Bed available much fast than expected

glitterqueenscare

Hi all,

I have posted in the past about placing my Mom on a waiting list for a facility.  I did so a month ago after finding a local one I liked, with great staff and beautiful rooms.  It was newly built around 4 years ago.  They have a lot of activities and amenities that I really was impressed with too.

At the time I placed her name on the list I was told it would be at least a year, possibly two. I called the other day and spoke with the admissions department manager about some questions I had and during that conversation she said it would likely happen much sooner, possibly even by end of summer.  I was stunned.  

If we don't accept the bed when it becomes available she will be moved to the bottom of the list again.  The timing may be another six months or longer to placement.  Mom is currently at a stage 6c in her progression.

Although there are many hard days where I think "if I could just check her in today I would" when faced with the imminent reality I did not feel the relief I thought I would, instead I felt despair and a lot of guilt.  

My head knows its the right thing in some ways, especially with her wandering and continual exit seeking her safety has made me make this decision. However, I still struggle because we still have many lucid moments too, it makes it very confusing and easy to feel guilty about placing her too early or not giving her enough patience or keeping it going longer like it is.  That said I know my job is suffering.  My husband would never complain but I know this isn't the life he envisioned for us and even our kids are urging me to place her into care for my own health. 

She is easy and sweet in so many ways, until she isn't or tries to exit and tells us she is our "prisoner" and "darn* it I want to go home" and that goes on for hours some nights.  That is probably the worst thing we are dealing with right now, having to be vigilant on all doors means we have very little room for privacy or time to ourselves or one another. It makes for very long afternoons and evenings most days and we feel like the true prisoners, 24/7.

I am not sure how I will get over this feeling of selfishness, of inadequacy, of not doing enough long enough.  I have been caring for her, and helping her to care for my Father before her, for a very long time so I shouldn't feel this way but I am struggling with finding peace with this decision. I am telling myself I will take the bed at the facility when its available but I must admit I am not sure I will be strong enough.  I wonder if she felt this way when she placed my Grandpa in a nursing home.  I know she did not feel it when she placed my Dad when his dementia had progressed, she wanted to place him long before she did but it was me asking her to wait, to give him more time. She was done and wanted her freedom back.  How ironic now that I am faced with the same situation.  When she was diagnosed she made it clear she never wanted to go to a NH, I always promised her I would keep her out as long as I could.  I always thought I would wait until she was fully incontinent or when she no longer knew me or anyone else.  She isn't there yet so that's a lot of why I feel like I am failing her now.   

I suspect it may benefit her somewhat to place her now while she can still interact and communicate and participate in simple activities and even form bonds with some of the caretakers because by the time we did place my Dad it was too late for him to do so and he became violent in the new environment. Her neurologist even told me to get her on a list at a facility because the progression is about to get much worse which tells me her time to acclimate might be best now.  But still, I worry I am placing her now when we as her family should still be enjoying the last year or two we may have her still as "her" before that is totally gone.  I feel such a sense of abandoning her its horrible.  

Anyone postpone placement when a bed became available?

Anyone else feel this overwhelming feeling of selfishness, confusion and guilt about the placement decision?  

dayn2nite2

If you don’t take the bed when it’s offered, you’ll regret it.

Quilting brings calm

Being in the land of dementia makes me seriously doubt the saying ‘everything happens for a reason’. But I think that bed being available early is the light in the darkness,  the lighthouse in the storm, etc. Take the bed.  You can be as involved as you want afterwards.

BassetHoundAnn

Glitterqueenscare, you've expressed very eloquently the intense feelings of guilt and doubt that we all suffer through in making decisions for our parents' care. From everything you've said it sounds like the time is right to move your mom into a facility that can provide care for her increasing dementia. The exit-seeking, wandering, plus the fact that she's at stage 6c...gosh, her dementia may progress very quickly into something that's beyond your care. And as you said your job and your family is suffering. This is not the life your husband wanted. Take your other loved ones' needs into consideration in this decision, as well as your own. And don't feel guilty about that. 

