When is the right time for AL/MC?

GolfnutCA

My wife is 55 and was diagnosed 2+ years ago.  She's stopped driving.  Our relationship has gone to heck because we fight a lot.  She drinks a ton (I had to lock all the alcohol in my home office), and she gets very argumentative.  The woman I loved is gone.  Not a lot of love left on my side.

Thanksgiving was a challenge.  She was awake for about 30 minutes after the guests got there, then went to bed.  We woke her up for dinner, she ate, didn't say much, then went back to bed.

Friday night I went out for a bite and came back, house was dark, but she had left the gas fireplace on, but no flame.  The house was full of gas.

I went with my son and toured some AL/MC facilities.  She is so young compared to the other guests and the MC wards are really depressing.  

People tell me to bring in outside help to the house but I don't think that will help much.  In general, she sleeps a lot.  I work from the home so she's not much of a bother during the day. It's at night when she sundowns that she gets challenging.  I blame myself too because I have little if any patience and things can escalate.

The frustrating thing is I was all convinced it was time to move her and today she seems clear as a bell.

Any advice on when the right time for AL/MC is?  

Michael Ellenbogen

You probably want to go to the caregivers board as you wont like what I have to say.

GolfnutCA

I will do that, but I'm still interested in what you have to say.

Michael Ellenbogen

While I do not know you need to learn a lot more about this disease very quickly and need to become very understanding that it is the disease creating the issues. I don’t know here wishes but I would never want to end up in home. I consider them jails and they really suck especially when you are that young. Would you ever want to be in one? Home help would be a great way to start if you can afford it. With the proper education they is so much more you can do and technology can be come your friend to help you and her saftey.  

jfkoc

I knew that my husband, like Michael, had very strong opinions about placement. He was still at home when he died.

When to place? I think when the pros on the place list become longer than the pros one the stay at home list. 

One thing thing to realize is that your education about caring for your wife will have a huge impact on how long she can remain with you at home.

Another thing that prolongs the need for placement is outside help. 

Do visit the caregiver boards for some more information on things like sundowning.

GothicGremlin

This is such a difficult question, and I was in a similar boat as you, GolfnutCA.

My sister was in her 50s when she was diagnosed with early onset. I just placed her in memory care in October, so she's almost the youngest one there.

While it was a hard, hard decision, Peggy has told me since that she's glad she's in memory care (!!!) 

I think one of the important things to consider is the person herself. In my sister's case, she really likes to be taken care of - always has, probably always will. So in memory care, if people are looking after her (and they always are), she's good - even if there are a lot of rules, confinement, etc. Michael considers them jails, and Peggy (before she moved in) considered it a form of punishment, as if she had done something wrong.

I made sure I was there everyday for a couple of weeks after I placed her so that she'd know she "wasn't being bad", and to reassure her that I would be there for her.

So far it's worked out.

 

Iris L.

Golfnut, it appears that you do not understand dementia or you are unwilling to accept what it means.  It means your wife is no longer able to be aware of safety, along with many other things.  It has been up to YOU to dementia-proof your home in a similar way you would child-proof a hone for a toddler. She should not have access to the stove or the fireplace or anything flammable. Put away all chemicals they may think they are beverages.

As far as the alcohol, PWDs no longer quantify how much they drink.  This can apply to food also.  YOU have to monitor food and drink.  There are many threads on alcohol use/abuse--you can dilute with grape juice or find another tactic.

Be aware of anosognosia.  The PWD truly believes she is fine and sees no need for doctors,  medications or changes in her routine.  If you try to confront her with reality, she will resist and become upset.  So you will have to use work-arounds to get things done.  Learn from the members.

Placement can happen at any time because it means where she is getting the best care.   There is much you can do at home, but it requires a change in your thinking.  Read the threads on the Spouse/Partner board, they are like you.  

Also read the online reading material, "Understanding the Dementia Experience."  I don't have the link but it is on many threads.

Keep reading and keep posting.  Caregiving for a person with dementia can be challenging but it is doable.  You do understand that she will steadily decline, then it is terminal?

Iris L.

GolfnutCA

Of course I understand it's terminal.  Absolutely.  I understand the disease.  I'm not in denial.  In fact, I think I'm the only person in the family who gets it.  My FIL thinks she needs to stay in the house as long as possible but it's killing me.  

Trust me, I get it.  I've got a front row seat.

Iris L.

GolfnutCA wrote:

  My FIL thinks she needs to stay in the house as long as possible but it's killing me.  

Ultimately the person who is the PWD's designated POA will make the determination of care decisions.  Family dynamics can be disruptive, especially when the PWD is so young. 

You might want to discuss your concerns privately with a Care Consultant at your local Alzheimer's Assocuation.  The Care Consultant is a social worker with special expertise in care of the PWD and family dynamics.  You can reach the Care Consultant at the Helpline 1-800-272-3900.  Ask specifically to speak with a Care Consultant, one is available 24 hours a day.  There us no charge for this service.  

Do visit the Spouse board.  How to deal with family members is a common topic.

Iris