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Hi all, I brought my Mom (93 with vascular dementia) to see her doctor today and I typed an update to her condition. My Mom is mostly staying in bed and doesn't want to play cards with her sister (my Aunt) because of her chronic headaches. She also doesn't watch TV like she used to (again the headaches).


Her walk changed about 2 weeks ago from a normal walk to shuffling (tiny steps). I have brought her to many different doctors for her headaches including a neurologist who tried different medication and did an EEG. She has been in the ER twice for headaches where they did a CT-Scan and MRI. No one knows the cause.


The doctor prescribed a narcotic for her today (something I asked him for last October but he refused) to see it helps her headaches and if it does perhaps she would be more interested in activities.


He did suggest that I think about hospice for her. I know she is getting worse, she fell down twice in 1 week, is very confused, etc. I guess her dementia really progressed.


From what I read about hospice the patient they work with is supposed to live for 6 months? How do I know my Mom has 6 months? I don't.


Right now I am very confused about what to do. Wait to see if this new medication helps her headaches and if her attitude changes? She is very depressed and I think she would like to go. But I don't know if she didn't feel so much pain (headaches) if she would feel the same way.


Sorry for rambling as I am upset right now. I love my Mom so much and the thought of hospice is very upsetting.


Thanks for any insight,


Jenna

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Jenna: you got a lot of great advice and support here so I won't repeat it. But here's something different: when Mom was on hospice, the support they gave ME was more than they gave Mom--and they gave her a lot! They don't just support the elder, they also support family members. The nurses, aides, therapists, and clergy all treated me like I was just as important as Mom was.

Their support (and this forum) saved my life.

I'm sorry you and your mother are going through this. {hug}
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JennaRose May 2019
Thanks MountainMoose, I could use all the support I could get.   I joined this forum about 4 years ago (the month of May I believe) when my older brother was abusing my Mom on Long Island and I felt so helpless living in Vermont. 

I traveled to Long Island many times to see my Mom and eventually sold her house and moved her in with me not only to take care of her but to get her away from my abusive brother.  This forum is a life saver!
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I really like what MountainMoose wrote: "...here's something different: when Mom was on hospice, the support they gave ME was more than they gave Mom--and they gave her a lot! They don't just support the elder, they also support family members..."

Comfort care prevents and relieves suffering as much as possible.
Comfort care improves quality of life.
Comfort care respects how a person wishes to die.

Hospice is also called comfort care. Comfort care is part of the best care we can access for a loved one who is dying. When asked, most people say they do not want to die in a hospital.
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Update June 9, 2019

I want to thank everyone who gave me really great advice when I was so scared.  Much appreciated!

Mom is back to her old self after her doctor prescribed a narcotic for her chronic headaches which has been relieving her pain.  He saw her 2 weeks after her taking this medicine and was very pleased with what he saw.   It was like night and day compared to the visit 2 weeks prior when he said to me that I should start thinking about hospice.   I can put those thoughts on hold right now.

Don't care that my Mom at 93 years old is taking low dose narcotics every day since they work and she is a happier person because her headaches (although not gone completely) are so much better.  After trying so many different medications (many from a neurologist) nothing worked for her.

Mom is eating like she used to, watching TV again, playing cards with my Aunt, etc.  She is getting dressed by herself again as well.  All these little things she is doing means so much to me. 

Just an update.  

Thanks again,
Jenna
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Jenna, You have a right to feel upset! But I truly believe that Hospice can offer support, guidance and care to assist your Mom, You and the rest of your family.

The "6 months" is a time guideline physicians use to help a patient qualify. It simply means that in your Mom's current state of physical and mental health, noting the recent declines, that her life expectancy is 6 months or less if her illness/ decline continues its current course. Hospice care is palliative, and designed to provide symptom control and management.

You are right...you don't know if your Mom has 6 months left....she might have less, or More! My Mom has been on and off hospice 3 times....she is in her 3rd, 6 month Hospice care period.
Hospice has provided a wonderful bridge between me, her caregivers at the nursing home, and her doctors. They help us all make certain she is safe, comfortable, and consistently monitor her changes in condition. Whether a person is living at home or in a facility, Hospice is a resource to help navigate all aspects of your loved one's daily health- physical, mental, emotional and spiritual, and they provide incredible support to families, keeping them informed on a regular basis.

I believe you need to consider if you want to continue to look for a cause of the headaches or not? The reason I mention this is your statement about not being sure if your Mom would feel differently if her headaches were gone? Also, if you continued to search for the cause of the headaches, would you want her to undergo the stress of treatments or surgery if needed?

