In home hospice

Mobile AL

Daddy passed out early Friday morning and I had to call an ambulance to take him to the hospital. Turned out he was very dehydrated again even though I had been pushing liquids toward him every hour he would be awake. The dehydration led to a UTI and his blood pressure dropped and they suspect he had another stroke, mild one but he lost a lot of coordination and muscle tone. Now he can't hold himself up to walk. 

Tomorrow they are moving him to inpatient hospice for a couple of days and will be taking him off Aricept and have physical therapist in 2-3 times a day. 

From inpatient hospice he will come home and start home hospice. There are going to be different challenges then but at least I won't be alone in meeting those challenges with the home hospice assistance. And I will have the option of taking him to inpatient hospice when I need a break. A break to me is having the time to attend to my own medical needs that I've had to postpone for too long (heart Stent, iron infusion, colonoscopy)  because they required sedation. 

The hospice people told me that daddy's Medicare would cover everything which is a really huge relief. 

So why am I feeling it's too good to be true?  Why do I fear something isn't right?  It's been really tough over the past two years and I've called different agencies and home facilities, reaching out for some relief, assistance or help. Their options were all too pricey for my budget and insurance was no help. 

Am I maybe questioning whether I'm making the right choice for daddy?  Definitely. But I don't see that there is any other choice to make. I know he needs more help than I'm able to give him on my own. And I'll be 70 next year so I can only do so much. 

Have you chosen this path for your LO and how has it worked in your situation?  Was it a choice you regretted?  Anything you can think of that I should be prepared for?  

abc123

Dear Mobile, I help my Dad care for my Mom. I called in a hospice company a few months ago. It has been a lifesaver for all of us! A CNA comes in Monday thru Friday for 30 minutes to an hour. They shower her, wash her hair, clean and trim her nails, change the beds linens and start a load of laundry. They deliver all of Moms meds. They spend quality one on one time with her. Mom’s quality of life has improved. An RN comes in weekly to check her and offer guidance to Dad. A social worker also comes by and calls Dad. She also offers support and guidance to Dad. This is all covered by Medicaid. I can’t  say enough about having hospice. I’m extremely grateful for the help they offer my parents and me!

Are you still taking care of your Mom too? I hope things get better for you. I wish you well. 

Cynbar

I think hospice will be a great source of help and support to both you and your dad. Also remember that you aren't locked in ---- if for some reason it's not working out for you, you can either switch to another company or revoke and take him off. I don't think that would happen, but it's comforting to know you can change your mind. Yes, Medicare and most other insurances will pay 100% of the cost. Medicaid is not needed, although that would pay too if it's the only insurance someone has. No reason at all not to keep hospice a try.

Jamaicabound

Dear Mobile - I cannot tell you how sorry I am that you have reached this stage but I can assure you that for me and my husband with AD, hospice has been a Godsend. He has been under their care for several months. I have a nurse that comes once a week and as he progresses she will come more often. I have aides that come 4 times a week to bathe and help me with his hygiene. I have a social worker and Chaplain that come biweekly and provide resources and spiritual uplifting. I have created a personal relationship with all of these team members. They listen, they laugh, they cry and I have found that they are in this field because they want to be. They create bonds with the patient and the family As a caregiver they are a "social outlet". for me.

As far as the financial piece, hospice, thru Medicare, has provided everything I need, from baby wipes to depends. The money I would be spending would cause me much financial stress.

The hardest part is accepting that your loved one has reached this stage. I pray you will eventually find peace with that also. I  will pray for your strength thru this.

jfkoc

Please discuss if all meds are going to be removed. This should be your decision not theirs.

Mobile AL

Abc123, my mother passed away two years ago this month, two months after my sister passed away. Now it's just me and daddy. That is one reason this with daddy is so upsetting. 

I don't think I have been able to grieve their losses. Eight months before my sister passed my brother had a massive stroke and I held myself together for my sister, mother and father. The same when my sister passed. I stayed strong for my parents. Then mama passed and I had daddy to take care of. 

Not knowing whether I've made the right decision regarding daddy and hospice is really eating away at me. He has gone down so fast since he went in the hospital. I'm beginning to worry that he may not be up to coming back for home hospice. 

Mobile AL

They are taking him off Aricept which is okay. It's no longer effective at this stage. They are putting him on seraquel (spelling is wrong but several in this forum have mentioned it)  

Because he had a stroke several years back, and having mini strokes now, they are adjusting his meds. 

He can't walk now and can only stand if 2 people hold him so he's basically bedridden. I'm sure that has a lot to do with his agitation. Twice they've had to give him Xanax to calm him down. 

I can't stay with him very long where he is now. It's a different wing but the same floor where my sister and my mother were when they were in hospice. It's the hospitals hospice floor but the wing daddy is in is for inpatient hospice. 

Mobile AL

Ten or twelve years ago daddy and mama went to Tennessee to see daddy's sister. She had alzheimers and was just put into hospice. Daddy was very upset after visiting her. Afterwards he told me no one should have to die like that. That comment keeps going through my head. 

Three or four years ago, daddy's younger sister passed away. Again from alzheimers. When he was told she had passed he commented that he thought she had died years before. He was confusing it with his older sister. 

Last February my daddy's other sister, who had been bedridden for several years, passed away. She had been dealing with alzheimers for several years. I didn't even tell Daddy. It was just 4 months after my mother had passed and I knew he wouldn't even remember who she was. 

Daddy had 5 siblings and 4 of them died with alzheimers or complications from alzheimers. The other sibling died while in the navy, about 70 years ago. 

jfkoc

I would not let them adjust any meds w/o the approval of the perscribing Dr.

Additionally I would ask why they are adding Seroquel? 

Jo C.

You are doing the best you can as a very loving daughter and Hospice has been a blessing for most of those who have used them.  Hospice will be there to support you too, and you can discuss all meds and care with them and they will accommodate as much as possible. 

Seroquel is prescribed for the agitation you mention - they can start with a very low dose to see how much it helps him and assess its effect if lesser measures to help the agitation are unsuccessful.   They will provide any necessary equipment at no cost to the patient, so that too is a blessing.

You do need to get your own important medical issues addressed, this is very important.  Be sure to ask about how often and how long Respite Care can be provided and let them know in detail about your medical needs if you have not done so already so they can help plan.  One thing to remember, if at any time you do not want Hospice service, you can cancel it.  My guess is that you will find them nicely supportive.

Let us know how it is going and how you are, we will be thinking of you.

J.