Mom is 82 and has vascular dementia. During the past three weeks she is barely eating enough to feed a bird. I brought her some soup and chicken tenders yesterday and she did eat some but only about 25%. Her blood work and labs were excellent its just she keeps getting dehydrated since she's not eating and drinking enough. Any advice? Is this a good option for mom?
Palliative care provided us with a wonderful healthcare partner in our nurse practitioner. My husband had multiple medical issues and symptoms and we finally had one person to help us manage them. Our quality of life improved significantly during the five months that we had palliative care.
His hospice care was more intensive than in many cases because my husband was almost at end of life when it began. He ate and drank what and when he wanted, which naturally diminished. Both palliative and hospice services are about comfort care and no one would have denied my husband a sip of water if he wanted it. The situation as described by another poster would be highly unusual fortunately.
It was also very clear to me that I was still in charge of everything; hospice was there to guide and support me. I hope Shelly69 will update us, unless I’m missing it.
Some people DO NOT realize that a person doesn't have to be terminal to qualify for hospice care.
1. Ask nursing home manager / administrator why referring. (You didn't mention to us which is important to know.)
2. You need to talk to Hospice administrator 'more' than / vs asking us - as you see here, you already have 34 replies ... while this may 'help' you - it would overwhelm me as everyone has their own experience... plus) YOU must talk to administrator/social worker directly to ascertain what Hospice offers.
Every Hospice office is somewhat different in how they are managed.
Get everything in writing.
The major consideration in signing up for Hospice is knowing that their focus is
*** KEEPING A PERSON COMFORTABLE.
*** They DO NOT make decisions based on keeping a person alive.
Most (not necessarily all) medications will be stopped.
If there is an 'emergency' hospital / ambulance need, they likely won't take her - although ask.
These are the things you need to learn / understand.
And, once a person is in Hospice, they can be released from their care.
Ask yourself why you feel so scared about something you do not know about.
Is it losing your mom? (most likely / understandably)
Visions of what you think Hospice is vs what it actually is / offers.
Grief / grieving.
Nearing the end.
All this is understandable although your re-actions will be well served to check yourself and get all the facts / information before re-acting to unknowns. Don't waste / expend your emotional / psychological energy unnecessarily.
Make informed decisions, which will affect how you think and feel.
I know, easy to say.
In my experience...
* my friend was admitted (not terminal) as the MD in nursing home 'did him a favor' to get extra care. It was wonderful - for him.
* On the other side, my client waited way too long (months too long) and died after being in Hospice for two weeks). It helped me considerably as I was her personal care provider, where she resided (which had a nursing dept), and was extremely exhausted with all the 'emergency' needs - ongoing.
Through hospice, she was provided morphine enough to take away pain and breathing issues-until the end. They also provided me a lot of support, and follow-up grief counseling which helped me considerably.
Gena / Touch Matters
Myth: Hospice means giving up hope. (Notice it’s only one
myth)
Facts: Hospice redefines hope and helps patients and their families reclaim the spirit of life, and
Hospice care focuses on improving the patient’s quality of life allowing them to make the most of the time they have.
And a good friend of mine in the senior care business helped put it into perspective: 20% of hospice patients are at life’s end, but 80% are actively living.
While I was also scared to take this step, I’m so glad we did because it gives us additional help that we wouldn’t otherwise have. And, people go on and off of hospice all the time. Blessings to you and your loved one. You are not alone. 💕
We have stayed on top of skin issues (yeast infections & irritation from sensitivity to urine), severe cough with mucous, and even had use of the on call nurse.
I've had prescriptions sent to the pharmacy in evening by the Hospice doctor, so I could start the medicine that night.
They are a blessing. So much care that goes above what a primary care doc does during typical clinic hours.
Please accept the service.
Until 2 weeks ago she was able to manage her bathroom duties, but no longer. Medicare is picking up 28 hours and we (her money) are paying another lady for another 10 hours.
She will be 100 in February, not sure that she will make it, however I know that she wants to as her cousin made to 100 and our mother is VERY competitive!
Hospice is so helpful, embrace it, don't fight it, be positive and work with them.
Sorry about your mother, do what is best for her.
Prayers to you and your family.
How wise of your loved one's nursing facility made the recommendation for a hospice assessment.
Please accept this recommendation and lean on hospice staff and volunteers during this transition. Most hospice programs offer 1 year of grief counseling after the loved one has passed.
We do need to reconcile our ambivalence towards death. I was fortunate that my parents who were young orphans channeled their losses into a loving manner for acceptance of death whether it was one of my grandparents or a pet. Death was discussed in a comforting manner so that when it happened the pain was raw but there was a comforting acceptance of the loved one's passing.
that could mean weeks-months - maybe longer
they are known to provide support for both stent and carer and that includes coping with the emotions that go with it all which are very deep.
its best to speak to them
and you will get a feel for what they can offer which may prove really helpful to you
a horrible time but remember you need support as well and these people may offer just that
best wishes to you
Hospice provides grief counseling, so you may want to inquire about that. Medicare pays for hospice so that helps too. Realizing cancer treatment would not help my brother, and the treatment would make him miserable, I made the decision to put him into hospice. It’s a big hurdle emotionally to make the decision but I know he wouldn’t have wanted to keep living in the condition he was in.
We recently chose to transition my MIL to hospice (bedbound in facility LTC with mod dementia/memory impairment) on the advice of her team. She had no real medical diagnosis of any specific health issue. At 89 she then lost 10 lbs in 2 months and was just becoming weaker. In hospice she'd receive more personal attention (not medical attention, but visitations by people and therapy pets, and pain management). They were not going to make her eat or drink, however.