I got my mom on a waiting list for a memory-care facility last fall. To my surprise they had an opening within a month after telling me six months to a year. They gave me only 48 hours to make a decision. I couldn't move her there. At the time they weren't allowing family visits because of covid. Yeah I regret it shortly after that. Because she got worse. I have her in a quasi-AL residence where I can visit her every day and there is staff to keep an eye on her. But she'll need to be moved to a MC residence in the future, and none of the facilities where I have her on waiting lists have had openings. I've called the MC that offered her a spot last fall, and no, she's down on a long waiting list again. According to a recent evaluation she's at Stage 5 with elements of 6, but the social workers still recommended MC for her. 

Good luck! It's such a hard, difficult decision. 

King Boo

Take the bed.

Placement from a crisis like a hospitalization or extreme decline seldom yields the best outcome.  You take what you can get - which generally IS NOT your facility of choice.

At Stage 6C, her time in Memory Care may be short before skilled nursing is required.

Guilt and overthinking goes away once you realize that you have no control over this disease process and you let care needs drive the decision making.

When emotions rule, decision making suffers.

abc123

I know this is hard for you. Please think of your husband and family. It’s time to take the bed. Your Mom is probably much more advanced than you realize. If she were to escape from the house and get lost/hurt/die, you would never forgive yourself. Take the bed.

ladyzetta

Please believe me there is probably not a one of us who did not feel the guilt you are feeling now. I realized after I placed my DH that he really needed more care then I was able to give him. He adjusted not at first it did take a few months his memory was still there a bit for him to feel comfortable with the caregivers. 

I agree with abc your Mother is probably more advanced then you realize. I think at times we as the caregivers grow with the need and really don't see how advanced that need has become. 

I agree with the others I would take the bed. Then you can become her daughter not her caregiver. Then you can giver her lot's of love and oversee the care she is getting. I don't believe the guilt ever goes away. It will mellow with time. Hugs Zetta     

Mlewis501

I had wanted and thought I could keep my mom home a lot longer and maybe never have to use a mc unit.  However, as she got worse, I knew I was no longer able to give her the constant care and supervision that she needed.  I really don't think it matters what stage of this cruel disease our loved ones are in, guilt is going to accompany every decision.  I wish I knew how to deal with that guilt.  I wish I had a magical answer for you and for everyone dealing with this.... I don't.  All I can say is that we do the best we can.  We make the best decisions at the time as we can.  We pray that we make the right choices, put our loved ones in the right places, and do what is best for them, for the rest of our family, and for ourselves.  Prayers for you and the road you are traveling.  I put my mom in mc about a year ago.  I struggle with this everyday, but I knew I  had to do this.  Mom has been on hospice now for about 6 months.  She is steadily declining but I am trying to just take things one day at a time.... and just do the best that I can.

MimiMinder

I would encourage you to do a visualization exercise. Imagine that your mother is well cared for by staff 24/7 and her food, laundry, medications and other needs are handled. You are no longer worried about her exit seeking or being angry at you for holding her as a prisoner. Sit with that for a minute. 

Then think about what you would do. Family game night? Dinner out with your spouse? Special activity with your kids? Long range trip planning? What have you put off? What needs of yours (or your husband's or your kids') have been put on the back burner for so long you forgot about them? What creative outlets or personal care could you pursue? How would it feel to be a daughter and not a full-time caregiver?

When my mother moved back into care after being with us for 6+ months, I was relieved that an entire team was handling her needs. I do not know how my husband and I managed for the short time that we did. But I do not feel guilty. Trained professionals are doing their jobs and I am able to reclaim my life. I have summer plans to see relatives and winter plans to chaperone a service learning project in Uganda. Neither of those would be happening if my mother still lived with me. I hope you can let go of the guilt and take a step back to see the big picture.

Good luck!

The4thOne

Dear Glitter

I logged on tonight seeking to post and hopefully pour some of my guilt out for the very same reason.  My brother and I share caregiving, but we are in separate states, so he provides the bulk of it, and catches hell.  I bring Ma to my house every couple of months for a month or so to give him a much needed relief.  And he was a NH CNA for years! It has been hell for him, and me when she is here.  Like you, her doctors told us a year ago to start preparing, but no, there are six of us, and we have big close knit family, we will make it work.  Well, I'm sure you all know how that worked out.  But God mae me and my brother enough.  We had to, and quite frankly we have bonded in a way that only God could make this a beautiful experience.

