Mom is stage 7f vascular dementia, on Hospice in NH. We didn't think she would live through last Thursday night, but she is hanging on by her fingernails.

The NH staff has been instructed to ask any medical or care questions to ME, not Dad, because he does not understand this stuff and he has memory issues himself.

Yesterday Dad was there visiting, staff asked if he wanted her to have a flu shot, and since they have religiously gotten flu shots for years, he said yes. He told me about it later in the evening.

I called Hospice and they confirmed that yes, in her extremely weakened condition, the flu shot may be dangerous for her and advised getting a medical opinion first, which they would get from their medical director. I called NH to say "hold up" -- they gave it to her last night. Wouldn't you think they would know the risks?

Then the nurse tells me that her vitals are fine today so she is not having any reaction to the shot. Yes, but flu has a 7-10 day incubation period, to my understanding.

So if she develops flu, it will probably kill her. We only expect her to live a few more days anyway, so I can't get too excited about that. But if she gets flu -- couldn't she pass it to others in the facility?

Any nurses out there who can tell me if I am just being hysterical?

Just shaking my head...

Hi CS,
My understanding is that the flu SHOT is an "inactivated" vaccine, which contains only dead virus. Your Mom should not get the flu from it. It IS approved for people with chronic medical conditions.
The nasal mist is made with live, but weakened, virus, so does not cause the flu, either.

I would ask her doctor for reassurance.

I'd be more mad that no one asked me like you requested. It would have been all the same if it were a feeding tube or something like that.

I think it depends on what exactly you are upset about right now...the fact that she got the shot without your ok or the fact that she got the shot. Grandma just had a flu shot a few weeks ago and then got violently ill for about 12 hours 2 days later so that was my first thought. The dr told me that a active flu vaccine is no longer made. So it is impossible for them to get the flu from the flu shot. (I later found a whole handful of grandma's reflux pills hidden that she hasn't been taking, so that explains her vomiting). However, if you are upset about them not getting your ok and talking to you first then you have every right to be hysterical. This particular situation might be something that doesn't make much of a difference either way, but the next one won't. They should certainly not be in the habit of doing things without talking to you FIRST!

I know healthy people can't get flu from the shot. But if its whole purpose is to irritate your immune system into making new antibodies, and her immune system isn't doing much of anything, isn't there some sort of danger involved?

I am upset they didn't consult me. It's an ongoing problem. Some things I don't mind -- yes, her lips are blue, put her on oxygen and let me know when you get a chance.

But they've changed her insulin dosage without telling me, kept getting her up in the geri-chair after we all agreed to keep her in bed for comfort care, etc. When I suggested we change her pureed diet -- which she was adamantly refusing -- to a liquid one, the dietitian looked at me as if I had suggested putting Mom out on the side of the road to starve to death. (It's been five weeks since then.)

They don't seem very Hospice-oriented, even though they have their own Hospice. Thank Heavens we are using an outside Hospice agency there.

Anybody who thinks NH placement means you are skipping out on your responsibilities as a caregiver totally misses the point.

Thanks for letting me vent!

I totally agree that the NH really "doesn't get it." But if it will make you feel any better about the flu shot, it must not do anything to stimulate the immune system, cause they insist that mom get a flu shot, but she can't do anything or take anything to stimulate her immune system due to a liver transplant. Her immune system is supressed and it has to stay surpressed - but they say she must get flu shots so, it must not really work on the immune system. Sorry, they seem so "family neglectful" for lack of a better term. It just never ends does it???
Marie

That's reassuring, Little Red. Thanks.

Songbird, I am sorry this happened; it must be upsetting to experience fresh evidence at a very delicate time that your partners in care may not be on their game at the precise time that you need them most. I hope your mother has no reaction to the shot and that the days ahead will feature some moments of peace and light. Best wishes. Beth in SC

I highly doubt your mom will get the flu from the flu shot. People are in such a panic right now over the flu due to the swine flu.

The real issue is that you should have been the one the NH contacted to get permission. End of story. And truth be told, what difference does the flu shot make for her right now, except to have given her a shot? Seriously, what are people thinking?

I seriously wish you some peace right now. I honestly don't believe the shot did her any harm.

Dear Carolina Songbird, What a bunch of *%$# you have been going through. It doesn't surprise me either that they would go ahead and ask your dad AFTER you told them not to -- when my mom was in NH, some of those same things happened. Darned scary if you ask me! And I hate that your mom is hanging on by her fingernails -- that must be so tough for you on top of everything else. At least her vitals are better. I'll be praying for her -- missed talking with you yesterday and today but been too busy to be on this thing. God bless you! Barb

quote:

Anybody who thinks NH placement means you are skipping out on your responsibilities as a caregiver totally misses the point.

