Hawaii - lack of medical input available

Alansad

My wife has had Alzheimer's for 5 years, and has reached a stage of crying all day, appearing to be in pain, and getting little to no rest.  We have a referral to get a consult at the Cleveland Clinic in Las Vegas, but trying to decide weather the move and plane ride would be more detrimental than helpful has put us at a road block.  My wife has been bed bound since December since she had a mental breakdown possibly due to lack of fluids, nutrition, and lack of sleep combined.  She eats and drinks with assistance, able to urinate and have bowel movements, is on a regiment of THC/CBD.  We have used Haldol and Ativan as needed, but neither seems to be working anymore - and we have no medical advice available on how to proceed.  

If anyone has and input, advice, or stories of going through a similar experience, any and all comment would be appreciated.

My wife is very loved by her family, and we would like to make this as easy and graceful for her as we can.

Marta

Sounds like she is ready for hospice.  You don't need a referral for hospice.  You can call on your own initiative and interview several hospice providers.

I am uncertain about what you mean when you say: We have no medical advice available on how to proceed.

Cynbar

It really sounds like it would be too much for her to attempt the long trip to the mainland. I agree with the above poster, request a hospice evaluation. The criteria for dementia seem to be a little vague, so if the first one says no, contact a different agency. If hospice accepts her, she will get a nurse case manager who will be a big help with medical management. She would also get home health aides and other supports including social worker and chaplain. You don't lose anything by giving it a try. You can request this yourself, the agency will get in touch with your mother's doctor for you. Good luck.

star26

Your bio says your wife is already under hospice care. What is the referral to Cleveland Clinic for? Crying all day, not sleeping, and pain can be treated in Hawaii. I have the same question as Marta about "we have no medical advice available".  Can the same person that referred you to Las Vegas, consult with a geriatric psychiatrist or other specialist in Honolulu?  I'm in Hawaii too and we had to do this. With Covid, you may even have more opportunities now to use telehealth in conjunction with your local MD or nurse practitioner. A hospice provider should be skilled and attentive in managing the symptoms you mentioned - do you think the problem is related to your specific provider?

Alansad

My wife went on hospice in December in order to get the medication she needed to get some sleep. The doctors also said she would last for about 3 weeks, and this was her time.  I don't feel they took into consideration her dehydration, lack of nutrition and sleep. The hospice nurse can't believe how well she is doing now - but also can't answer basic questions. Why is her face flushed? Should we keep the room light or dark?  What is a good oxygen level?  Her primary care doctor also says he doesn't have any other ideas on things we can try. As far as medical input, we get told repeatedly that Alzheimers is terrible, and there is nothing we can do, and that this island is not equipped to really help.  That is a hard thing to hear - and googling everything and reading every article we can find is somewhat terrifying also. Every med that is available to us clearly states to not use on Alzheimer patients... so having trust and faith in the medical profession regarding Alzheimer's patients here on the Big Island  is hard.

Regarding the Cleveland Clinic referral that was my request to our primary doctor. Since they have a Woman's Alzheimer's department I felt that if I could get my wife back to sufficient health to travel there would be more options for a more peaceful and comfortable journey's end.

The quickly worsening of my wife's symptoms and the dark world she entered took me by surprise and trying to get help and some guidance was not available. To ask questions of our primary care physician had to go through an appointment process, usually a week or better in the future when I am in an urgent situation was most distressing. If I could go back and do things over I would and the first thing I would do is to go back to the mainland while my wife was able to travel.

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