But it's time,  The bed is ready.  June 1st is the relocation date (I can't say placement).  

Our state still has NH 14 day quarantine restrictions in place.  We know this is the right thing, but she is still conversant, and aware, and can laugh and enjoy a conversation most of the time, even when she has no recall of the people. We all gathered for Mother's Day, and out of nowhere, she announced she wanted to dance with her children.  We found some 70's soul, Temptations, Otis Redding, Joe Tex, Smoky Robinson, King Floyd, Sly & The Family Stone, a lot of her favorite Saturday morning cleaning music and we all danced, making the living room and dining room a dance hall from the early 70's with lots of 'memba this dance and that' moments.  My mother who was never ashamed to dance when we were growing up, shimmied and shook and laughed.  How do you go from that to taking her to a NH?   But even that night, her sun-downing came on.  The  dementia rages and wanderings has become every night, and now even days; we never know what is going to set her off, so the constant tension of living defensively, is exhausting on top of exhausting.  Eggshells make a horrible carpet.  But when she is Ma, she is Ma'  I thought I was ready - prayed, read, got counseling, talked to friends. I knew it would be hard. 

Because June 1st is coming.  

I am feeling everything you are and we've done everything humanly possible and exhausted every possible path.  It's the last thing we want to do; but we stand at the last thing.  I am trying to remind myself, it is the right thing, for her safety and and it is a loving thing.  We have to stop fooling ourselves into believing that love can do what God is no longer telling us to do.  We have to turn them  into the hands of those gifted with patience and skills to do what we are no longer called to do.  We are not failing them.  We are loving them so much it hurts.  Guilt is not love, it is a selfish thing that confuses us in our arrogance that we hold the power to be more than God asked.  That is trying to be God.  Don't give Guilt the power to rule your life.  I don't know if this helps as I say saying this because I am seriously in need of prayer in the same struggle.

Becasue June 1st is coming.

ButterflyWings

To The4thOne: such a beautiful testimony. Thank you for sharing this, and I pray the June 1st relocation goes smoothlyl.

Glitter, I was going to say, I agree with what most here are saying. Take the bed. If it really, really didn't work after a few months to settle in, you could always bring your LO home. I just this month had some experiences with my DH that showed me how really possible (likely?) it is that I will have to reconsider my firm belief that I can, and will, be able to care for him (and do it well) at home for the duration. MC was not on my radar and would not be supported by other family members. As to how we would pay for it? I have not idea. But mainly, he is borderline very hard to handle sometimes lately, though not violent or anything like that. And this is a progressive disease so it will only get harder. I just don't know if I can find or afford enough in-home help to take us through the final stages. And at 6b-c, he is already hard to keep out of trouble and my exhaustion is 2nd only to my anxiety at trying to juggle full time work from home and a mobile, exit-seeking, UTI prone, hygiene-resistant, oppositional DH. 

I can truly imagine your internal struggle because if I got him on a list now while my mind is not really made up, I'd be torn if the move-in date was suddenly expedited. But I hope I'd take the bed, and know that if it really wasn't the right thing, I could always bring him home. Better that than passing it up and -- well, we all know how quickly dementia can change things. Good luck to you!

glitterqueenscare

I wanted to post a heartfelt thank you for everyone who took a moment to reply, all of you have given me so much to think about and helped me with this internal struggle. Since I posted this I have come back several times to quietly read your words, think about what you were saying and suggesting and have been comforted. Many of you made me think of things from a different point of view that I had not previously considered.  I know I am on the right path, you guys have all helped me realize that, and I do appreciate it so very much!  

The support on this discussion board is invaluable, none of us wanted to end up here but that we are here facing the reality of this disease is an unavoidable truth.  Thank you for helping me face the truth and be stronger and more prepared to face the time ahead.