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Time for hospice?
Posted: Sunday, January 22, 2012 9:33 AM
Joined: 1/8/2012
Posts: 11

A representative from hospice is coming tomorrow to explain to me what hospice is all about and what role they would have (in my home) in mom's last days.

Mom took a few giant steps backward in July when my brother (her first born) died.  She never gets out of bed anymore (sleeping about 20 hours a day -- breaks when I wake her to change her or try to get her to eat).

She doesn't eat anything that has to be chewed.  She said she doesn't know how to eat.  When I can get a bite in her, she chews forever and I can hear her gulp to force the food down her throat.  She drinks 3 to 4 Ensure shakes a day, will sometimes eat a banana (even if it takes her all day to do it), and sometimes an orange yogurt (which can take hours to eat).

Her last doctor appt. was just before Christmas. I had to call local Dial-A-Ride because she can no longer get in and out of the wheelchair, let alone the car.  That's the best buck and a half I spent in a long time. We took her off the Namenda and Remeron and the doc said she would see her again in six months and at that time, it will probably be time to call in hospice.

I called the doctor last week to tell her about mom's non eating... she said the Ensure would sustain her, and if I wanted hospice, to let her know.  Hence the hospice visit tomorrow.  I don't know what to expect from them.

Mom talks less and less.... still puts herself (and me) into the tv.... Everybody Loves Raymond is our family... Raymond is her son... she watches the People's Court because the judge is actually speaking to mom and I cannot interrupt because it isn't polite.  Mom can still put sentences together -- sometimes they make sense, but most of the time, it's just a bunch of words that do not have anything to do with each other. I am still a stupid ass.

She's ready to die and I'm ready to let her.  I hate this disease.


Mimi S.
Posted: Sunday, January 22, 2012 9:50 AM
Joined: 11/29/2011
Posts: 7035

Hi Catnap,

Calling Hospice is great. 

Are there more than one Hospice offices that serve your area? If so, you might want to interview more than one to compare services. 

Before the representative arrives, make a list of how you want your Mom treated. Then listen to the services they provide. They may offer services you haven't thought about.

And they will make this final part of your mom's journey as peaceful and comfortable as possible.

Please do keep in touch with us.

Posted: Sunday, January 22, 2012 11:10 AM
Joined: 12/15/2011
Posts: 2283

Quote from catnap:

"She's ready to die and I'm ready to let her."



A very profound statement that if more Caregivers admitted to it a lot more Caregivers would be relieved that they have recognized the future which has stong bearing on the present.


From the description you give about your Mom inserting herself into the TV programs it is my estimation that your Mom is not ready for termination, that is, unless she has a body organ failure in the development. I have watched several Hospice patients pass and when they are ready to go the end is a lot more apparent. However, Mom's lack of desire to swallow follows a near Hospice need.  


 Hospice is an aid and bringing in Hospice will not harm, and may also help you with their opinions.

in the moment
Posted: Sunday, January 22, 2012 1:20 PM
Joined: 11/30/2011
Posts: 53

My mom is in a residential care facility.  She had a fall and had a nasty wound on her leg from the fall.  At one point, it was thought she had sepsis so hospice was called.  She was on hospice for six months to provide wound care and other things.  I was also taking mom to a wound care doctor every week.


She did not have sepsis and was doing much better.  She also has a low grade tumor in her kidney.  Hospice provided a social worker who would go and sit with my mom and I also spoke to the social worker for support.


She was taken off hospice due to her improvement.  I recently received a call from hospice asking if I would like her to be re-evaluated.  I did not think it was necessary and they will call me every six months or I can contact them if  things change.


Going on hospice does not always mean it's the end.  My mom improved and I know she can always go back on hospice if needed.

Posted: Sunday, January 22, 2012 3:27 PM
Joined: 12/4/2011
Posts: 18727

Catnap, I certainly do not meant this to be second guessing you but is your mother on any medication for depression?  I have had more that one friend loose a child and depression insued in each instance. Just a thought.


Please let us know how the hospice visit goes.

dj okay
Posted: Sunday, January 22, 2012 9:13 PM
Joined: 11/29/2011
Posts: 1840

I also spoke with the hospice social worker week before last.  Based only on my reports, she thought it was too early to put Mom on hospice at this time.


Mom is also having trouble with swallowing and takes forever to eat, chewing each mouthful forever.  We have to thicken her thin liquids or she tends to choke.  And she sleeps an awful lot.  But she is still able to walk, with a walker and an aide. 


I may try again in a few weeks if she doesn't improve...unlikely in my book.  But we'll see.


Please let us know how it goes.  I'm very curious at to the specific symptoms patients with dementia are exhibiting when they are admitted to hospice.

