Guilty, Not Guilty
I sit here this morning, thinking about guilt.
My DW will maybe hop into a car with her sister tomorrow and drive up north to visit with her giant family over the 4th of July. DWs anxiety has really ramped up the last few months and travel gets her super anxious — she can't figure out dates, driving around curves scares her, she's worried she won't be able to speak — all the struggles a person with dementia has. So, she's been back and forth on going or not. And she keeps asking me to come so she won't be so anxious. I know my presence there won't change her anxiety in the slightest and her family does not like me..and the feeling is mutual. We've also added a stronger dose of Gabapentin and her anxiety is much reduced for now. The struggle to hold onto my need to get a respite like this now and again has been such a challenge. I've felt guilty about it, but have managed to hold onto the reality of my own needs to have time in my own home alone, where I can do whatever in the heck I want. I dream of working all day in the garden without my DW coming out and wanting me to come back in to sit with her to watch all the episodes for Friends again.
Last night, I realized I'm ready to pop a champagne cork the minute they pull out of the driveway in celebration of my respite. Perhaps I should, but I feel absolutely no guilt about having that feeling of wanting to celebrate. Boy, do I need this break.
Huge progress for me on both fronts. Still…please pray, cross your fingers, send me vibes or whatever that I get to watch their taillights head out of the driveway tomorrow morning!
xoxo
Comments
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I understand about "popping the cork" to celebrate the beginning of your respite time! Totally get it! Sending you positive vibes and prayers that all goes well for your DW and you tomorrow.
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I’m praying so hard with my fingers crossed that you get to see those taillights. You are not asking for much and you are so entitled to a reprieve. Be kind to yourself.💜
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I am so jealous of you right now. Good for you. You deserve a break and to enjoy your life.
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Sending prayers for your DW to have a willingness to travel, for safe travel, for rest for you. Good vibes for you both so that you both can enjoy your time. And big hugs.
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Getting breaks should be a requirement for caregiving.
You might discuss having the PWD sit in the back seat. Alz+, one of our emeritus members, often posted about feeling flustered and disoriented while riding in the front seat, she thought the other cars were coming straight towards her. Probably this is because PWDs can no longer judge distances and motion.
Enjoy your respite! You are depleted, you need to build your "self" back up.
Iris
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Enjoy!!!
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I hope you get your respite. You need it.
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You may want to think ahead about how to avoid a meltdown Cindy. I know you're going to be bitterly disappointed if she won't get in the car. Not to be Debbie Downer, but I've been burned so many times by expecting too much...any chance you can ally with this sister?
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We are all rooting for you! Please let us know if you got to pop that cork!! (I'll be green with envy but happy for you!)
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Thanks, M1. I hear you. It's good to keep expectations reasonable.
I have the sister and one of her nieces as allies in this, so that's good. I have been able over this past year to build those allies. It's one of the benefits of my DW having 5 siblings and 14 niece and nephews. If one doesn't work out, I've moved on until I found these two.
Still…fingers crossed!
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You deserve the break, your wife deserves to see her big family and her family needs to see her before she declines further. So there is nothing for you to feel guilty about.
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Cheers!
FWIW, I am a liquid Melatonin fan. It took the edge off for DH many times for temporary situations where I needed him to feel comfortable and just cooperate. It causes no interference with his regular med routine, and slipped into his juice or water made him relax in just 2-3 minutes. See if your Dr. can recommend a dosage to try, as the 3mgs on the bottle did nothing. 10 mg made him chill, still alert after maybe a 10 minute cat-nap, but if needed the sister might be glad to have it in the back pocket if needed.
Your DW may be calmer but not sedated with a lower amount, and having that as a backup for travel days or other high anxiety situations might help. Just don't give too much unless you plan to carry her to the car and put her in it (which it sounds like you are ready to do!!!) I hear you!!! Enjoy!!!
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I am sitting here hoping you pull this off today.
But I think the bigger piece is that you should try to put a plan of regular respite, the promise of which can sustain you the hard days, in place. It might be a day program a couple times a week if you need the "peace in my own home" or a companion/aide if it's more reliably accepted while you go out.
HB1 -
Oh my, that feeling of guilt. I'm starting my 8th year of this long journey. Guilt has become a part of my life. It will happen over and over. CindyBum - enjoy your respite while you can - there will be many more opportunities to feel guilty. Take times of peace, relaxaation and calm when they are offered.
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Good fortune for me today. I watched the taillights head out! Hurrah!
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I'm so happy for you!
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YAY!!!🥳 Now, time for you.💜
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Cindybum- enjoy your much deserved reprieve. So happy for you.
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So thrilled for you that you're getting to do this. And remember, I'm sure your DW appreciates the family time as much as she is able. Win-win!
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OMG, everyone. I have been getting pictures of my DW having the time of her life with her family — sitting in a lawn chair with them in a creek because it's hotter than blazes, dancing at an outdoor music festival, laughing with her favorite brother. She's having the best time and doing things she never wants to do when we're at home together. She is always so happy to be in the middle of that big family swirl. I absolutely love that for her. Had a facetime with her last night and she could not wait to get off of the phone to go back to having fun with them. There might have been a time when that would have hurt my feelings a bit, but it absolutely cracked me up instead. Go get that fun, Suzie!
On my end, I have had two glorious, almost magical days alone. I did spend an entire day gardening and even built a new wooden flower bed. It's been calm, beautiful weather, with me listening to sea birds and watching fishing boats head out of the harbor all day. I've enjoyed every second of it. I am alone, but wayyyyyyy less lonely than when my DW is here with me and I'm the very lonely, isolated ship captain.
They come back tomorrow evening, but right now, I'm drinking a cup of coffee, loosely thinking about what I might do today, if anything. Being able to control every aspect of my day again has been so liberating and rejuvenating. I knew it, but didn't really know how worry about my DW is on my mind constantly when she's here. Such a release of that as they drove off and it's stayed with me these last couple of days. No DW worries! Remarkable!
Alone in my own home for the first time in 4 years into this terrible journey? Truly priceless.
xoxo
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So happy for you both!
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A win-win. Enjoy the rest of your staycation
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Yea!!!!
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great news. Makes me wonder: would she be happier living with another family member? Would you? Hard question I know. I just wish there was someone there who could take some of the burden off of you.
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WooHoo! Respite is really a game changer and gives you strength for the next leg of the journey. So glad they are keeping you posted on the highlights and it sounds like they are handling any negative dementia issues OK.
That is great news! If I were you, I'd be planning the next staycation or getaway as soon as she gets back 😁A regular respite schedule will help so much. Your break sounds heavenly!
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So happy you both got a "win". And an even greater win might be (for you and her family at least) the pleasant memories of this time that you are making. IME, respite enabled me to keep on for far longer than I otherwise would have.
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This was the best comment to wake up to this morning. I’m very happy for you that everything worked out perfectly. Your description of what you have been doing sounded heavenly.
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This is wonderful news. She was having a great time and that gave you full permission to enjoy your time with no guilt. So happy for both of you.
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I just saw the taillights. It’s only for 4 or 5 hours, but the feeling of relief is indescribable💜
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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