I am the only family member involved with care of my 47-year-old sister with dementia who has been in LTC since 2018 following a series of 4 strokes and ongoing seizures (both as a result of cerebral vasculopathy caused by radiation treatment for childhood brain cancer). I am 53 and work full time but am trying to get reduced hours from work through a program the state of Colorado offers for family caregivers (my mom is also in LTC and I am the only family member involved in her care as well).
My sister has been deteriorating over the past 6 months with frequent falls (she forgets she can't transfer herself from her bed to her wheelchair), increased agitation, anxiety, and crying (recently prescribed hydroxizine and Zoloft which seemed to help a bit but she is experiencing and increase again), weight loss, complaints of intense pain during changing her brief (had significant bruising from recent falls but also seems much more sensitive to pain in general), lots of anger and agitiation at the CNAs — she perceives her discomfort as caused by the staff (I am there a couple of times a week and the staff are VERY kind though overworked).
She is very very frail. I notice a huge decrease in her functioning (alertness, fatigue, etc.) if she doesn't eat or drink, but she is still interested in both to some degree. But overall it is very clear that she is deteriorating. I suspect she may be having breakthrough seizures as well, but none have been witnessed.
She was hospitalized last week after a fall for observation — nothing noted other than significantly low hemoglobin. A GI bleed was ruled out, so not sure what is causing that and they discharged her when she experienced one day without a decrease. ER staff suspected a possible seizure but the hospital wouldn't bring in neuro consult unless a second was witnessed.
I met with the LTC social worker today about having her evaluated for hospice, which should happen tomorrow I think. I really don't know at all what to expect, how long she might have, etc.
Her primary care provider through the LTC is very hard to reach and unresponsive and not a good resource for answering questions. I have so many questions, but I think my main questions are: What should I expect with hospice involvement? What questions I should ask? Etc.
Thank you!
from hospice and everything they offer. They have an emergency 24 hour number and they are whom you call instead of 911. My mom has someone who visit to bath her twice a week, check vitals, make sure she has supplies and meds are filled. They also provide supplies like no rinse body wash. I find them to be the most support I’ve had since the start of the dementia
journey,
family included. They also have optional memebers of the team if you opt for them line a Chaplin, a musician even volunteers to sit with those in hospice care. They also told me the frequency of visits would depend on where my mom is as her disease progresses and it’s more about keeping her comfortable as we know there’s no cure we’re going after
Thank you for updating us. I hope for peace and comfort now. I am relieved you have the support of hospice.
Take care x
Treatments will not be done after Hospice comes on boards. As an example, a fall in hgb. or hct. on blood count would not lead to infusions of blood to build up the test numbers.
Hospice is comfort care for the end of life.
Your questions will be your OWN. Whatever questions you have on intake, you will feel free to ask more questions as they arise for you.
I am so sorry. What a sad quality of life; I hope you will be able to see her demise as a blessing and as a relief. This must be so difficult to witness ongoing, to say nothing of a crucible to endure for your Sister. I am so very sorry.
I'm so sorry for what you are going through.
I can't speak about the hospice service, as I'm in the UK and it's different here.
I can talk about end of life care, though.
I don't really think it would make a difference if the hospital did find out whether your sister was having seizures, as it sounds as if your sister is failing to thrive. Changing or increasing the meds for seizures probably wouldn't change that. I'm sorry.
People do seem to experience an increase in both agitation and pain when they are approaching end of life. I would ask for a stronger sedative and pain relief, such as morphine. My mum became more agitated when she had her first increase in morphine, but this stopped when both the morphine and sedative were increased to a level that made Mum comfortable.
Some people are unhappy about their loved ones being dosed up, but I believe that everything should be done to ensure comfort, as well as a peaceful passing.
Mum's brain had been damaged by epilepsy, TIAs and a major cerebral haemorrhage. She then developed vascular dementia. There was no coming back from the brain damage and I just had to ensure her comfort and peace of mind - as far as that was possible. It isn't always.
Your sister has been dealt a bad hand, but she's lucky to have you.
This will be a hard road, and the only ending is your sister's death. So, it's going to be a difficult journey for you, however long or short it is. So, take care of yourself.
Don't think that you need to be with your sister all the time because she could be gone soon. Instead, think to yourself that you need to keep going after your sister has gone, so you need to stay healthy. Also, it's better that you are completely present when you visit your sister, not so frazzled that you can't make the most of those precious moments.
As Mum's doctor said to me, this is a marathon, not a sprint. Pace yourself.
I wish strength and peace to both you and your sister.
A Nurse will be there to see her at least 1 time a week. More often if it is necessary.
A CNA from Hospice will take over the bathing or showering that is currently done by the facility staff. (both can't do it as it is a duplication of care)
All the personal supplies and medications will come from Hospice.
There will be no more trips to the ER or hospital unless authorized by the Hospice.
The Primary medical provider would then be Hospice. You or the facility can contact Hospice 24/7 if need be. Hospice does have Nurses on 24/7 to cover any emergencies.
It sounds like your sister would qualify for Hospice
You sound like you have a VERY full plate and I am sorry that you are going through this with both mom and your sister. 🙏