IMO hospice is a good pathway for your Mom. But there's a reason they are recommending it and it's probably because they feel she will not be here much longer. Such was the case with my MIL, and we are so grateful for the recommendation and the option.
May you receive peace in your heart.
Sometimes with vascular dementia or lewy body dementia or any dementia end stage means the person becomes agitated or violent. It went on the local news recently, a case in a fancy neighborhood where the husband and wife lived in memory care together to the tune of $18,000 per month. He stabbed the wife to death and now spends his final days in jail and prison, and ordered to come up with $2,000,000 in bail to go "home". Since violence or agitation of this type means end stage this person would have qualified for the hospice dignity treatments of this horrible devastating disease.
I don't mean to alarm or scare anyone or judge but I question the supports for not involving hospice to help treat this end stage as it could have gotten dealt with by clinical compassion as end of life considered normal by hospice. Instead the wife died, and the husband now spends his final days treated as an 86 year old criminal.
Some people go on palliative on and off for years, the family often finds it a relief as every medical problem like not eating or agitation gets addressed by comfort measures. Hospice will treat the whole family on the daily benefit including a chaplain who will help everyone work through the spiritual side of end of life. Read about Elizabeth Kubler Ross the swiss Psychiatrist who developed Hospice and Palliative to bring comforts to end life diseases that cause suffering for decades or years or months. Dr. Kubler Ross also researched the afterlife or spirituality around grief and death processes in the 1970's, it might help to read about this. Denial the first step of the grief process, acceptance the final step...
Hospice is intended to provide comfort care for someone that has a terminal illness.
Someone that has a life expectancy of 6 months or fewer. BUT it does not mean that a person will die within 6 month. A person can remain on Hospice as long as there is a decline. Guidelines are set by Medicare and a person is evaluated periodically.
With Hospice there will be no more trips to the ER. There will be no more invasive testing or diagnostic testing. (If testing needs to be done or if hospitalization is necessary it can be approved by Hospice.
Hospice will not "kill" a patient by over dosing with morphine or other medications. A person dies while on Hospice because they were dying anyway and they would have died with or without Hospice.
Hospice will try to keep a patient comfortable.
Hospice will have a Nurse check on your mom at least 1 time a week.
Hospice will have a CNA give mom a bath, shower or a bed bath at least 2 times a week. (the facility will no longer give a bath, shower or bed bath)
Hospice will order all the medical and personal supplies that are needed.
If you wish a Volunteer from Hospice can come visit mom each week.
And as mom reaches end of life Hospice can have a Volunteer there when you are not so that mom will not die alone.
As you can tell I am very much a proponent of Hospice.
I could not have cared for my Husband the way I did if it were not for Hospice and the amazing Team I had.
Now about mom not eating a lot or drinking.
This is part of her body shutting down.
She will not feel hunger or thirst like you or I do.
To give her fluids or food can cause her pain and create problems. As much as you might think a feeding tube or IV's will help they will not so I urge you to resist that thought if it enters your mind.
Talk to the person from Hospice.
Listen with an open heart and mind.
((hugs)) This is difficult no matter what you decide.
It's sad to see Mom like that but she no longer is as active as before and that's why there's loss of appetite. I was bringing my mom all her favorite foods too, ice-cream and pizza and always had peanut butter and crackers. The mind is shutting down along with the body so Hospice is going to help her out immensely.
When I, as POA/health directive, sat down with Hospice, they told me not to stop her medical premiums. That was just incase she went off Hospice her medical insurance would be active. It's not likely but if she did and needed an operation or something that would be so costly without insurance. I know during Hospice, I had her sent to the hospital when she contracted C19 and I believe her premiums covered that.
Don't think of what it's doing to you, think of what it's doing for her. This is more people looking in on her with every desire to make her last days more relaxed.
To sustain life or ensure a longer life, have a doctor surgically place a tube into her stomach for fluids and nutrition.
To focus on quality of life and not worry about "how much" life she has left, allow hospice care. Hospice staff work to help the client be as comfortable and engaged with family and friends as possible. They DO NOT shorten a person's lifespan. They can order and give medications for pain/discomfort. They will not force clients to eat or drink if they do not wish to. They will maintain hygiene, toileting, turning... to keep the person comfortable.
I would recommend that you talk with hospice care to find out what services they would provide your mother. They are known for being a very kind and caring group of people. You can then decide on whether or not you wish to use their services.
I think it is really important to understand what your palliative team's expectations and goals are during your mom's time in the program and importantly if they match your mothers wishes. If palliative for example wouldn't be willing to treat with antibiotics for something like a uti or chest cold that may come up and she dies from this as a result is this what your mom would have wanted or leave you feeling like she was denied basic care. No judgement either way, it really is about advocating for what your mom would have wanted.
Also ask them what their plan is for end of life care and what meds they use during this time and understand how those meds affect your mom's consciousness and speed of passing. I think it is important to understand what they would do so your on the same page and not surprised by anything.
In the intern, have you tried ensure, or boost drinks? Sometimes with vascular dementia we were told the taste of food can change and you have to explore foods that they usually don't like. having something that tastes a bit sweet or like a milkshake may go over well.
I wish you and your family peace during this very difficult time, I know it isn't easy but know that your mom will be so grateful for all you have done and do for her during these days.