So stressed

ElCy

Here’s what’s happened:

10/14 DH is independent. Drives, cooks, etc.

10/15 DH in geripsych for one month

11/15-1/5 DH in MC. Develops UTI. Becomes incontinent and has extreme aphasia.

1/13-1/30 DH in hospital. 

1/30-3/9 DH in different geripsych where I was told he was the most difficult patient they’ve had. My options were drug him to oblivion or have him undergo ECT. DH has 12 ECT treatments and MC agrees to take him back. Aphasia and incontinence continue.

3/9 Moves back to MC

3/10 and 3/11-MC calls me at work and asks me to come. He has been combative. Won’t always take meds.

3/12 I’m with him all day. Get him to shower. He has a good day.

3/13 Nurse called and said he punched caregiver and they are sending him to ER.

I have a talk with director and tell her caregivers shouldn’t try and help til after he’s had his meds. She agrees and thinks things will be okay.

3/14 I came to MC this morning and was told he tried to stab a caregiver with a pencil last night when they were trying g to change him.

My understanding is that he is only combative when caregivers are trying to change him. I love this MC because it is .5 miles from my house but I’m wondering if they are the right fit. Perhaps they just don’t know how to approach him. I’m guessing they will send him out again and we will go back to geripsych. I’d prefer he still be able to come back to current MC but I’m guessing they will refuse him.

I’m concerned that no one will take him of his combativeness is not controlled. What happens then?

Another Day

Good Lord, and I thought I had some issues going on. All I've got to offer you is prayers, and hang in there, many more people have had experience with what you're dealing with and they'll check in before long.

Ed1937

ElCy, I'm so sorry. I wonder if there is another geri psych that will take him for a second opinion. I would certainly get a second opinion before having more ECT treatments Are you aware of the possible risks?. Hopefully someone can find the right combination of meds to help him. That has to be scary for both of you.

M1

ElCy, I am so sorry.  I wish I had practical advice to offer, but I don't.  But unlimited sympathy and compassion for your pain, I can imagine how devastated you must feel.  Awful for everyone.

Denise1847

I am so sorry.  I cannot imagine your stress.   Is it possible for you to consult a physician who specializes in AZ to help with medicating him?   Maybe while he is in gerispych you can look into other MCs that have had better outcomes.   I will pray for you.

toolbeltexpert

Elcy sorry to hear this. Sounds like a combination of issues. Staff training, and medication. But whatever it is, your doing a great job. It sounds like the mc is at least understanding as they listened to you. Keep talking to them see if they offer any possible solutions that is part of their job. I'll  continue my prayers for you and everyone here.

Stewart

Gig Harbor

How terrible for you and for your husband. I would lean towards increasing meds to control his behavior even if he seems more sedated. Since they do have to change him if he is more sedated it might be a win-win situation. This might allow you to keep him at that memory care.

ElCy

Later that day MC called 911 and sent my DH out. We spent 14 hours in ER where they finally were able to get urine to test for UTI. Negative. He was transferred back to the geripsych unit he had been released from 6 days ago. 

The doc said he would not receive anymore ECT treatments but more than likely would need so many meds to control his behavior that he would have no quality of life (not that he has much now). I was told this would result in him having difficulty swallowing, which would lead to pneumonia and death. 

They said they’d tell me more tomorrow…

Cherjer

Elcy... I am so sorry to hear what you are going through. Have you thought about taking him out of memory care and taking him home? I do not know your circumstances...re: working etc.

My DH is at home..late stage..but I have caregivers here with DH to help getting up in the morning and getting to bed at night. It is not cheap for sure (at $30 per hour...7 days a week for 10 hours each day) but the care he gets and being home is worth every penny. DH is now on hospice which is wonderful...I do not look at this sadly but extra help. I decided that I will keep DH at home until the end unless I cannot do this. DH can walk which a nurse told me he should not...got a new nurse who encouraged me!!

Cherjer

Also..I took him off all antipsychotic meds...and only takes Depakote and his AD meds.

White Crane

I am so sorry for what is happening to you and your DH.  Sending prayers and hugs.

M1

Elcy I am so sorry to hear this.  it does sound like perhaps hospice is in order, it may be impossible to get to the bottom of the series of events that has taken him down.  Wishing you both comfort and relief from suffering.

ElCy

He spent a week in geripsych this time. No new ECT but lots of meds. Returned to MC today. Hospice began.

Ed1937

ElCy, I'm so sorry it has come to this. But I'm glad you have hospice to help you in your troubling times.

ElCy

ElCy wrote:

Here’s what’s happened:

10/14 DH is independent. Drives, cooks, etc.

10/15 DH in geripsych for one month

11/15-1/5 DH in MC. Develops UTI. Becomes incontinent and has extreme aphasia.

1/13-1/30 DH in hospital. 

1/30-3/9 DH in different geripsych where I was told he was the most difficult patient they’ve had. My options were drug him to oblivion or have him undergo ECT. DH has 12 ECT treatments and MC agrees to take him back. Aphasia and incontinence continue.

3/9 Moves back to MC

3/10 and 3/11-MC calls me at work and asks me to come. He has been combative. Won’t always take meds.

3/12 I’m with him all day. Get him to shower. He has a good day.

3/13 Nurse called and said he punched caregiver and they are sending him to ER.

I have a talk with director and tell her caregivers shouldn’t try and help til after he’s had his meds. She agrees and thinks things will be okay.

3/14 I came to MC this morning and was told he tried to stab a caregiver with a pencil last night when they were trying g to change him.

My understanding is that he is only combative when caregivers are trying to change him. I love this MC because it is .5 miles from my house but I’m wondering if they are the right fit. Perhaps they just don’t know how to approach him. I’m guessing they will send him out again and we will go back to geripsych. I’d prefer he still be able to come back to current MC but I’m guessing they will refuse him.

I’m concerned that no one will take him of his combativeness is not controlled. What happens then?

ElCy

Update: he was sent out and went back to geripsych for 7 days. Returned to MC with hospice on board. 3 days later MC called 911 for behavior and he’s back in hospital with UTI. They are drastically changing meds from geripsych.

I went to MC today to discuss my concerns about his care there. They told me they will re assess and maybe let him return with hospice on board again. But, while I was there not one single caregiver approached me to ask how he was. I believe they are now prejudiced against my DH and have no real understanding of this disease.

It’s a beautiful place, affordable and close by. I visited another MC that will cost 3000 more per month. I’m going to have to make the rounds again. I’m so discouraged. Hospital is going to see if he is a candidate for skilled nursing.

My poor DH has been in the hospital for 101 days since mid October…

M1

Elcy I am so, so sorry.  Truly a living nightmare.  His poor, poor brain.