Readjusting to the contrast between others' lives, and mine at home

storycrafter

Thank you for your replies on my last post about traveling and leaving dh home. For me it was a first step at reclaiming some of my life. It worked out okay. I called him each day and he got a couple other calls from people. He was ready for me to come home, though, and it gave me a benchmark about leaving him alone when I travel.

My challenge now is reintegrating back into "life as usual." After spending time with my youngest son and his growing young family, helping out and thorougly enjoying my role as grandma to their sweet babies, feeling like I was making a real contribution while totally focused on them, undistracted by having to directly tend to dh needs... I'm finding it hard to easily slip back into the grind at home.

The reality of our lives as a couple (my dh has had FTD, slow progression, for many years) are in my face after the sweet time with young loved ones actively engaged in living their lives and allowing me to be a part of it for a short time. They live so far away I will never be a regular part of their lives other than from afar. There is a huge contrast between my life at home and my visit to see loved ones. My son treated me with great respect, care, and consideration despite many responsibilities and a newborn in the house. Although tiring and stressful in some ways for me, it was a phenomenal time being with them.

I'm so filled with gratitude I could make the trip and dh did alright home alone. But I'm really struggling with the transition back home and depression and despair nip at my heels daily. Somehow I forced myself out to take a walk this morning and I'm going through the motions of gratitude and counting blessings even though I feel numb and am unexpectedly grieving. It's hard to make myself get up and take a shower. If I can force myself to "act as if", eventually I'll get through this hurdle of my own apathy and inertia.

It is a real disappointment that my oldest son and family who live 25 minutes away, did not engage with my husband while I was gone. I'd asked son to stop by a time or two to check in on him in person. Son did call dh and invite him to come down to their house for a meal, but dh declined. (Of course he wouldn't go, dh's inability to take action, rules. ... So. ) Now that I'm back and dh survived by absence, others seem to think my concerns were/are over-protective of dh. They bury their heads in the sand. Maybe they're right and I'm too involved? Each night I called him he was inebriated, self-medicating as he does to cope. I just had to hope for the best.

I'm feeling so alone with the situation. Well, of course, I am. No one but those here could possibly "get it." I will endure through this, put one foot in front of the other, until it feels "normal" again.)

Thank you for "listening."

White Crane

Dear Storycrafter, the last time I was able to leave my DH at home and travel overnight was in 2018. I flew from Missouri to Indiana to attend our grandson's college graduation. There was no way I could leave him on his own for several days but our daughter was able to fly home and stay with him. It was wonderful to get away for three whole days! And it was hard to come back into our home situation. It took awhile to adjust back to being his caregiver and to all the confusion. I understand your feelings and your depression now that you are back home. It is good that you are trying to focus on your blessings and your gratitudes even though you don't really feel them. Better to focus on those than on the depression and despair. I wish we lived close so I could come over and give you a hug and sit with you for awhile. Sending virtual hugs.

Brenda

SDianeL

I understand your grief about the loss of yourself & your family. When we care for others we lose ourselves. We all know how you feel. I can't leave my DH at home because of his inability to make decisions. The nurse case worker who came to our home asked him what would he do if a fire broke out in our apartment. He paused for a long time and said flatly. "I'd try to put out the fire" -- not I would call 911 or leave the apartment. She said that's common in dementia patients and that he should never be left alone. We got an emergency alert button in case something happened to me he would not know what to do or who to call. My DH can't decide what he wants to eat & the menu is so overwhelming for him, so we don't go out to dinner anymore. The last trip we took to see our kids & grandkids was hell. Won't do that again. Can't. My son & his family lives in another state so I won't be seeing them unless they come here. His only daughter lives in another state & is disabled so she can't help. My daughter offered but she works 10 hours a day 6 days a week and I can't ask her. I did get approval for respite care one afternoon a week and I use that to go to my doctor appointments and visit my sister who also has dementia. This disease is terrifying & devastating. Maybe ask for help from your doctor to cope with what you're feeling?

