My father is in his last stage of dimentia. He is now having difficulty with swallowing, so his (in house memory care facility speech therapist) has changed his diet from a month ago to finger foods, then one week
Later to mechanical soft and now puréed foods with thickened liquids to drink. He is doing better and we have avoided any aspiration in his lungs by keeping him upright for at least 30 minutes after a meal.
My question is; he seems more agitated now and is very… read more
A good friend of mine is a pastor for a hospice organization. Just because you bring in hospice, it does not mean the end is near. Hospice is there to help comfort individuals who have reached a point where medical intervention is worse than the outcome and are there to support the family as well. I would certainly talk to a hospice agency to find out their philosophy and their approach. If your Dad is in some kind of facility, they should have names of hospice agencies they've worked with. But your doctor(s) should have them, too. Do not feel as if this means you're giving up. It only means that your Dad would benefit from some specialized care and comfort. My experience (based on my Mom) is that the hospice workers are particularly good at providing support to family members who are beginning to panic at the prospective loss of a loved one and can be very reassuring and comforting to the family members as well. They also have seen a lot so they can provide insight. My mom had FTD, a different kind of dementia, and we put her in a memory care center. Everybody assumed she would have at least 2-3 years before she got sick enough that her life might be at risk. Two months into it, she just gave up one day and didn't really wake up. She was breathing, but not conscious yet there was no physical explanation. The hospice worker called my Dad and told him to rush over because her experience suggested my mom didn't have too much time left. He was able to spend a couple of hours just holding her hand before she quietly passed. We all just assumed she made a decision on some level that she no longer wanted to live with her dementia so just let go. When hospice was recommended, it was not because her time was imminent; the facility just thought she and my Dad needed that kind of support. But having her there made all of the difference in the world at the end. Otherwise, my Dad would not have been able to say goodbye. Don't feel awkward about calling them. They are accustomed to dealing with families who have this perception that once hospice arrives, the patient only has weeks or days left. But today's hospice is different. What you want to look for is an organization that offers palliative care as part of their services. Sending you many hugs. I just went through this 3 years ago and didn't even get a break before I had to do it again, although I have no idea how long it will go on with my Dad.. It's no easier the second time around; I'm just a little bit wiser about some (but not all) of the questions to ask and processes. It's just strange because I'm in my 60s and yet I feel very weird about the prospect of being an orphan.
I was a hospice nurse for several years and Alzheimer and dementia patients would qualify for hospice when they were losing weight, no longer able to eat or swallow without choking. Agitation can be controlled with meds. I would let families know that if they were no longer eating, they were not suffering from hunger because they no longer feel hunger. The decision by family on whether or not to do a feeding tube should be decided with whether it would improve their quality of life. Hospice aides will be assigned to help with things such as bathing. In facilities it is in addition to daily care their aides do. In other words if patient needs to be changed, staff should always be there to do and not wait for hospice aide appointment time. RN will oversee the hospice care. Hope this helps
I would go ahead and call hospice. They will access him and trust me they will do all they can to help. I was hesitant also but am so glad that I made the call and met with them. The social worker that came out was so kind and understanding. And they want to help your LO and you the caregiver.
Inquire wherever you can and accept all of the are they offer. You will find a lot of support and good advice on this site. God be with you,
@A myALZteam Member, Hospice services are wonderful in my experience and I believe it it is best to ask for this service sooner than later. It cannot hurt to ask and there might be a delay as the doctor watches for signs that be meeting the criteria. Check with the nurse at the facility where he lives and ask for recommendations then interview a couple that seem to be the best fit. You might also ask other family members in the facility if they have recommendations and their reasons. What you lose in therapy services you should more gain in an aide to give him daily showers or baths, if he/you want, a social worker, an RN looking over his care and treatment as well as his general condition, possibly a chaplain and other services. I believe if you remain focused on the palliative care aspect and his quality of life over the end of his life, you will find that hospice will be very helpful and will definitely give you peace of mind. Thinking of you on this journey.
I recently found a necklace with a quote I love - "All shall be well and all manner of things shall be well." It is from the writings of 14th century Christian Mystic Theologian, Julian of Norwich. Wearing this gives me peace. I only recently read that Julian is the patron saint of the anxious. That would be a good fit!