Posted: Monday, January 23, 2012 7:17 AM
Joined: 12/20/2011
Posts: 276

Catnap ,Good luck to you and your mom, my moms show is GoldenGirls when you post tou mom thinks cast of Ever1 loves Raymond.Bless her precious heart. So sorry at the loss of your brother and i know hospice help seems to vary from place to place. not at that point with my mom yet. But when i see her cry looking for my dad or her mom , Both Deceased, I just wonder WHY,WHY. She doesnt enjoy her life. And i understand when you say she is ready and so are you. I WISH YOU BOTH PEACE AND STRENGTH. 12 yrs. a very long time. ((((HUGS))))to you and your mom.
Beth in Indiana
Posted: Monday, January 23, 2012 7:30 AM
Joined: 12/21/2011
Posts: 95

Hi - it doesn't hurt to talk to Hospice now.  I would advise you to check out Hospice's website.  They have a list of questions that are very enlightening.  And for sure, follow your heart.  If you don't like what you're hearing, or a red flag goes off, try another group.  Have your list of what you'd like help with and compare it to what services they offer.  Ask if they have addtional ones, like volunteers who play music, etc. 


And then, pace yourself.  This can be a longer journey than you think.  Read up on signs.  It will help ease the stress by having a plan and knowing what to expect. 


Good luck - hang in there and take care of yourself.

Posted: Monday, January 23, 2012 10:44 AM
Joined: 12/21/2011
Posts: 13

Catnap, I'm thinking along the same line as Beth. I would say that hospice can be a big help, but beware, do not make it look like you are overwhelmed by all the problems or they may think that they have to take charge and they may come into your house to do what they think is good for your mother without asking you if you want it or not. They could also say she can't live home anymore and has to go to a nursing home.

They have some knowledge and some experience, but you have the knowledge of your mother and what she likes and what she wants and you will live with the effects of the meds they may give her and of the other things they will be doing. You have to be in charge and tell them if what they offer to do responds to the needs of your mother or not.
Posted: Tuesday, January 24, 2012 7:30 AM
Joined: 1/8/2012
Posts: 11

The meet and greet went fine with the hospice rep.  

According to her "checklist" my mom is in stage 7c.  That may change when the nurse comes in and they do a full evaluation.

The lady said mom could continue to take the two low dose antibiotics for her bad teeth and the bad genital herpes she gets, although they may change the antibiotic to just one and maybe in liquid form.  She takes buspirone in the evening to settle down her anxious ways... sometimes it works, sometimes not.

All in all, I liked her responses and will go with this hospice through our local hospital.  It's the same VNA who was involved with her before and also with my husband when he went through the terrible time after his cancer cure. I am calling today to set up a nurse/doctor for her evaluation.


Posted: Tuesday, January 24, 2012 9:15 AM
Joined: 11/29/2011
Posts: 521

My mother has been on Hospice for 2 years and it has been the best thing I could have done for her.  They are familiar with her and she with them.  She is cleaned three times a week and a nurse, social worker and chaplain come by often.  It is my little network in her care and my mental relief.  Call them anytime have questions and they are always helpful.  They alleviate the need to take her to doctor as they have doctors and also a Nurse Practitioner to visit if needed.  All my questions are given to them to take to doctor and she responds better to their input than mine so best of both worlds as it gets done without me bugging anyone.


As Mimi said make sure it is a good fit as they are not all created equal.  My family has been very comfortable with ours and that is as it should be.


Good luck on your choice and let us hear from you.





Posted: Thursday, January 26, 2012 10:37 AM
Joined: 1/8/2012
Posts: 11

Mom is officially in the hospice program.  Official stage is 6e.  She does drift into stage 7 but still uses too many words to be officially 7.  She doesn't have rigidity in limbs, but has primal reflex (?) in her right hand -- it is usually clenched into a fist. She is totally bedridden (has been for months) and falls over if you try to sit her up.

So far, I like the nurse.  Mom can stay on all her current meds, but may change antibiotics to liquid if she continues to chew them instead of swallowing them.  They may change busperone to something with xanax and valium (don't remember what she called it) if I want to do that. The busperone doesn't always settle her down. The nurse kept stressing what I want, rather than what they want.  I will have one of their aides come in once a week, but will continue to have my cousin's daughter come in once a week also.  Mom likes her and will let her do most of what she wants to do (like wash her hair).  She also works at the same hospice (at the hospice house, not in the patient's homes) that the program comes from (does that make sense?)  I don't want to introduce tooooo many new people that will come in and want to take off all her clothes....

That's all for now... will keep you posted on how it goes on a weekly basis with 3 people messing with her instead of just my sister and I.