Early respite thoughts

M1

I didn't have to hide the mail today, or monitor any medications except my own.  I went to the bank and didn't have to worry about what might be going on in my absence.  I watched the news.  I hired a yard guy, no discussion or micromanagement.  I fed the cats (one can each and I didn't have to hide the food).  I turned the ringers on the phones back on.  I have all the checkbooks and credit cards in my possession. I don't need to lock them up.

Tomorrow I will work without interruptions.  I will go get the dog tomorrow afternoon (with friends since yesterday).

But I didn't get to kiss her, see her laugh, smell her hair.  I'm sitting in this kitchen that she built and feeling her all around me.  Too quiet.

Beachfan

DH has been in placement since Nov. 12.  I can empathize with all the small things you’ve discovered in just one day of respite.  Today I mailed off the taxes at the Post Office and returned library books; it took about 15 minutes instead of an hour.  It’s quieter here, but I am at peace.  I still wake up in the night sometimes and panic for that split second when he’s not there.  It is both hard yet easy.  I am both sad yet happy.  You will be okay; one day at a time.

ButterflyWings

M1 - you got a lot done today already, and I hope a bit of R&R as well, if that is possible. You must still be in shock after the events of the last 72 or so hours. I know I would be.

Also, I am sure my first respite period will feel similar, a little bit "at loose ends" after 24/7 caregiving as we have been doing. Although it surely makes it SO much harder to have this respite time start with the trauma and stress you have had to manage through. Well done though. One day at a time is enough to deal with right now. And thank goodness these are just regular 24-hour days for a while.

I was a little worried for you, that a voluntary intake might mean a LO would be able to sign themselves out on demand. But since her internist is on board that is huge. Nervous Nellie, me. What we do know is that, thanks to you, she is now getting the additional expert attention in a safe setting that her current needs and yours call for. What a blessing that is. Keep breathing. Very glad you are getting to do some of the things dementia has interrupted, though it is bittersweet right now. I do hope you are able to enjoy this long overdue time of putting yourself and your preferences first. So hard for us to do. For however long you choose. You have more than earned it! Take it easy.

abc123

Dear M1, you truly amaze me. You accomplished so many things today. That's a good thing, as Martha Stewart would say. I'm thankful that she will get the adjustment to her medications and hopefully a more peaceful quality of life. I'm thankful that you will be able to rest and also have peace, even the sad peace you are experiencing now. There is no way around the sadness when we love someone. You have done such a fine job as her caregiver. In case no body in real life has said it, I will. Thank You! Thank you for taking such wonderful care of her and keeping her safe.

French

Waouh M1, I just read your previous post for an update. You went through such moments. 

Try to enjoy these respite moments, you need them.

Ed1937

With everything you've been through lately, I know the adjustment period is hard, as was your decision to not let this disease take both of you. I hope you find peace easily, and let the bad stuff fade away.

LadyTexan

I can relate to your thoughts and feelings. 

The first time DH went to the psych hospital, 2 years ago, it was after a violent episode in our Austin apartment. DH tried to punch a police officer. It was a blessing because the failed thrown punch was his ticket to psych hospital admission. 

Although I was tremendously disturbed by the events that took place in order for him to be admitted into the hospital, I knew it was the best place for him to be. I knew that I was safe. I was able to breathe and rest. But I was also very sad. I missed him so much. 

The 2nd time DH went to the psych hospital was after a suicide attempt. The 10 days prior to the attempt and the actual attempt were horrific. DH's behavior clearly indicated hospitalization was necessary. While he was away, I took comfort in knowing he was safe and I was safe. The house seemed very large and lonely and quiet. I missed him so much. My heart hurt. 

During my recent 5 day respite provided by hospice, I did things that I could not easily do with DH at home. I thoroughly cleaned the floor in our master bedroom which has become our "apartment". Some might call the cleaning obsessive. I vacuumed 3 times, I swiftered, I mopped. I dusted the baseboards. I disinfected the touchable areas. I cleared out the clutter. I moved furniture to another room. I couldn't believe how much I accomplished in a short amount of time without the caregiving distractions. At times overwhelming sadness would strike me. I had to remind myself to breathe. I also had to remind myself that what was happening in our home (prior to respite) was not sustainable. Although true, it was not comforting.

The emotions I felt were all over the place. Sometimes I felt relief. Sometimes I felt regret. Sometimes I felt lost and confused. My precious life partner is no longer able to provide the comfort that I so desperately wanted. This disease is so cruel, unpredictable, heart wrenching, gut punching and relentless. 

You are amazing. I am so sorry you are going through this. My prayer for you is that God comforts you and brings you peace. I pray that God comforts your partner and brings her peace. I pray that you find the solution that brings the best possible outcome.

