No offense intended, but.....

RobertsBrown

 

As far as I know, none of the people on this support forum are qualified in any way to take on the responsibility for the full-time care of a person with debilitating mental disease.

For most of us, we believe that our vows of love and care are binding, and so we do the best we can in a miserable situation, but we delude ourselves.  At first, it’s not too bad, and we think we can handle it.  It gets harder, and the demands become increasingly unreasonable.

We have all become proficient with tasks we didn’t even imagine we would have to do.  Unspeakable things become mundane.  Insane things seem reasonable.

Unfortunately, caring for our loved ones that are suffering severe mental decline is not our only problem.  It’s *another* problem on top of losing our money, our security, our other relationships, and watching the daily destruction of our possessions and homes.

So, I am posting this cheery message to remind you of something important:

The situation you find yourself in is completely absurd.

It’s not your fault.

Nothing in life has prepared you for this.

There is no good solution, just as there is no cure for this disease.

Your loss is 100% certain.  It’s guaranteed.

The best we can hope for…the absolute best outcome….is that we somehow survive the process of trying to keep our loved one comforted and comfortable, and still have moments of grace.

I find it’s important to remember that if you can’t win, you can’t be accused of failure, even by yourself.

Arrowhead

 It is a lose-lose situation. 

All we can hope for is to survive.

JoseyWales

I completely agree with you. Nothing in life prepared me for this. There is no good solution, and the disease marches on whether or not I fight it.

I thought I could handle this. I spent years as a teacher of students with emotional disabilities. As DH's disease progressed, I saw similarities, and knew how to redirect and deal with problems as they arose. 

What I didn't count on was the lack of sleep for both of us. The delusions that couldn't be redirected. The lack of help from the medical community. And the way this destroyed OUR lives.

Placement for DH was the only way I can survive this. And it's still not easy.

Nowhere

No truer words spoken. It’s impossible to be in control of this disease. It’s a ravager of its host and host’s loved ones.

DJnAZ

I absolutely agree..."placement for my wife was the only way I can survive this. And it is still not easy".

Sligo177

Hi Robertsbrown,

Thank you for sharing your insight, it helps to have someone validate what we've all been struggling with.  And we will do just about anything (My God, the things we have done and continue to do!) for the person we love.  But - we need to survive this.  Thank you so much, and take care of yourself, too.  MC begins today for me, happy and sad, relieved and guilty, but it's safety for my DH, and I will focus on that.  Have a good day.

Paris20

I have these thoughts every single day.

Ellsie

Thank you for this. It brought tears to my eyes.  I am still at the beginning stages, but I am going to print this to look at again as things get worse.

MN Chickadee

Very well said. This is a really important aspect of caring for a PWD that doesn’t get put into words enough. Thank you. I will be bookmarking it for friends and family who find themselves thrust into this.

Crushed

 

 Every gambler knows
That the secret to survivin'
Is knowin' what to throw away
And knowin' what to keep
'Cause every hand's a winner
And every hand's a loser
And the best that you can hope for
Is to die in your sleep"


  kenny rogers the gambler
  

Bill_2001

Agreed, but sadly the elephant in the room that no one wants to talk about is money.

Placement is cripplingly expensive. Our choices are three: Have millions of dollars*, be nearly totally broke (Medicaid), or soldier on doing it ourselves.

I have chosen the third option. It is difficult -- borderline impossible most of the time. But then I get an occasional glimmer of lucidity from my dear wife, and at that moment, I am glad she is still right next to me.

I may need to throw in the towel someday; maybe sooner, maybe later. But it won't be today.

*Or a very high monthly income stream. US Census Bureau data indicates that the average US income for retirees is $3,946 per month per person. Double this for a retired married couple, or just under $8k/month. This is about the same as the cost of placement for one person. Just what is the spouse supposed to live on? Call a Certified Elder Law Attorney and get the paperwork ball rolling so you are not impoverished. I have one at the ready if it becomes necessary. What a pain in the keester. Or just soldier on doing it yourself like I am doing.

Yes, money is an issue for most of us, though few will talk about it.

Scooterr

  You know your right our loss is 100% and that's a guarantee. For those of us that have chosen to keep our LO at home and even those who have their LO at a mc this disease will take them. I have chosen to keep my wife here at home or  should I say we have chosen to keep her here. She was diagnosed in 2019 with AD. While she was still able to make reasonable decisions we had a long talk about the out come of this disease and what she would want towards the finale stages. The only thing,  and I mean only thing she asked for was to be at home. We've been married 40 plus years. I made her the promise she would stay at home no matter what. I owe her that!  She has given me everything, she has made me who I am, and trust me she put up with a lot of BS. 

   I will lose everything? this is true, but once I lose her, I've lost everything. Materialistic things have no value to me at all never have and never will, our 401k, savings and retirement mean nothing without her. Right now it pays the bills and provides food, and that's as far as I see it.    

