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Any positive advice on coping with Mom's end of life hospice care? Prior to her moderate to severe dementia diagnosis and malnutrition, Mom was very narcissistic, manipulative and verbally/emotionally abusive most of my life. I did many years of psychotherapy over the decades. There was no pleasing her and so I reduced visits and phone calls. However, by default I became her POA as the sole daughter (brother lives across the country). For seven years my husband and I have been assisting her while in IL and then had to place her in a NH due to several chronic medical conditions. On a daily basis we have been interacting with staff and acting as her health care advocate, now hospice advocate. She turned nasty during many visits and phone calls; but now here I am being the dutiful daughter and helping her in the last weeks of her life. She does treat us better but she doesn't have the energy nor the cognition to continue her maltreatment. I want to do the right thing and offer her the gift of a peaceful, serene and dignified relationship till the very end.
Honey, that ship has sailed. She decided she didn't want to be a nice mother, so you ended up with a jerk of a mother. I think you should have her placed and visit as little as possible. My NPD mom one day was asleep when I arrived and before she could think she told me thank you for what I had brought. She realized she had thanked me and started acting bad again. I think deep down they are too stubborn to be nice unless they are caught off guard. You can't help an NPD to have a dignified relationship. You can only grieve the fact you never had a good mom and the one you did have will leave this earth bitter as always. Once you come to terms with that things get better. Also, if your mom is not on anxiety meds, look into that. They have calmed my mom a lot. She is still mean, but the agitation is gone which helps.
Thanks everyone for your input. Mom is 89 and has been living in SNF for 5 years. After several diagnostics and comparative tests, it has been determined that Mom is a candidate for hospice due to her rapid weight loss and subsequent malnutrition.
I'm sorry MissGypsy. I wish you peace on this journey. At this point, don't overthink anything, just spend time by her side for yourself and for her. Trust the hospice nurse and care team to provide comfort for your mother, and for you as well, if you wish.
That's a lot of weight drop in a short span of time. I'm not a medical professional but based upon my experience with my MIL (passed at 90 in LTC) it's a sign of change of some kind. Has she been tested for diabetes?
As my MIL continued to lose weight (10 lbs over a few months) they facility recommended hospice. Within 1 week of getting hospice in place, she passed peacefully -- we have no idea from what, nor does it matter at this point.
More context about your Mom's metrics would be helpful for input about whether this is worrisome or if action is warranted.
This is not uncommon. Our ability to taste fades as we get older, but tasting sweet things seems to last longer. Someone with dementia Is not going to think about eating what is healthy. They will gravitate toward what tastes good to them and what is easy to "grab". I saw this a lot when I worked with those afflicted with dementia. I would always try to offer something healthy that might appeal to them, and that they could access easily if I wasn't there. Peanut butter and jelly sandwiches or chicken salad sandwiches cut in four. String cheese. Tiny meatballs in a little sauce. I know some families who make very healthy good- tasting protein shakes that include peanut butter, bananas, fruit, protein powder etc. Someone with dementia usually prefers to graze more than eat big dinners. Medical staff needs to evaluate further on what's behind weight loss.
Junk food eating can be a comfort thing as well - it could also be fir energy is she sleeping/getting enough sleep depression can contribute to it Not enough water maybe gave a look at those things as well
What is her condition? What staff? Is she in a skilled nursing facility? Assisted Living? Where is she getting the junk food? When did this start? There are a lot of good ideas and answers, if you could provide more information.
Has she been checked for colon cancer? My mom was losing weight and we gave her boost and protein drinks, but when she finally complained about intestinal pain it turned out she had stage 4 cancer and was sent to hospice. They don't treat advanced cancer in older folks, just keep them from suffering in pain. My sister-in-law was found to have stage 4 lung cancer. It seems that the regular tests they do don't really screen well for cancer and by the time the person with dementia is bothered by pain in can be quite advanced. Good luck with finding an answer.
You may need to look at your definition of junk food. Boost is junk food. I wasn’t aware of this until I read the ingredients and saw how much sugar and seed oils are in it. A protein shake with actual fruit and yogurt and protein powder would be better, but also more effort and maybe not feasible. (My mom gave my dad with dementia boost as if it were good for him. She also gave him chocolate you-hoo. Both in her mind were “good for him”). If it’s all she’ll eat, however, you don’t have many choices. Depending on her age and condition, this may not be the thing to worry about. We worried about it, but it was dementia that got him in the end. Not the junk food, including boost, he ate the last few years of his life. They call dementia diabetics of the brain so the time to worry about his processed food consumption was probably decades before the diagnosis. The argument that it isn’t junk food because the hospital gives it is quickly lost when you see there is a list of soda types to choose from on the hospital room service menu.
How old is she? What are her general health issues? If she has dementia or is over 80 let her eat any junk she wants. I don't take my mom high carb foods because if her diabetes gets a lot worse the facility will not keep her. I do however take her sugar free treats and when she requests it some Boost.
Gut reaction here but let your m om eat what she is willing to eat. Although towards the end of life people will stop eating and drinking, this is common and natural. But if she is eating/drinking the Boost she is not totally stopping nutrition. I do encourage you NOT to have a feeding tube put in. Many reasons but they can cause more problems. Failure to thrive is an actual medical diagnosis and that with her other medical problems would make her eligible for Hospice if that is what you would want to do.
Good info about failure to thrive diagnosis. Hospice RNs are a wealth of information and support, and the service is free.
Also agree about bad experience with feeding tubes with 2 of my loved ones. Prolonged the suffering, and one patient kept asking "why can't I eat?" They often have to run longer than they tell you to get the right amount of nutrition delivered, so the patient is tethered for hours.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
At this point, don't overthink anything, just spend time by her side for yourself and for her.
Trust the hospice nurse and care team to provide comfort for your mother, and for you as well, if you wish.
What was her height and weight before the loss?
That's a lot of weight drop in a short span of time. I'm not a medical professional but based upon my experience with my MIL (passed at 90 in LTC) it's a sign of change of some kind. Has she been tested for diabetes?
As my MIL continued to lose weight (10 lbs over a few months) they facility recommended hospice. Within 1 week of getting hospice in place, she passed peacefully -- we have no idea from what, nor does it matter at this point.
More context about your Mom's metrics would be helpful for input about whether this is worrisome or if action is warranted.
Medical staff needs to evaluate further on what's behind weight loss.
is she sleeping/getting enough sleep
depression can contribute to it
Not enough water
maybe gave a look at those things as well
What staff? Is she in a skilled nursing facility? Assisted Living? Where is she getting the junk food? When did this start?
There are a lot of good ideas and answers, if you could provide more information.
Good luck with finding an answer.
Although towards the end of life people will stop eating and drinking, this is common and natural. But if she is eating/drinking the Boost she is not totally stopping nutrition.
I do encourage you NOT to have a feeding tube put in. Many reasons but they can cause more problems.
Failure to thrive is an actual medical diagnosis and that with her other medical problems would make her eligible for Hospice if that is what you would want to do.
Also agree about bad experience with feeding tubes with 2 of my loved ones. Prolonged the suffering, and one patient kept asking "why can't I eat?" They often have to run longer than they tell you to get the right amount of nutrition delivered, so the patient is tethered for hours.