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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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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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I know quite a bit about ophthalmic survey, but not a medical professional in that area. Worked for ophthalmic surgeons for many years. The floaters you described kinda were a flag. Maybe not red. Lotsa stuff can go,on with eye in various chambers post cataract. Some can be extraordinarly painful. But yes, surgery at her age with combined morbidities is a stretch.

The FAST score for end stage dementia is different than how hospice might eval for something else. But I would have your mom evaluated. I mean this kindly, you are not the best observer here. Your feelings may cloud reality. It happens to all of us. Best to you.
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JennaRose May 23, 2019
Hi Segoline, I remember right after she had the cataract surgery (she opted to have 20/20 vision) she also saw white lights as well.   And I don't think she is healthy enough for surgery at 93. 

No, I am not the best observer as I am emotionally involved so I can't view my Mom the same way as an outsider could.  Where we live in the mountains there are not many doctors who could evaluate her compared to living in a city.  We would have to travel a long distance which my Mom couldn't handle.   My Mom has an app't with her regular MD tomorrow who has known her for about 3 years and is somewhat knowledgeable about dementia.

Yesterday she had a good day (ate and played cards) and this morning she ate her breakfast and to my surprise she turned on her TV which is a good sign. 
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Hi Jenna, hospice does have criteria to meet to determine if someone qualifies. Look up the FAST score.

Post cataract headaches can be indicative of retinal issues.
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JennaRose May 22, 2019
Thanks Segoline.  I did look up the FAST score and my Mom does not qualify.  Today she is having a good day where she is eating (drinking a spinach/banana smoothie I made her), playing cards with my Aunt, smiling, laughing.    I don't know what is going on.   I guess all I can do is take one day at a time. 

I will research cataract headaches and retinal issues.  I have done some reading on this before and from what I read surgery can fix this but at 93 I think my Mom is too old for surgery.  

Jenna
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Update:  Mom is negative for a UTI and I asked if her urine was cultured and it was.  Called hospice and they have to get my Mom's medical records and will call me back today (Wednesday).

I'm still not sure if my Mom is ready for hospice or not.  One day she seems better the next day she is worse again (staying in bed, not eating as much as she used to, depressed, etc.).

Who really determines if she is ready for hospice? 

I yelled at my Aunt yesterday because her daughter (my cousin) called up at 9:30 at night when my Mom was in bed and I was nodding off to sleep and the phone woke me.   I told my Aunt no phone calls after 8:00 p.m. and she understood.

I think my Aunt is in full denial about my Mom's deteriorating health and I told her straight out to face reality and gave her all the reasons why.   I know how much my Aunt loves my Mom (they have been best friends forever as well as sisters) but I don't need my Aunt making excuses when I'm dealing with all this.

Jenna
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My mom is 93 also. She has lived with me for 14 years. I love her dearly in spite of all the challenges this situation presents.

I see where you are waiting for test results. I would like to offer support from one caregiver to another of a 93 year old mom.

I wish all the best for you and your mom. Take care and let us know what happens. Hugs!
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JennaRose May 16, 2019
Thanks NeedHelp, 14 years is a long time.   I did receive the call about the test results and they said they need to re-do it because there was a leakage from the urine into the bag.   So tomorrow I will go out and pick up the kit and return it to the Hospital where the lab is.

I'm just very tired right now. 

Thanks for your wishes!  Jenna
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The criterion for hospice is a detailed process. There's no life expectancy requirements that I've seen. Hospice is not a staging place waiting for someone to die. It's mainly a place where quality and a comfortable life can be maintained because nothing more can be done for them medically to make things better and or to be healed.
Mother's doctor, medicare & hospice representatives will evaluate her and work out the details if it's time for hospice. I do believe medicare does pay for hospice.
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My mother lives in an Assisted Living Facility (ALF) and has a friend/acquaintance named Marie who also lives there. Marie has a wide variety of different illnesses which led her doctor to recommend a hospice evaluation about 2 YEARS ago. Yes, I said years. Marie has been receiving hospice services for 2 years now, and she's still alive and living at the ALF. Nobody can say when another person's time is up..........so 'end of life' is a different time span for everyone and doesn't mean your mom has only 6 months to live. Hospice has a goal which is to make everyone's life a bit easier; yours, your family's, your mom's.......it's a real family affair and it's tough on everyone. Allow hospice to provide you ALL with a wonderful service, it really is quite helpful.
Best of luck!
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NeedHelpWithMom May 16, 2019
Great advice. Very helpful to others.
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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:  I collected my Mom's urine and dropped it off this morning to her doctor and will know in about 2 hours if the urine tests positive for a UTI.   Then I will take it from there. 

As I was driving back from her doctor a thought popped into my head about her chronic headaches which was after she had cataract surgery she would call me up and complain about "exploding" headaches and seeing floaters or whatever word she used.   My Mom never suffered from headaches her entire life until she had the cataract surgery.  I did bring her to an ophthalmologist and he didn't find anything wrong.   

I can't believe I didn't buy her sunglasses to see if that would help with her headaches, duh!!

Also, I left out that starting about 2 weeks ago she has been having a difficult time standing up from a sitting positive from either her bed or the couch almost as if she has no strength at all which is a very drastic change.  She does use a rollator walker.