Your right I'm not a qualified mental health professional, hell there's days I'm so low I can't even see the daylight, and I know it's slowly taking me apart physically and mentally. But like Bill said, "we soldier on."  I can assure you one thing, I can show her more love then any health professional around, from making her dinner, to showering her, to cleaning her nasty underwear. I made a promise to a dying lady back in 2019, she would and will stay at home come hell or high water. She will lose this battle, but I will be by her side every step of the way. Yes, I made this decision, yes we'll lose, but at the end, of this I can say baby I did it. And I sure don't care what anyone has to say about that.

Joydean

Thank you Robert for voicing what many of us feel! I do hope you are trying to care for yourself with all that is going on.

alzsarah2

You are so right but everyone is different in how they progress in the disease and every caregiver has a limit to what they can or want to provide for their LO. You never know your limits or your capabilities until you reach them. May we all have the strength and insight to know when enough is enough. Good luck to us all. The road is SO challenging!

ImMaggieMae

Robert, you’re right that the best we can hope for is that we somehow survive the process of trying to keep our loved one comforted and comfortable, and still have moments of grace. We do the best we can. And it’s probably the most unimaginably difficult thing any of us have done. Everyone is different, but I  can’t imagine my husband living out his days in any place other than his home that he worked hard for over the years with me as his primary caregiver. 

One of our forum members, Scooterr, said in a post months ago that he would care for his wife “until my wheels fall off”.  Somehow that stuck with me through some of the toughest times times that would have been unimaginable before.  There were trips to ER and a couple weeklong hospital stays to get medications figured out that would keep him from engaging in some of the constant bouncing off the walls repetitive behaviors or pulling out IV’s in the ER requiring medications and a restraining vest.  The first time I was allowed to visit for a few hours per day, but because of Covid, I couldn’t spend the night. The second time I was allowed to stay for the 5 days he was there, in a recliner chair next to his bed. It kept him calm.

I will do everything I can to care for him at home.  A couple months we hired a caregiver who comes in 3 days per week for 4 hours to give me time for errands and grocery shopping. I imagine we will need more hours and help at sometime in the future. But it will be here.  We have been married for over 43 years and I too, will be here until my wheels fall off.

Just Bill

I too made a promise I'll never drop her off anywhere. She has a deep rooted fear of being committed to a mental institution. She saw her mother put away and it left a scar. So I will be the one escorting her off this planet from home. Compared to a lot of other members of this group I consider myself very lucky. We are both 62 and I have been a physical fitness junkie my whole life so the grind doesn't beat me up as much as if I was older or had an infirmary of my own to deal with too.  Also she is a petite woman, only 90lbs so if I have to toss her around like a bag of grain I can. Just kidding I wouldn't do that, but at that weight she is very easy to manage. She is also very cooperative and wants to be normal that helps a lot. She isn't normal and getting less and less normal as the days turn into weeks and weeks turn into months. I just take it one day at a time and deal with whatever I have to deal with when I have to deal with it. But the last face she sees before she dies will be mine. I am ok with whatever I have to do to make that happen. And when it's over I will have zero guilt and I can move on to the next adventure whatever that may be.

Faith,Hope,Love

Thanks for the post!!  I agree that this is something we're all dealing with and a common bond that binds us all together.  I too, will print this out.  It's important I read this when I have days I'm down in the dumps.  It always helps me to know that you all are here and respond to my questions, comments, etc. with loving kindness.  You are the ones that keep me going.  I couldn't do this without all of you!!  I wish I could *hug* each and everyone of you.

White Crane

I have tears in my eyes reading some of your responses to this post.  Yes, it is a losing hand we've been dealt and yet I love this man and am doing my best to keep him home and to keep us safe.  Sometimes it really gets to me and I go upstairs and do a very soft scream and cry out to God to help me.  He does but it isn't always easy.  DH has a fear of being put in a home and I will do my best to keep him in our home as long as possible.  Possessions that once meant something to me no longer mean anything.  It is just "stuff" without my husband to share it with.  So, one day at a time, I continue on this journey that I didn't ask to take and make sure to hug him and tell him I love him several times a day.  Maybe tomorrow I will write a post telling how I am about to lose it but that is all part of being a caregiver.  Sending much love and hugs to all.

Brenda

MaryG123

On the other side of the coin, my husband and I (45 years married) long ago, made a pact that we would not put each other through the kind of pain and suffering that some of you are experiencing as caregivers.  There will be no guilt when one of us has to go into professional care, and it doesn’t lessen our love.  He knows he’ll be better off with someone other than me taking care of him, and vice versa.

saltom

My DH and I, too, will probably opt for LTC when the need comes. For one thing our LTC insurance only covers out of  home care. And mainly at our age it would be a lot harder if I wore myself completely out and our daughter was stuck caring for two invalids.  Better I can still function and visit my husband knowing he is well cared for.  I don't see any right or wrong way to do this. It all boils down to what is most successful for the LO and caregiver.  Bless all of us who muddle through trying to do the very best we can whatever the circumstances.  And how fortunate we are to have a resource like this to hear about all the multi faceted sides of dementia life to help in making relatively informed decisions.