Relief from placement guilt

Nowhere

For those who’ve placed loved ones in facilities: Remember when and if guilt attempts to creep in to your psyche- you didn’t begin the business of abandonment, as you were first abandoned by your loved one advancing through the stages of Alzheimers. Every care giver and every Alzheimer’d individual has varying stories, symptoms, and experiences. Hate the disease not the afflicted, and that includes you! It’s been said the disease is often harder on the loved ones. My husband had been in memory care two years after a sixteen year old diagnosis and if asked he says he’s been living in his present home “about one week”. It’s been very hard on both of us, but in his situation there is some kind of twisted grace that he forgets. Something we caregivers cannot seem to do.  

I’ve been holding on to the depressed thought that I was responsible, had broke, and placed him. I let go. But that’s not the whole picture and so, not accurate. He was broken and he let go, first. I was struggling to keep us both afloat. We’re bobbing now, individually, because I couldn’t carry on in a healthy manner for the two of us.

In his facility yesterday, I saw community and kindness. I saw residents with little to give reaching out to each other with a smile, a pat to have a seat, and to share a cute story. Beauty can be found when one sits back and is witness.

Mint

Thank you for sharing this

Ed1937

Nowhere wrote: 

I’ve been holding on to the depressed thought that I was responsible, had broke, and placed him. I let go. But that’s not the whole picture

In fact it is totally false. That kind of thinking has no upside to it. You accepted the fact that he had dementia. I remember when you went through terrible times with him. Now you have to accept the fact that you did what you could. Nothing less. He's a lucky man to have you.

TheMonck

Thank you for that.Almost a year now i placed my DW.So hard to see her slip away more each week.and like you say,i see other resisdents show kindness.

Beachfan

Thank you, Nowhere. Very thoughtfully and eloquently written and so true.  And I heartily agree with Ed. There is/was no reason for guilt on your part, now or never.  Those of us who followed your journey recall the heartache you suffered and the lengths to which you went to help your DH.  You are stronger than you know and he is fortunate to have you by his side.  

For my part, having placed DH 16 months ago, I have never experienced guilt.  Rather a deepening sadness as time passes and he fades away little by little, before my very eyes..  And you are so right…..there is beauty among the afflicted.  Because DH is just about totally unresponsive, I spend much of my time “visiting” with his cottage mates.  They are delightful.  

M1

Right there with the rest of you.  Coming up on a year and it makes me sick nearly every day.  I still weep, especially weekenbds are very hard.  I can only visit when there is someone to go with me, going alone just results in her being unhappy and begging me to take her home.  In limbo about moving her to a different facility (I hope, I hope, but no word yet).   Despite my best efforts I think the folks at the current facility are "offended" that I have opted to move her if I can.  They were uncommunicative before and only worse now, which just exacerbates my worry.  My partner is refusing food and self-isolating in her room.  Nowhere I agree with the "bobbing along individually"--this ocean has separated us, and we are both drowning, slowly.  I hope there is mercy for her in her not remembering it.  she will have her 82nd birthday on Sunday.  A sad milestone.  For all that I'm the younger partner, life without her is bleak.  I'm not feeling guilty, just terribly, terribly heartbroken.

Joydean

Nowhere thank you for sharing. I have read many of your posts and no one could have done more than you did for your dh! I hate the feeling of guilt almost as bad as this disease from hell. Sometimes I wonder just how much longer I will be able to take care of my dh because he is progressing more and more. His doctor tells me dh is reaching the severe stage. I have started feeling anger, not at dh but the feeling of being helpless.   Your words are encouraging. 

M1 I’m so sorry things are not better after all this time. Was so hoping you would have heard from the other place by now. 

Nowhere

Thank you, everyone,  for your support and kind words. My husband’s advancement has caused him to slow down. He has not reidentified with a memory care “wife” since his female roommate passed. He’s no longer running and while he paces and still wonders if I have a car, what is the code to the door, and can I go home with you, he has lost the aggression. When he suffered daily headaches and they turned out to be somatic delusions it was described to me as a story he told himself with his mind being stuck in the reoccurring belief. It is rare to never that he generates new conversation, rather he is like an old record stuck in the groove of this is who I am; and he still knows he wants to be free. “Get me out of here” will be his dying words. Can I hear these words and instead of feeling awful, remember how lively his spirit is? He was and is an adventurer! 

I visit now without my wig as he didn’t recognize the “people” in our wedding portrait. I still wear my “Shelly” fictitious name badge indicating I’m with housekeeping and gardening through my transition back to being me, his wife. We’ll be married forty-nine years this spring.  This past month he has accepted a bathroom shower assistant and she has agreed to being his designated shower aide. For the first time in a long while, I can feel a sense of calm. And, also, as Beachfan experiences, with the disease forging forward there is a deepening sense of sadness and sorrow. 

M1 You’re in the throngs of turmoil right now. This period won’t last like this forever! It will change and there will be ups and downs with ebbs and flows of Grace. Take good care of yourself. Go for a walk, lose yourself in a binge watching tv series, chocolates and port? 

Sending a hug to all the caregivers! 

Ed1937

Nowhere, there is a little bit of good in your last post. I'm glad some things have gotten better, and you no longer need the wig. I know it's still hard though. Best of thoughts still coming your way.

MaryG123

Thank you Nowhere.  You are inspiring!

DJnAZ

Thank you for your well written perspective on what so many caregivers are going through mentally and physically. I needed to hear your words today as my wife begins her tenth month of placement.