MCF Had to Call 911 Again

Dio

I can't sleep. So here I am. This post will come across as ramblings because it probably is. DH got combative again when 3 staff tried to change him to get ready for bed. He took his night meds, too. Yet, he fought them and pushed one of the staff who fell onto the floor and got bruised up. DH wouldn't settle down. So 911 was called. When police arrived, DH had calmed down with his usual display of showtiming in front of authorities. Police suggested that staff leave DH alone for the night to avoid more conflict. Then see how his mood is in the morning before deciding what to do. So the facility called me to inform me of the incident. Staff was shocked from his combative behavior cuz he had been such an angel during the day. Staff apologized for calling 911 on him. I said no apologies needed. If he showed any sign of hurting anyone, to send him to the ER without hesitation. At this point, there was nothing I could do. Nothing for me to do. Only now I feel as if I've been tased by the words transmitted via the phone. I thought I was strong enough to handle these calls. I thought I was mentally prepared. I thought I had achieved acceptance. WRONG. I failed miserably. Crashed big time. And now I'm sitting here with a splitting headache. Dreading the call from the facility in the morning. Panicking over all the what-if's.

If there's a God, please let this end already!

Jeanne C.

@Dio I'm so sorry you and your husband are going through this. I have absolutely no advice but wanted you to know that you’re in my thoughts.

Dio

https://alzconnected.org/discussion/comment/187013#Comment_187013

Thanks, Jeanne. This place definitely helps me feel less alone.

M1

Dio I'm so sorry...That was a wise call on the police's part. Thinking of you and please keep us posted.

Joe C.

Dio, Sorry you are dealing with this. It sounds like the police handled the call well which is a blessing. I hope things are manageable today.

Denise1847

Dio, I am sending hugs to you. That had to be so stressful. It seems that even if our DH's are asleep or in MC, we dread the next thing that will happen even before it does.

I totally understand that you wonder if there is a God at this time with so much suffering. I know there is and I find that when these stressful events occur, I really need to pray to Him to put the burden on Him and it calms me. I have learned that half of my problem is fear and the other half is knowing that I am not in control of the situation and don't know what to do. We are absolutely terrorized by these events. I fall prey every day to making my same mistakes of getting overwhelmed and stressed, but I am working on recognizing the things I can change and the things I cannot, then I pray. I know it is difficult right now to image that a God of love could let these things happen. We are all on a different journey and I believe we are meant to grow stronger and closer to God through these adversities and that there is an eternal life waiting for us. It helps to take the long-term perspective. During these awful times, take this opportunity to pray and ask for help. God takes time to answer our prayers on His timeline, for His reasons and His reasons are always good and for our sake. I hope this helps and doesn't sound preachy because I just want to comfort you. Dio, please take care of yourself and I will be praying for your peace.

mrahope

I have not been in your shoes (yet). Just wanted to add that I'm thinking of you, and understand that words can hurt even though you can do little or nothing with the message they convey. My only solace in such times is to try and forgive myself for what I cannot do and control. I have a feeling that G-d would do the same.

Ed1937

Dio, I'm so sorry. I don't have any words of wisdom. Just know that we're always here for you. Let's hope things are much better today.

White Crane

Dio, I’m so sorry. Sending hugs and prayers.

Beachfan

Dio,

I am so sorry and probably have no useful advice. My DH was easygoing for the most part, but as he progressed, I knew how to push his buttons, but I didn’t. I learned to pick my battles (they were really only skirmishes), walk away, and return only minutes later to find him complacent and confused, but usually compliant. Once placed in MC, on several occasions, I arrived to hear him growling at a caregiver trying to get him out of bed. But it never escalated as they didn’t engage, but just ignored his muttering until he eventually cooperated. (I think had 3 staff tried to handle him at once, there very well might have been a wrestling match.)

IIRC, your DH is in a dedicated MCF at your own (high) expense. I am surprised that staff are not better trained in de-escalating and diffusing combative situations; and if they are so trained, why they are not using effective techniques. In the 17 months that DH was in MC, there was never an incident that was not handled internally (and there were some tense, potentially explosive situations that I witnessed). Again, I am sorry; I am of no help. I think the 911 response was wise; my mantra with DH was always “everybody remain calm, and calm will prevail.” I hope today and every day going forward is better. ❣️ Stay strong; it will get better, I promise.

ghphotog

I know this might sound uncaring but it's anything but. I've been realizing that the burden is too difficult for me to carry. I have have a wife with severe Alzheimer's and a mother with dementia, not as bad as my wife's but too much for me tace care of both so I had to make a choice between my mother and my wife. I placed my mother in MC and she cursed and hated me for it. She's adjusting a little better now but my point is I just couldn't carry that guilt and burden anymore and I had try and just not care anymore. Not the right word, more like harden my heart a little. I had to let it go knowing I made the right choice no matter how hard it was. It was killing me, the sadness and guilt.

jfkoc

I think the correct response would have been for the first person to say that they would come back later. The facility escalated the problem by calling in more people to "handle" the situation.

