DH 1st week in AL - A roller coaster!

Raez

My DH move in date was 11/7.  On 11/8 and 11/9 he tried to leave, they were able to stop him in the parking lot and he told them he was "walking home ."  The directors feel that it is a mistake for me to visit every day and that DH needs some time to adjust without me there. They feel in 2 weeks time he will see that as his home. I agree because each time I visited, he was fine until I left and then he started acting out, irate and anxious.  He is now calling me every hour, and has called me 14 times today alone.  I am at my wits end. He has always had a very strong will and been a controller.  Sometimes it feels like he is manipulating me as he did before Alz diagnosis.  Any ideas, shared experiences.  There is only 2 MC facilities in our area and neither are good.  This AL center is highly recommended and the staff are wonderful, but they can only take so much.  I am afraid they will tell me he has to leave.  Help!

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Jo C.

Hello Raez; I am sorry this is happening and can imagine how stressful and upsetting this must be for you.  Victoria is correct; it may be that an AL setting is not sufficient for his care.  Memory Care may be better.   I noted in your Profile that he has Parkinson's Disease and Alzheimer's.  Was the diagnosis made by a dementia specialist or primary care MD?  I ask this because with Parkinson's, the most common type of dementia is Lewy Bodies Dementia rather than Alz's, and some of the issues you mentioned may point not only to Parkinson's, but perhaps to LBD.  If this is so, then medication may well have to be adjusted if his diagnosis is altered for dementia type.  Some of the meds used for Alzheimer's Disease can be problematic in LBD. It would take a dementia specialist to determine accurate diagnosis.

It is good that you are not visiting at this time.  Being that he is exhibiting traits he had prior to onset of dementia plus ramped up behaviors indicates he may be needing medication adjustment and for that it may be best to refer back to his dementia specialist who would be on the cutting edge of his needs rather than his primary care MD.

If the many phone calls to manipulate you are over the top, you can simply use or stop using the answering machine or block his calls. If you continue to answer and dialogue with him at this point, nothing changes.  Also, it may be that the facility can also find a way to limit his calls.

It is true; an AL setting will not continue to try and manage such a significant set of behavioral issues; they are not staffed for that.  Victoria is correct, it will be far best for you to begin to assess other MC Units/Facilities even if they are farther away.  However; some MC units will not continue to keep a person with severe behavioral problems; just be aware of that.  If he becomes a safety issue for other patients and/or staff, then no facility will keep him until the behavior has been controlled.

Another option may be that due to his ongoing agitation and other significant negative behaviors that do not respond to lesser measures, it could be that he may benefit from an involuntary admission to a GeroPsych Unit at a local med center.  He would be assessed on a 24 hour continuum; have meds adjusted while he is monitored for effectiveness and any possible side effects.  If this route is taken, one should contact the Psychiatric Social Worker asap and let him/her know that he is NOT going to be taken home again and a placement will need to be found. The SW should be able to give you a listing of facilities that could provide his care for you to screen.   Never let anyone badger you to take him home, you do not have to accept that.

Sometimes, some of our Members must place their Loved One a distance from home, but it is the only option available.  If care is good, and their LO is secure and safe and receiving care with 24 hour staff and there is more socialization and activities to watch or take part in, and meals and snacks all of that on a schedule with good routine, that is often a positive outcome for both the LO with dementia as well as the family member. 

Remember that you are not abandoning him; not only will your husband have a period of adaptation after placement, you also will have your own adaptation period. Hovering will  perpetuate the negatives at this point.  It is truly very difficult with the heart involved and wanting to ensure our LOs are alright.  

 You can request someone from the facility to contact you each day or you can contact an appointed person for a once a day information contact as to how he is doing, or perhaps every other day; but not good to make multiple calls per day.

I hope you are able to be strong and let him adapt to his setting and perhaps to even begin to look for other facilities as a Plan B, and to consider the possibility of GeroPsych services if needed.  We know that if we do the same things in the same way, not much will change.  If he knows from past history he can manipulate and badger you into doing his will; that may have to be adjusted for any success to be achieved.

The Alzheimer's Assn. has a 24 Hour Helpline that is available 365 days a year and can be reached at, (800) 272-3900.  There are no fees for this service.  If you need to talk to  someone for support and even to vent; you can make contact with them.  If you do call, ask to be transferred to a Care Consultant.  They are highly educated Social Workers who specialize in dementia.  They are very supportive, have much information and can often assist us in our problem solving.

Let us know how you are; this is very hard and you are doing your best under difficult circumstances.  Hang on and let things be worked through, it will eventually be managed.

Sending best wishes your way,

J.

Gig Harbor

My husband was getting his phone confused with the TV controller so I took the phone away. Within a few days of not seeing it he forgot about it. Would it be possible for the staff to take his phone and maybe he would forget about calling. When I placed my husband I didn’t visit for three weeks. At that point he was happy to see me but when it was time to leave I said I had to go to work and he accepted that answer. I still use it after 5 months. He initially became anxious and a little aggressive towards other residents. His ARNP started him on meds and increased the dose until he became calm for the most part.

Gig Harbor

I just realized that your husband is in AL and not a memory care. Will they be able to protect him from leaving if it is not a locked facility?

Quilting brings calm

Stop answering the phone every time he calls.   It’s very hard to do, trust me I understand.  Some days my mom would just keep calling every 3 minutes anyway.  But you have to - even though the repeated rings are upsetting - the repeated conversation about why they are in AL m, why x is happening, the crying, is even harder to take.  The AL will call you if you are actually needed. 

The leaving is indeed a problem.  The AL would be in trouble if he left the property and was injured, or suffered from exposure to the cold.  My parent’s AL asks them to wear a call pendant that also sounds an alarm if they get a certain  distance outside the building. It’s set so they can go outside on their individual patios. However, I’m not sure what attention gets paid to it because my mom often gets in my car with her pendant on rather than leaving it in the room.  No one ever calls me to see if she’s actually with me.  She is coming from the lobby where the front desk is though. 

One of the other residents had a form of dementia and was progressing through the stages - wearing the same clothes, etc.   she began leaving the building at night.  That’s what caused the AL to ask her to move to an MC.