If the answer is yes, then Hospice is not an option, because it is for keeping patients who are in decline as pain free, safe, and comfortable as possible...not for seeking out new "curative" treatments.

Perhaps write a list of concerns to discuss with your doctor and/ or a Hospice representative? The question that is hardest to answer, though, is the one you need to ask yourself. When do you stop seeking treatment and help your Mom live the best quality of life possible for the time she has left? It is a difficult question, and can feel like the biggest responsibility you'll ever take on regarding your Mom.

Please remember you are not shortening or ending you Mom's life by engaging with Hospice, if you choose to do so. You are doing your best to help her, along with you and the family, take the rest of this journey together, as comfortably and with as much dignity as possible.

Please know that other have gone through these same challenges you are facing, and we are here to offer support!
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JennaRose May 2019
Thanks for your kind and understand words, they mean so much to me.  Right now I have tears in my eyes as I knew one day my Mom's day would come and now that it's getting closer it really tugs at my heart. 

No, I don't want to look for the cause of her headaches.  She saw so many specialists already and no one knows anything.  I just don't want her to feel pain anymore. 

I always associated the word "hospice" with someone is who most definitely going to pass away soon (my first husband was put in hospice for incurable cancer to make him more comfortable).  

Anyway, you are right about how long my Mom has as it could be less then 6 months or more.  That's up to her.  I understand my Mom is tired of suffering from these headaches every single day from the moment she wakes up until she goes to sleep at night.  

I guess I will call hospice tomorrow and talk to them. 

The people on this site have been here for me years ago when I moved my Mom to Vermont to live with me (when my older brother was emotionally abusing her) to now.   I am more than grateful.

Jenna
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It’s my understanding that Hospice is a “no heroic measures” kind of care. Having Hospice means they will come in and monitor your mom. They will supervise her medications and provide care for her comfort. They will not order tests to diagnose her headaches. I’ve heard of people leaving Hospice Care alive. It’s not a death sentence. Her doctor most likely has the opinion that no definitive diagnoses, after all the tests that have been done, will be forthcoming.

Does Mom live with you and Auntie? If they live alone, you may want to consider a live-in health aide since Mom is a fall risk.

Accepting that our parents have become elderly and in ill-health with the inevitable on the horizon is one of the most difficult things we will ever have to do. No one can make it easier with mere words or advice. It’s a very personal journey and if you have a pastor or other religious leader, this is the time to look to them for guidance. And keep coming back here. There are wonderful people on this site who only want to help.
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JennaRose May 2019
Thanks for explaining.   Yes, my Mom lives with me and my Aunt (who moved in last January).   It's a ranch house with no stairs and it is safe as far as no throw rugs, etc.   I have night lights in the hallway, grab bars were installed in the bathroom as well as other things to make this house safe for my Mom.

Yes, accepting is going to be very difficult for me because of how much I love my Mom and never minded taking care of her because she is so sweet with a great sense of humor (the humor has left her broken brain). 

I'm not religious at all (I consider myself spiritual).

Thanks again,
Jenna
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My mother’s doctor also suggested hospice for her.
He could no longer control her pain, and he couldn’t give her the amount of real pain killers she was going to need.

little did I know that all the signs were also pointing to end of life. Hospice doctors came to the house to evaluate her...they were the first to tell me what all the signs really meant. I feel guilty to this day that I didn’t bring in hospice sooner. There were Weeks of pain that should not have been inflicted on her, if only I had known what it all meant sooner. The doctor didn’t tell me and I think he knew.
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JennaRose May 2019
Hi Katiekate,

I do see the signs which is why I typed a letter to her doctor with all my concerns and the changes I have recently seen.

Darn, I dislike the "if" word but if my Mom doesn't have a UTI then I will call hospice.    I want my Mom to be as comfortable as she could be.

Please don't feel guilty as facing the reality that we are going to lose a loved one is a very tough reality to handle.  

I used to feel guilty that when my Dad became sick that I listened to one of his doctors and brought him to a horrible hospital when I should have brought him to a better hospital which he did end up going to but by that time it was too late and he passed away there.  

We are only human with many imperfections and we can only do the best we can.