Quilting brings calm

This editor ate my answer while I was trying  to bold  a word.  $&@“

M1- I’m glad you got some needed things done.  Please add rest and enjoyable activities to the mix when you can. 

When my first child was small, I rarely got time at home by myself. When I did, I didn’t know what to do with it.  I could run errands, I just couldn’t seem to accomplish anything at home.  I would wander from to room, getting small chores done,  I just couldn’t seem to get started on anything remotely enjoyable or that required focus.  Yet there was no time to focus when my son was home.  I don’t know if it was guilt from him being gone or what. 

I’m not suggesting that you ( and other spouses here) have the same situation. My child was fine and would be home soon.  Your spouse is not fine, never will be and is likely not coming home.   Spouses are also not the same as children, even though a spouse with dementia is sort of a mix of the two.   You need time to adjust from 24/7 caregiving to  visits and consults with the staff etc.  

toolbeltexpert

M1 your activities sound just like what we all what. It is good when it's has a sense of normal. I hope after all you have been thru that this time will be a healing time. I am also sorry for the simple things that matter not being there. Praying for a good outcome for you and your dw.

M1

I have to share one happy thing today, with tears falling at the same time:  There's a lullaby I used to sing to both my kids when they were little.  This morning, my daughter sent me a wonderful audio (no picture because the lights were out) of her singing the same lullaby to her two year old, and the baby was singing along with her.  Every time they finished it, the baby says, "more song."  So they sing it again.  Broke and healed my heart at the same time.  Life and death, loss and renewal.

jfkoc

The lenses we look through ...how often and how fast they change.

Jo C.

Thank you for sharing that; how lovely and loving.

J.

toolbeltexpert

That is an awesome legacy. Thanks for sharing.

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Ed1937

"More song". What a win! I'm glad you finally had something good in your life.

ButterflyWings

So precious. And what Victoria said.

Caring4two

M1 wrote: 

            But I didn't get to kiss her, see her laugh, smell her hair.  I'm sitting in this kitchen that she built and feeling her all around me.  Too quiet.

Yes, unfortunately this is your current reality. I took care of my husband at home. The morning he died, I couldn’t go home for awhile. I got in the car and just drove around in the country for several hours with the radio on. I couldn’t even cry. I was “emotionless” for a time. I eventually went home that evening, saw the dining room turned into bedroom (complete with hospital bed, commode, etc) and just lost it. I called a friend to come remove all the equipment. I just couldn’t look at it anymore. Thank God for good friends!

It’s been five years now since he died. I still hate walking into an empty house but between the radio and tv, I have “background noise” to keep me company.  My first two years were tough. I joined a grief support group for a time. Then I moved on emotionally. I was SO physically worn out from his care for 4 years, I got sick myself (heart failure and pneumonia). Spent most of the second year healing myself. (Caregivers, take care of yourself too! I didn’t and did a lot of damage to my health, and I should know better!)

Slowly, over time, the raw emotion has faded to more tender memories. I’m still a work in progress. We were married for 40 years. You just don’t get over that overnight! My goal in the beginning was to just get through the first hour, then the second hour. Eventually, just get through the day. You get the idea. I took this life transition in VERY small steps. If I felt like socializing, I did, if not, I didn’t. I RESTED. My body and spirit needed that.

What I would give to hold his hand again but that’s not to be so I conjure up memories and look at photos of the good times. That seems to help make an emotional connection when there’s no physical connection. My heart is with you at this time. You are definitely not alone in your feelings.

M1

Thank you so much caring, and all others.  I am vacillating between grief to the point of sickness and....I don't know what the other feeling is yet.  Thank goodness the dog is here with me, or I think I would just melt away.

But those grandbabies will help.  And I talked to neighbors today.   I had mulch delivered.  I worked.   finished my taxes.  I got the lawnmower started for the spring and actually mowed the yard.  So it's not that I don't have things to do.  But the aloneness is overwhelming.  God, I miss her.

Tomorrow I go tour the memory care facility.

Caring4two

M1 wrote:

I am vacillating between grief to the point of sickness and....I don't know what the other feeling is yet. 

My counselor (yes, I went to therapy for awhile) called that “other feeling” ambiguous loss. There are books written about it.

It’s about losing someone that’s not gone yet but not here either. There’s no closure. You can’t go forward or backward. You just exist in the moment with your current feelings. It’s a weird sensation not knowing how to feel. Rest, my friend. Use this time to rest so you have an emotional reserve to deal with things down the road. 

abc123

Thinking of you M1.

Buggsroo

M1, 

I understand the grief you are feeling, with your wife in care, it is like you now can feel the grief. I am glad you have the neighbours, your family and the dog. This is vital. My heart goes out to you.