Don't ever trust your caregiver if they tell you are being placed somewhere temporarily

Michael Ellenbogen

If  was you I would not trust those words and put a contingency in place if you never want that to happen.

Iris L.

Michael, why did you post this? Did something happen to you?

What sort of contingency are you talking about?

PWDs are advised to choose a caregiver who has their best interest.  By the time placement is considered, the PWD usually is not in a condition to make decisions based on factors going on with that person.  They need to be able to TRUST the person they chose.  

A well-thought plan for the future is something to plan while still in the early stages.  A good residential facility can be part of a well-thought out plan.    

What are you thinking about, Michael?

Iris

Michael Ellenbogen

This did not happen to me but I have now heard about this a few time. I am not sure what can be done but they should definitely speak to a lawyer a head of time. People cannot be locked away if they don’t want to be there. You need an expert lawyer. Like I said I never want to go and I rather die before I end up there. That is my choice and it has not changed or will ever change.  

French

Perhaps I shouldn’t post here, but I find this post unfair. I agree with Iris, most of the caregivers can be trusted and do their best.  

My partner is 52 years old and diagnosed Alzheimer in 2019. He is now about stage 6c.

I am still working and have 2 child at home. I am also responsible for their future. My decisions are always taken considering the global situation : children, my partner and me.

In May, my partner agreed to spend 19 days in a MCF so that I can rest a little. He didn’t liked it. He came back afterwards as scheduled. He is now in another MCF for 1 month. In 4 days He will come back home also as scheduled. Another respite stay is scheduled. It will be 15 days.

He always agreed and trusted me. I have told him that I won’t be able to take care of him very long. He knows that these respite stays are also trials so that we know (he and me) where he will be best when needed. 

I won’t lie, at a moment (soon because I know that it won’t be possible to continue in-home care), when I will be sure I will have found somewhere where he is really fine, I will tell him that he will stay as long as he will be fine there. It won’t be easy. And I won’t be proud not to continue in-home care.

He told me many time to quit him, in my interest. I always refused because I knew that he needed me more than he was aware. I also know that nobody would have taken care of him. I won’t sacrifice everything for him because it is not what he was wanting and because my children also need me, but I always did the best I could for him and will continue. 

you can read recent posts of caregivers who placed temporary their LO, but at the end of the period decided to let them there. I don’t know who could throw the stone at them. Perhaps they have lied, but they did it because they noted that their LO was better taken care there. They have been very courageous to go so far in the caregiving and if the disease wouldn’t have deprived their LO of their awareness, I think they would express gratitude.

Iris L.

To clarify, I said PWDs should choose a caregiver/POA that they trust to do right by them.  

Michael, you are right, this should be decided early in the disease process.  Alzheimer's Disease and the other dementias are so DIFFERENT from other diseases that PWDs and their families need specific guidance about the future and their options.  They need to decide NOW, not later.  And they do have options, not everyone is interested in the final exit.

This month would have been my mother's 100th birthday.  Thirty years ago she was bed-bound and wheelchair-bound from cancer although 100% lucid.  One of my proudest moments came when a doctor asked my mom a question, and she replied, "whatever my son and daughter decide for me."  She had that much FAITH and TRUST in us although we had never discussed this before.  This was in the days before POAs were prevalent, because we did not have one.

PWDs and their families are rightfully fearful of what Alzheiner's Disease will bring to their lives.   AD is a terminal, debilitating illness and it has the propensity to bring down more than the patient.  People need to be warned and encouraged not to let this happen! Home care until the end might be possible for some but if not, what are the alternatives?  A well chosen facility is one that MEETS THE NEEDS of the PWD and the family.  The members here post often about choosing the BEST AVAILABLE and avoiding the not so good facilities. 

Some like me, do not have a family or friend caregiver, and so will have to rely on public services and professional caregivers. It's hard for all of us. The best course is to prepare and plan as best we can.

