with, but maybe she could be persuaded to see a doctor. hang in there you. rose

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Reply #18 posted 03/01/19 11:14am

purplethunder3
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XxAxX said:

purplethunder3121 said:

My father was just diagnosed with Pancreatic cancer and will see a doctor about targeted chemo on Tuesday. There are, of course, health issues related to that; if he has Pancreatic cancer, he probably doesn't have more than a few months. The biggest issue is my step-mother who I don't think has been diagnosed for Alzheimer's at all... She has short-term memory loss at this point from what I'm told, stays up all night, and doesn't want to leave the house. Thank you for suggesting the organizations that you did; we will certainly look into all services that they qualify for.


my father passed from pancreatic cancer in 2001. it is a terrible disease. your mom's short-term memory loss may be related to stress and sleep deprivation. it's a lot to deal with, but maybe she could be persuaded to see a doctor. hang in there you. rose

So sorry about your father and mother. Thanks for the support!

"Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything." --Plato
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Reply #19 posted 03/01/19 2:53pm

PliablyPurple

It's early in the stages of Alzheimer's, so I would get on all of those things that are supposed to be good for the brain. Walking, reading, doing crossword puzzles, word searches, etc., dark chocolate is suppposed to be especially beneficial to Alzheimer's patients. Make sure not to give too much of the chocolate...do your own research, but I have read to aim around 10-14 grams a day. Leafy greens, berries, fish strong in omega 3's...social interaction. At some point, reading and crossword puzzles might not be an option, maybe think about easy card games like solitaire and the word searches.

Routine can be a big deal to Alzheimer's patients, so any changes like the aforementioned pill box, I would do as early as possible to avoid any extra pushback or unnecessary stress later on. Driving is a big thing to take away from someone if she's a driver, but it has to be done at some point. Again, earlier the better. It's a tough spot to be in, but I would rather have that conversation than one with the police telling you she's not been found yet. Check out local community center activities for social interaction. Of course, at some point, no more cooking for themselves.

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Reply #20 posted 03/01/19 3:14pm

PennyPurple

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Where I live they have a program called Meals on Wheels, they come in and deliver hot meals 3 times a week for a nominal fee. You might want to check into something like that and if it's of interest set it up while you are there.

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Reply #21 posted 03/01/19 4:05pm

kpowers

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My mom is in hospice now, kidney failure
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Reply #22 posted 03/01/19 8:03pm

PennyPurple

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kpowers said:

My mom is in hospice now, kidney failure

Oh no, so sorry to hear this.

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Reply #23 posted 03/01/19 11:49pm

kpowers

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PennyPurple said:



kpowers said:


My mom is in hospice now, kidney failure

Oh no, so sorry to hear this.


Thanks, she's been sick for a long time now
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Reply #24 posted 03/02/19 6:20am

XxAxX

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kpowers said:

My mom is in hospice now, kidney failure

sad rose rose rose

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Reply #25 posted 03/02/19 8:25am

benni

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purplethunder3121 said:

benni said:

In order to qualify for hospice, her dad has to have stopped all treatment for his cancer and the doctor has stated that there are no more treatment options available for her dad. I'm not sure from her post if he is in treatment or not, which is why I didn't suggest it myself. (I used to work as a hospice social worker, too.) He may qualify for palliative care in the interim. The difference is that palliative care can begin while the patient is still receiving treatment and even at the beginning of the diagnosis, if the patient needs that assistance. So, depending upon where her father is in the treatment process will determine which service she might consider.

My father was just diagnosed with Pancreatic cancer and will see a doctor about targeted chemo on Tuesday. There are, of course, health issues related to that; if he has Pancreatic cancer, he probably doesn't have more than a few months. The biggest issue is my step-mother who I don't think has been diagnosed for Alzheimer's at all... She has short-term memory loss at this point from what I'm told, stays up all night, and doesn't want to leave the house. Thank you for suggesting the organizations that you did; we will certainly look into all services that they qualify for.


Pancreatic cancer is a b*tch. I'm sorry, purple. It is rough.

Here are some resources that may help:

https://www.cancercare.or...assistance

(If he qualifies they can help with treatment related costs, such as transportation and home care, and another program to help with co-payment costs. They also provide a link to some other resources available.)

The Pancreas Foundation has a lot of good information, but they also have a good list for available financial resources (because out of pocket expenses can get crazy):

https://pancreasfoundatio...-websites/


Make sure to have plenty of Ensure or Boost (nutritional supplements), because with the chemo it's going to be difficult for him to eat and get enough nutrients.

Here is an online support group that might be of benefit for you or your dad. I've found that online support systems have a wealth of information to share, things that worked for them, things that helped the family cope, etc.:

https://www.smartpatients...tic-cancer


Here is a list of veggies that are said to be good for people with pancreatic cancer:

https://www.pancan.org/ne...-patients/

Regarding your step-mom, the staying up all night worries me a bit, because I'm wondering if she is "Sundowning", which is often related to dementia. Does she seem to get more confused at night? More irritable? Does she seem to pace more at night?

purple, I'm sending you a lot of love. Make sure to take care of you during this. And if you can, get more family involved, sharing the responsibilities helps caregivers tremendously. (Though, I've often found that it tends to fall more on one person, but if you have a close family, others may want to help, so don't be afraid to ask them.)

[Edited 3/2/19 8:34am]

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Reply #26 posted 03/02/19 8:28am

benni

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kpowers said:

My mom is in hospice now, kidney failure


I'm sorry, kpowers. hug I know it's hard to watch everything she is going through. Lots of love and prayers your way.

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Reply #27 posted 03/02/19 10:01am

luvsexy4all

my mom was murdered .,...anf guilty party wont be legally prosecuted

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Reply #28 posted 03/02/19 10:41am

kpowers

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luvsexy4all said:

my mom was murdered .,...anf guilty party wont be legally prosecuted

So sorry to hear that sad

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Reply #29 posted 03/02/19 10:42am

kpowers

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benni said:

kpowers said:

My mom is in hospice now, kidney failure


I'm sorry, kpowers. hug I know it's hard to watch everything she is going through. Lots of love and prayers your way.

thank you

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