I would have a calm visit with the head person to see what the training is for difficult behavior which is not at all unusual.

You have placed your husband in a facility where you expect your husband to get professional care. That is what you are paying for. That is what he should get.

All of that said the fact is that facilities are short in staff and in training. Is there a solution? Probably not.

It is very sad.

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Denise1847

https://alzconnected.org/discussion/comment/187040#Comment_187040

What an awful situation to be in. I am caring for my husband and live close by a sister who I suspect is having cognitive decline. I t scares me if she gets worse as I know I won't be able to handle them both. I get the image of a man trying to save two drowning people, knowing he has to make a choice. He really can only save one or all will perish. You didn't abandoned your Mom. You made sure she has the care she needs. Please don't feel guilty about your choice. Any one of us would have done the same.

JJ401

—— DH got combative again when 3 staff tried to change him to get ready for bed. 

I’d consider looking for another memory care. Why force him to change immediately?

Occasionally MIL would decide she didn’t want to change for bed or even go to bed. She’d wander the common area until she either went to bed in her clothes or settled on one of the couches in the common area. Usually she’d be willing to charge in the morning and life went on. And on the days morning was still difficult, she’d change and be in bed early the next night.

Dio

Thanks, everyone!

I suppose this is why many MCFs won't take Lewy Body Dementia patients. So sad. I'll update when I can. So far this morning, DH was still in a foul mood. Not happy they "woke him up" for breakfast, which is strange since his eyes were open, and this is the normal routine. Refused his new med claiming he doesn't "like it." Still, he took the medications with a little redirecting, ate breakfast and then went straight back to bed. He has completely disengaged from any activities. More delusional--e.g. claiming he has to go pick up his car and that there's a lawsuit going on surrounding his car that he needs to take care of.

Victoria, perhaps you're right that the night time staff didn't have adequate training. It wasn't changing clothes but changing his diaper that was needed for bedtime, and this was after several attempts already since 8pm. By 10:30pm it was way passed lights out. During the day, they typically would leave him and return later to change his soiled diaper and pants. But nighttime, they probably didn't want him to sleep in a soiled diaper. Before placement when he was at home, it was WWIII every time I tried to change him. Morning. Afternoon. Night. And one of the many reasons for placement. I didn't feel safe. He's 62 and still quite physically strong.

His aggression/combativeness is progressively getting worse. We've adjusted meds 5x in 6 months (low and slow) since placement. He has a dr's appt coming up in a week. I can only hope... This is such an evil disease.

Chammer

I was listening to a Tam Cummings podcast this morning and she mentioned Nuplazid as the antipsychotic of choice for LBD. He may already be on that med and I am telling you something you already know. If so, just scroll on by!!

Dio

https://alzconnected.org/discussion/comment/187086#Comment_187086

Thanks! This is news to me.

ImMaggieMae

Dio, I hope this will point out to the MCF management that they need better training for their staff both night and daytime. These people are supposed to be professionals and trained to handle such situations. I wonder if staffing shortages are to blame? This isn’t your fault. You trusted this facility to have the knowledge to deal with these types of situations. Judging from postings here, this type of behavior isn’t unusual. Perhaps his medications need to be reevaluated and updated as well. Maybe low and slow is too slow?

ThisLife

Dear Dio, sending you hugs and caring thoughts.

Chammer

I just looked up Nuplazid and relistened to that part of podcast and per Tam and Nuplazid site it is for Parkinsons hallucinations and delusions but is used off label for LBD as well. Can't hurt to at least investigate.

toolbeltexpert

Dio so sorry your going thru this. Hopefully his meds with smooth him out.

jfkoc

I did not know that your husband has a probable diagnosis of Lewy Body Dementia. It is an animal unto itself.

My husband was thought to have it and it was difficult to find a Dr who really understood it.

The meds are different from AD. What is your husband taking?