French is doing a great job.  She has made a well thought out plan considering everyone in her life, and is going forth.  Again, it's very hard.  We do the best we can.

Frankly, based on what numerous other caregivers have posted, I think it is a toss-up of home care vs facility care.  Many caregivers are CLUELESS!   Regarding them, I would prefer a nice clean facility with competent educated and trained professional dementia caregivers.  It's hard all around. 

Iris

Michael Ellenbogen

French - its not all caregivers but there are many that are not open and honest with the person. When you also have young kids at home I also believe that is very hard And I agree some should not even be with the caregiver as they are clueless on how to take care of them. That is why the person with dementia needs to plan early and make sure they all know there wishes.

Michael Ellenbogen

While I am an advocate for dementia it is important to know that I need to stand up more for those of us with the disease. So may already stand up for the caregivers. Too Many.  I wish it was not a battle between the two but sadly those with dementia need a voice.

jfkoc

Would I have ever told my husband he was being placed temporarily? Yes. If placement seemed to be the best option and telling a lie was most comforting tool.

I do not think it should ever be a battle. Instead a learning experience for both with the bulk of the learning up to the care giver. I do not see it as standing up for but support and understanding.

Caregivers usually fall into this role with no experience and little to no professional support. The choice to place is not easily made but almost always made after serrious thought that it is the best decision. Unfortunately one thinks that  their loved one is going to get better care than they can give. Too many times this is not true.

My husband made his wishes known and fortunately they were met. He stayed at home until he died with progressively more outside help. 

I myself think differently and would rather be placed at some point but my choices of facilities are 1/2 way across the country. 

Iris L.

Trusting a family member can be very problematic, but not because of placement in a facility.  Placement is a viable option for PWDs with advanced cases.  It's hard for the PWD and the family member to be on the same page.  For example, yesterday I told my cousin I no longer wanted my timeshare because I will no longer be traveling on my own.  She told me I should keep my timeshare but travel with my other relatives.  I just said I don't want it!  My other relatives are not interested in whether I am alive or dead, why would I want to travel with them?  My cousin has no idea what a blow that was to me.  Personally, I will feel more comfortable with strangers, if they are knowledgeable about the challenges I am facing and if they can make decisions from my perspective, not their own.

Iris

eaglemom

Iris I'm sorry what your cousin said to you upset you. Frankly it would upset me also. You've made up your mind to sell your timeshare, period. That's a statement. You weren't looking for advice, you were simply making a statement. 

Your cousin probably "thought" the suggestion was a valid one, which it was not. The wounds family riffs make are deep and uncomfortable. (We're living one ourselves.) We've found our friends have our best interest at heart. Where as our 'family' is cluess, by choice, their choice.

Give up the timeshare and free up one more thing on your plate.

eagle

Iris L.

Eagle, I'm sorry you are experiencing family discord. The timeshare was not the issue, but the family conversation.  Actually, for me, I feel like a weight has been lifted off my shoulders.  Now I know who not to rely on for constructive support.  It's better to learn this sooner rather than later.

Iris

eaglemom

Yes Iris, family discord is never a comfortable thing to go through. But like you, we know whom will always step up to the plate & whom will have ever excuse under the moon. Or, as in our case, totally ignore the situation. 

I've come to understand that unless your on this journey, you can't even begin to imagine how it is. We are by far closer to our friends than the few 'family' members we have. Its taken me awhile to accept that, but one can't make someone care. You've figured that out long before I did.

Yes, move forward and be the best you can be for you. 

eagle

Iris L.

Eagle, this is why these online support groups and real-life support groups are so important.  We desperately need input and support from those in the know.  People who have no knowledge not only cannot help us, but they can be harmful to our psyches.  People like us, patients and caregivers, are facing uncharted territory--we need support!  

Iris

Iris L.

Mimi, this thread is two years old.

Iris

Mimi50

Iris I am new at this and it shows. Thank you for letting me know.