I'm hoping she does have a UTI as that would explain so much.  That's it for now.

Jenna
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Jenna,
Not only do we share virtual last names, but we are at similar stages with our loved ones. My husband is 79 and has vascular dementia, end-stage kidney disease, and debilitating fatigue and muscle wasting. He cannot go on Hospice until the decision is made to stop dialysis, but several doctors have mentioned Hospice to me because of his poor quality of life.

It is impossible to know what will happen in what time frame. For now, we continue with dialysis, taking one day at a time.

<hugs>
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JennaRose May 16, 2019
Hi JuliaRose,

I'm so sorry to read about your husband and you must be going through so much just watching and waiting not to mention what your husband is going through.

You are right about taking one day at a time.   Sending you and your husband many hugs.   ((((((hugs)))))

Jenna
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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 16, 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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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 16, 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'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 16, 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’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 16, 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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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 16, 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 would like to back up a little, what medical reason did the doctor give for referring her to Hospice? This is the same doctor that resisted pain medication for the headaches? Is this doctor a geriatric PC specialist? I feel like you should have a better idea of what's going on and not have been so blindsided by this suggestion if the timing is so right. Has this change in her been happening over a long time or did all of these changes happen around 2 weeks ago with her gait change? I know this is going to sound odd but has she been tested for UTI? Could she be dehydrated or bordering on dehydrated?
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JennaRose May 15, 2019
The reason was because of the letter I typed up to the doctor in which I stated all my concerns and noted all the changes I have witnessed in the past couple of months plus the doctor's assessment of my Mom.

This doctor knows my Mom the best out of all the doctors she has seen.  He has always asked her many questions and was always thorough. 

She will be tested for UTI (my Mom can not urinate in a doctor's bathroom) but she can at home and I will bring her urine to the doctor, yes, I thought it would be a good idea to rule out (or in) a UTI.  

My Mom drinks lots of water throughout the day into night.  She is not dehydrating.  

Thanks for your compassion or lack of it,
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 15, 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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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 15, 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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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 15, 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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Jenna Rose,
I am sorry your mom is having such a hard time. I know this was upsetting for you to hear.
Jenna Rose, the rule about six months is a guideline. Medical authorities have a belief that a person has a health issue that they could pass away from within six months. It doesn’t mean they will. I have an aunt (82, Parkinson’s and dementia) on hospice for about 12 months now who is actually doing better now on hospice than she was before. The word hospice has a bad reputation which is too bad. There are levels of hospice and at your mom’s age she could very well pass away in six months.
My aunt (92 vascular dementia) also takes tiny steps. Her legs are strong but she is now hugging the walls and holding onto furniture. She has ongoing therapy to help her but I see the steps getting shorter. She uses a cane. She has dementia so I know that’s the reason for the decline. She does not have headaches and feels great everyday. So the similarity ends with the gait.
Part of hospice is to keep your mom comfortable. So they will work with her to stop the headaches. It could even be some of her current medication is causing the headaches. I took my elderly father to a headache specialist after having taken him to various doctors, had the MRI, CT Scan etc. An ENT doc referred him after a visit to rule out any sinus condition.
It was a Medication! What should have been an easy fix by any of the docs took the right eyes on the situation to identify the likely culprit. Took one visit. My dad did not have dementia.
Please read the book “ Being Mortal, Medicine and What Matters in the End” by Atul Gawande. It’s good to have a guide to help us not go to extremes to keep a loved one alive when they have lost their ability to enjoy life.
Others will give you info on their experiences with hospice. I’ve had five that I can remember right now and all were considered helpful.
My aunt (92) mentioned above sees a geriatric primary once a year and has home health weekly. She also has daily aides. When you look for a hospice look for one that also provides home health. When they come out to evaluate your mom they can help you determine what level of care she would benefit from. By that I mean HH or Hospice. If she starts off with HH she can possibly stay with the same company as she progresses in her dementia. Your doctor sounds agreeable to help you get help for her.
Good luck on the headaches.
Let us know how she is doing.
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JennaRose May 15, 2019
Thanks 97yroldmom for putting my situation into perspective.  My Mom is also hanging on to whatever she can which is something new that started with the tiny steps.   And you are right, hospice has a bad reputation and I didn't understand the full meaning of it until reading the responses here.

In the past my Mom has visiting nurses after she dislocated her hip from a bad fall.  She also had physical therapists come to the house to work with her.   I'm sure this same group of nurses will be the ones to come make my Mom more comfortable. 

My Mom takes medication for high blood pressure, a-fib, thyroid and she takes vitamins.  

I will call hospice tomorrow and talk with them.   I had a feeling that her time was coming and I mentioned it to my friends.  I even started making plans for when her time comes and what I would do and where I would live as I do not want to stay in this house anymore but live in a condo where there are less responsibilities as I am getting too old to take care of a house by myself.   So I guess I kind of knew deep down but hearing it from the doctor made my inner thoughts into a reality.  

I just love my Mom so darn much!  I want her to be at peace yet selfishly I don't want to let go of her yet.  

Thanks again,
Jenna
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