Quilting brings calm

Storycrafter I don’t remember the specifics of your spouse’s condition. However, I’m guessing that his successfully(?) handling your absence means that it’s too soon for him to be placed in assisted living? If you can afford it? The nightly inebriation would be an obstacle to placing him too.

I totally understand your depression upon returning home. It’s a depressing life. I couldn’t do it 24/7.

Ed1937

I'm really glad you did get to have a nice mini vacation. But it's not hard to understand that it might be hard coming back to every day life. I would be surprised if that wasn't the case. Maybe they can come to see you before long.

ButterflyWings

Storycrafter, I am so glad you were able to get away and that no catastrophes happened at home with your DH. I can well understand your sadness and withdrawal symptoms from such a wonderful visit! I am reading at least two miracles in your beautiful but bittersweet report back:

1. My son treated me with great respect, care, and consideration despite many responsibilities and a newborn in the house. OMG what a complete blessing on top of being with your littles. You won the lottery here!
2. And it is miraculous that no unmanageable mishaps occurred with your DH while alone. You dodged a bullet here, I think. No criticism or guilt from me. Glad it worked out OK. I was nervous for you all.

So much happens here unexpectedly that could easily turn tragic. Any given day. I can't even imagine leaving DH alone for the evening, much less overnight or multiple nights. But he is a fall risk, wanderer, and meddler/rummager at heart. Will find or create a tool to turn on the burner since I've removed the knobs. Tried to eat hand-cream and shaving cream just in the last 2 weeks. Casually chewed up a paper towel after lunch a few months ago and WOULD NOT let go of it though he couldn't get it disintegrated enough to swallow, thankfully and eventually spit it out. Line of sight is a necessity here.

Even if you had been reported to adult services for leaving him alone (as I would have been if I even tried to leave for a couple of hours. Dealing with litigious aggressive in-laws and steps right now. As if life was not tough enough being stuck as you are feeling, with so much loss and so much heavy responsibility for another's disappearing life). These are things that make it unfortunate that people now think you are overreacting. Ignore them. It is really critical to provide the proper level of supervision and care for your DH. I think they are in denial and looking for a reason to opt out, which is unnecessary. They should just opt out. And dispense with the re-framing reality as if you are not living dementia caregiving 24/7 which gives you a front row seat to just how risky such independence is for a PWD at your DH's stage.

I am so happy you were able to have your getaway and it was so rewarding. I understand the letdown feeling now that you are back but hope you can hold on to some of that magic from the respite getaway. You established some good memories for you and your loved ones that you will be able to build on going forward. And the dementia angels were with you & your DH to keep the lid on back home, this time.

Maybe you should start planning your next visit now and book the Plan A and Plan B care team months in advance. You can leave your other son off that list since you know that is not his forte. No harm, no foul.

You did it!😊

trottingalong

I understand your dilemma. My DH is fine as long as his schedule doesn’t change. He’s funny and interacts with neighbors. Way too early to have anyone come in to help. Dates and times confuse him and me going somewhere outside of my normal routine stresses him. I cannot leave to go see my daughter and grandchildren who live 7 hours away. My other daughter lives out of state. He’s lost our dog twice in the last three weeks. I went out of town for 5 hours with a friend. He self medicated with alcohol and ended up losing something and getting extremely upset. I’m more stressed getting out. He has never been a drinker. He’s 79. Now I catch him purchasing small bottles of vodka. He says it makes him feel better and more energetic.

M1

I totally get it, too. Hard not to feel anger at your older son, but that only digs you into a deeper hole.

I don't know how we can fight the isolation but I know we must. The suggestion about planning ahead for your next time off is a good one, but finding the energy to make yourself do it is another matter. Im sorry, storycrafter.

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harshedbuzz

I agree with Victoria that you were lucky. This time.

My mom really struggled with readjustment after even a 4-hour respite break. It was my clue that her days as a hands-on caregiver were at an end. FTD can be especially challenging on a caregiver, perhaps it's time for you to consider another arrangement for his care?

HB