I found these people very helpful;

Lewy Body Dementia Symptoms, Diagnosis, and Treatment (lbda.org)

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Dio

https://alzconnected.org/discussion/comment/187104#Comment_187104

He's currently on:

• 100mg Quetiapine/Seroquel morning and night, 50mg 2x PRN
• 5mg donepezil/Aricept morning only (was 10mg but cut back to 5mg cuz of night terrors)
• 250mg Depakote (sprinkles) morning and night (added last month)
• 10mg Melatonin night
• weaned off of .5mg lorazepam/Ativan when Depakote was added

The MCF director felt DH's dosages are way too low. However, his neurologist who specializes in LBD (also the head of Alzheimer's Disease Research Program) wouldn't budge and didn't want to change too many variables at the same time. It took quite a bit of convincing to have him agree to add Depakote. It worked for a couple weeks, then here we go again. Is this the slippery sloped roller coaster everyone talks about when LBD is mentioned? I just hope we can find the right combination of meds soon.

BTW, DH is the first resident at this MCF who required a 911 call (ambulance calls, notwithstanding). And I do understand why it was needed.

Chammer

@Dio there is a podcast and Facebook group called "Lewy Body Roller Coaster Podcast group." They may have additional knowledge and recommendations for specific LBD diagnosis issues.

Beachfan

Dio,

I owe you an apology. I didn’t realize all the extraneous issues surrounding your DH’s condition- - the many meds and combinations thereof, the LBD dx and all that it entails, the med trials and changes, the obvious expertise of the Medical staff who care for him, the willingness of his MCF to work with you……all of this makes my DH’s garden variety Alz journey look like a walk in the park. I hope you are able to find the combination of meds and treatment that will make his caregiving easier and above all, ease your stress. I should not be passing judgement on the MCF and their handling of your DH’s situation since I know next to nothing about LBD. I am praying you are nearing a satisfactory solution and peace for you and for your DH.

jfkoc

Thanks for the info.

I have gone back and looked at my husband's meds. He did take Seroquel. He took Clonzapan (sp).

I remember Dr Hershey saying that Depakote had never been proven affective. All meds were started/stopped by weaning and only one at a time. All meds were titrated.

Dick's diagnosis path was MCI>Parkinson's ( non-motor function)>LBD.

I do not recall ant discussions or events making LBD more difficult. The meds, of course are not the same.

You and I are/were lucy to have Drs. with LBD knowledge.

Home - Lewy Body Dementia Resource Center (lewybodyresourcecenter.org)

Iris L.

Aricept can make FTD worse. I don't know about its effect on Lewy Body Dementia.

Benzodizepines (Ativan) can be stimulating instead of calming in some older adults.

Iris

Dio

As the saying goes, if you've seen one LBD patient, you've seen one LBD patient. There's no cookie cutter. While many commonalities exist, the individual's physicality and reaction to drugs are unique. It's a mad mad ride. I'm in the tumbler of the dryer and wish I could push stop. If anyone has read my journey (on the old site) you'll have a glimpse into my wicked journey. There's been so many "incidents" since that posting. Too many to even recount or post. Hence, final decision to place DH. Even so, I'm a realist. I knew placement wouldn't be the end of our troubles. I've always worried about eviction due to endangerment to others in a facility, or refusal to take medications, which is in the contract. Moving from a shared room to a private room is the least of my worries. One day at a time. One day at a time.

Please, no apologies needed. Everyone here has contributed his/her own journey and experience, and I've learned so much from each facet. I've learned things I never knew I needed to learn. Much gratitude to all!

Dio

https://alzconnected.org/discussion/comment/187184#Comment_187184

Thanks, Iris. Ativan was given to DH in the hospital for a catatonic episode. It was the only thing that worked intravenously. Then continued but weaned off after discharge from hospital. But was put on it again when all other drugs (still have a bag full of unused ones) didn't work. Recently, he's not responding to it any more, so got weaned off.

He was given rivastigmine/Exelon when diagnosed with probable LBD, then changed to Aricept. Although these drugs are FDA approved for treating AD, I think rivastigmine/Exelon is the only FDA approved drug for LBD but more so for Parkinson's dementia, and off label are Aricept and galantamine/Razadyne. However, there's no strong evidence which one works better for LBD. And another off label drug Memantine/Namenda is sometimes prescribed as a supplemental drug with mixed results. But all these are more or less for helping with cognition. Behavior management drugs are a separate ball of wax.