Bingo!

Dear Sally:
I am very sorry for what you are experiencing. There is a way to get your wishes carried out in a consistent manner.

Call the hospice nurse and inform them that you want them to WRITE ORDERS ON THE MEDICAL RECORD immediately stating "Bedrest Only - do NOT get patient up in guerney chair." Second order; "Any change in medication/treatment is to be communicated to daughter PRIOR to implementing any change."

This then becomes an "order" just the same as though the doctor has written it and such orders must be followed.

Next time you are visiting, ask to see the patient care plan kardex (the card nursing staff uses at shift changes during their report and the card from which they take their direction for care) and ensure that the hospice orders are part of the care plan.

You can also meet with the DON and firmly state your mandates and ask her to speak with the staff as they have not been compliant.

However, the written hospice orders on the medical record/chart are the driving force in keeping things in line.

Sorry I haven't been on to talk, but I'm down with some side effects to a Pneumovax vaccination. Go figure.

I'm thinking of you Sally, and I am sorry for the frustration at a time when you need it the least.

Johanna C.

quote:

Originally posted by Always Learning More:
[QUOTE]

Anybody who thinks NH placement means you are skipping out on your responsibilities as a caregiver totally misses the point.

Bingo![/QUOTte

Preach on! You may not be doing the hands on every day, but there's a lot of stress and worry in advocating for a loved one, and praying that it gets done right, and having to get all crazy at the staff when they don't.

I agree Songbird, the point isn't that they gave her a flu shot. It isn't going to do much for her either way. The issue is that you gave a specific set of instructions and they were not followed. On several points. I'd raise a holler if I were you.

Sally..

just a thought my friend..

know the decision your father..made during his visit concerning giving your mom a flu shot..was ok..down deep your mother knows..you both only want what is best..for her.

you do not want your father to feel..he made the wrong choice..for the woman..he loves..

may you let the nursing home know..yet again..that you need to be..informed of any medical decsions made ..for the future care of your mother..as you feel your father wants your help in decisons made...

the nursing home is only..trying to prevent..any of their patients..getting the flu..

I feel it is so hard to watch those we Love.. so fragile..yet hanging on..in the autumn of their Life..

you and your father..are in my thoughts my friend..and prayers at this time..

you asked.."am I just being hysterical?"..no my friend..I feel you are doing the best you can...at this moment in time. .not easy..may you choose peace. Namaste Love Rosie

Carolina

Sorry - will try to make this brief.

One year ago my MIL passed away - I was her caregiver for 4 years. She was in a NH when the lady in the next bed spiked a high fever - and then MIL developed the high fever. Needless to say her roommate passed and I was so very upset that they didn't call me and they didn't move my MIL. MIL was transferred to Hospital on my request -- she was dying. Potassium level virtually 0 and she was extremely dehydrated.

I was just so angry at the NH for their neglect. Hysterical.

MIL died within 2 weeks -- and I remained angry.

I sincerely identify with what you are feeling, anger, disgust, frustration, and of course how dare you not contact me. At that time I remained focused on this issue. I phoned the Ministry of Health to report this NH's lack of care. There was an investigation on many other issues as well.

1 year later I look back and can see that it was time for MIL to pass - I did not want her to go and still I want her back.

I needed that focus re. NH at that time and I do not regret any of my actions at that time. I do realize though that I was not grieving the inevitable of my MIL passing.

I honestly feel you are justified in your reaction.

Your mom could pass tonight or another day. The pain of that will not go away. I believe it all is part of grieving.

I don't know if any of this will help you, but God bless you Carolina, your dad and your mom. My prayers are for your.

Don't ever feel alone, we are here for you.

Catherine Ann

Caroline, I am hoping you follow Joanna C's advice about the order's on the chart. Unfortunately, unless they have those things in writing like that you are most likely not going to be HEARD. Figuring out what the system is that best deals with these things is difficult unless you have been part of healthcare. I am a retired RN.
Linda

Dear Sally: How are you doing my dear? I find myself thinking about you so often and wonder how everything is going.

Soft hugs sent your way,

Johanna C.

Sally,

As a retired RN and a fellow PV I hope you follow Johanna's advice about the orders.

Thinking of you often! If you need us, we're here!