update on DH(4)

caberr

I had posted last week that DH was so angry and combative I had to call 911.  He was brought to the hospital and was in the ER holding room waiting for a bed at a geri psych ward for 5 nights!  No bed was available anywhere.

On Wed the neurologist wanted him to see a neurosurgeon.  His CT scan was abnormal and thought it was possible he had too much fluid on his brain.  We live near Boston, so he was transferred there.   He was medically cleared and was put in a room in the ER waiting for a bed in the geri psych ward. There are none available. 

He is paranoid that the nurses are there to kill him.  He won't eat, drink or take his meds for them.  They had to give him a muscle injection to calm him down.  I go in every day and he will eat, drink and take his meds from me.  He knows me every time.  Every day is different.  Somedays he just mumbles, others he is more clear and can speak sentences.  They will not get him up because afraid of falls and in the ER holding area they don't have the staff to do this.  

He is moving to the medical floor today.  Dr said he will get more care there and is recommending they get him up.  He was jogging around the track the day before he went to the ER.   

Looking at memory care facilities and getting info on 24 hr home health care.  My kids think he shouldn't come home and I know I can't handle this alone. I will decide what to do when I get all the details and where he is at with meds and all when he is discharged.

Thanks for being here and listening.  

ButterflyWings

Gosh Caberr, it sure seems like they could find a bed so he can be properly assessed. Your kids and you are wise to stand firm that he cannot be safely discharged to your home.

He has not been stabilized and they seem to be kicking the can down the road instead of having him assessed by a geripsych or neuro that has experience with dementias. They are dropping the ball on him and you in my opinion. 

Can you call the Alz helpline for possible referral in your area?  But his current hospital (social work lead?) needs to step it up.I think is is time to escalate so they stop using you as the volunteer who can get him to eat, while they fail to get him on an appropriate treatment plan to address his delusions, agitation and more. 

Don’t endanger yourself by letting them off the hook. They can do better. Glad to hear from you! Sending hugs. 

M1

thanks for the update caberr.  you may want to look up normal pressure hydrocephalus--that sounds like why they called in a neurosurgeon, it's a potentially reversible cause of dementia, but frequently assoicated with gait abnormalities too and urinary incontinence (if he was jogging, doesn't sound like gait abnormalities).  Sometimes they'll do a large-volume spinal tap to see if the symptoms improve, and if they do, they can put in a shunt that helps relieve the large amount of fluid.  

Do keep us posted how he does.  

ImMaggieMae

caberr, I’m so sorry to hear that your DH is going through this and that the hospital seems to be failing him with their care. I had just read an article the other day on NPH which M1 mentioned. Here’s the article https://my.clevelandclinic.org/health/diseases/15849-normal-pressure-hydrocephalus-nph    It’s treatable in some cases and certainly sounds like it would be worth asking some questions. https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/normal-pressure-hydrocephalus  What if it isn’t Alzheimer’s?

Ed1937

Caberr, you seem to be another one who has a hard time getting a break. It would be wonderful if they found it was something that could be reversed. Just don't put too much hope into that. If it's not, that would be a heartbreaking letdown.

When my wife went into MC, she came there straight from the hospital. I got in touch with the social worker there, and explained that I wanted them to handle the transportation and everything. Everything was coordinated between the hospital and MC. I didn't want to bring her home, then tell her I was taking her there. It was very hard for me, but I think it would have much worse if she came home first.

Joydean

Caberr so sorry to hear what a hard time you and your dh are going through. I hope the doctors come through and you get some help. Hoping for the best for both of you. 

caberr

Thank you.  Yes, the reason he went into Boston was to see a neurosurgeon to see if it was hydrocephalus. My first question if yes, would he still have AD?  I was told probably.  The specialists met and decided it is not hydrocephalus.

He was moved yesterday to regular hospital.  He has a private room and an aid is with him at all times.  They got him to stand yesterday for a minute. I was so happy.  The nurse was amazing and told me that PT will work with him.  He is having problems swallowing food.  They will do the swallow test.  He was alert and knew me but was also confused thinking he was home.  He is getting more attention now.  The "holding" area in the ER was not great.  They are not trained to handle someone with AD or at least seem not to be. They didn't give him the attention he needed.  

I know the transition from hospital to MC is best.  I have such mixed feelings on what to do.  Praying to make the right decision for him and me.   

dayn2nite2

Was he able to get himself to the bathroom prior to all this?  If so, and if he’s been in bed all this time, they probably stuck a Chux under him and had him go, so it’s likely he will not regain his prior functionality.  Expect him to be totally incontinent now and make sure you’ve got plenty of diapers if you intend to bring him home.

Also, he’s not stabilized.

Both items should make your decision to place him a lot easier.

toolbeltexpert

Caberr I don't have any advice, I noticed where you are. We lived on stone street. Then in Plainville. There are lots of good hospitals up there as well.

Ed1937

caberr wrote:

I have such mixed feelings on what to do.  Praying to make the right decision for him and me.   

My wife has been in MC since 2 weeks ago last Friday. I still have mixed feelings, but my brain tells me this is the best place for her. I would love to go to get her today, and bring her home. But it wouldn't be any better if I did that. We know that. I wish it were easier for you to make the decision one way or the other.

 

caberr

He was sent to Boston thinking he had hydrocephalus.  My first question was if he has it will he still have AD.  I was told probably.  After being seen by the specialists they cleared him medically.  

He is now admitted to the hospital getting more attention and care.  Yesterday was a good day.  He was up sitting and singing to music.  

They have had diapers on him or just sitting on a pad.  He says he has to go to the bathroom.  Trying to get him to use the urinal or commode.  I am afraid he won't be continent. 

Ed, I have been told it is easier to go from hospital to MC.  It is a hard decision to make. I'm back and forth.  Thank you for telling me your experience

Toolbeltexpert, what a small world!  We live on Hartshorn about 2 blocks from stone.

Thank you all again

dayn2nite2

If they have had him go on Chux/in diapers then he is most assuredly incontinent of bowel and bladder and it would be very unlikely he would regain the habit of using the bathroom on his own.