Jenna
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I'm just popping in with something you might try for the headaches - if the pain is mostly across the forehead or down her neck into her shoulders you might want to try voltaren or one of the other topical pain relief ointments, my mom found it to be helpful.
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JennaRose May 2019
Thanks cwillie, my Mom has nothing to lose by trying it.  I researched it and it sounds good.
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Jenna,
I understand the thought that your Mom might be "ready" for Hospice might have come as a shock. And it can be frightening and confusing.
Call a couple of Hospice in your area. There are 2 types Some Hospice are FOR profit some are NOT for profit.
The one I/we used was NOT for profit and I think it does make difference.
The help I got was immeasurable.
I got emotional support
I got education, how to better care for my Husband, how to safely care for him.
We had a Nurse that would come in 1 time a week, more if it was needed. A CNA that came in 2 times a week then as he declined she was here 3 times a week.
Supplies were delivered, briefs, pads, ointments, wipes, gloves, equipment, medications.

Call Hospice. See what they say. Remember you can always change your mind.
Hospice is covered by Medicare and while on Hospice Respite is covered so if you need a break they will place your Mom in a Hospice facility and care for her while you get a bit of a breather. (1 week)
They will manage pain, keep her comfortable that is the goal of Hospice.
And they will help you through this time as well.
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JennaRose May 2019
Thanks so much and you are right, I was totally taken off-guard even though my letter stated that I felt my Mom was getting worse and that I felt I was going to lose her soon.  

The hospice I would call would be for non-profit paid by Medicare.  My Mom had nurses come before when she dislocated her hip and they also brought supplies and taught me how to take better care of her (at that time she had to use a catheter which I would empty, clean, put on a leg catheter when she needed to go out, etc.).  

I dropped off my Mom's urine early this morning (I've been up since 3:00 in the morning) and I should know within 2 hours if her urine tests positive for a UTI.   The nurse told me that if it does then it has to be cultured to determine which type of UTI she has (if she has one).

So I'm waiting until I hear back until I call. 

Thanks again,
Jenna
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“I always associated the word "hospice" with someone is who most definitely going to pass away soon (my first husband was put in hospice for incurable cancer to make him more comfortable). “

Jenna Rose
This is what I meant by different levels of hospice. Your husbands condition was much different from your mom’s. Hospice also helps the caretaker. It provides a level of comfort for you as well as mom as these last months or years pass. My mom had hospice probably less than 24 hrs. Totally different experience.
Also, a good point on not looking for more doctors or tests. What I was referring to was the ability to try diff headache remedies to make her more comfortable.
You might try CBD oil. It has really helped my family members. One of which had terrible headaches but no longer has. She’s in her 50s. Had a non malignant brain tumor removed several years ago. My aunt on hospice with Parkinson’s uses it and can now communicate, is animated and has lost the shuffle. After she was placed on hospice my cousin started the CBD oil for her mom and feels like it gave her mom back to her. I take it for anxiety and back pain. It’s great. There are many great products available. Mine contains no THC.
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JennaRose May 2019
Thanks again for clarifying.   I will find out more when I call hospice tomorrow.  I heard of CBD oil for pain and that's something to explore. 

When I first heard the word hospice come out of the doctor's mouth I kind of went into shock.   Now I'm calming down thanks to the wonderful people here.

Jenna
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Jenna, I’m so sorry you are going through this! Yes the suggestion if hospice is blindsiding. But it does not, as you now know, mean your mom is at the end of life. After reading all your replies, I think the reason the doctor suggested hospice is because, after reading your letter, he feels it’s best to take a palliative approach to your moms care. No more specialists, hauling her in for tests, no more trying to figure out what’s wrong and cure it (except for things like UTIs but hospice can diagnose & treat those). It’s time to focus on comfort care-keeping her comfortable and pain free. She’ll be monitored regularly, hospice will provide any supplies she needs-incontinence supplies, hospital bed, bedside table, pain medication. They’ll provide aides to bathe her if you want. They will also support you and your aunt as well.

of course, the decision is entirely up to you. If you don’t feel it’s time for hospice, you don’t have to sign her up for it. It is a BIG decision, an emotional decision. You don’t have to rush to decide. Again, I am so sorry! At this time last year, my MIL was on hospice and I remember how blindsided we were by it!
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JennaRose May 2019
Thanks for your kind words.   I'm not going to call hospice until the results of my Mom's urine for a UTI come back.  I should be hearing from the doctor in about 2 hours from now.  

I do want my Mom to be as comfortable as she can.   I'm scared she may fall again and she may need a hospital bed instead of her regular bed.  Again, I want what is best for my Mom.
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