I need help

Wholehearted1

I dearly want to travel and visit my new grandbaby in California. I had given up traveling with my husband, who is probably stage six with Alzheimer’s, because it was so very disruptive to him. But he’s in a different stage now. He no longer shadows me everywhere I go, and he no longer has the intense anxiety/delusions about needing to go home (even though he is home), pack his bag, go somewhere else, do some thing else. He is so much more peaceful, and I can leave him with others, and he doesn’t even know I’m gone. He needs a lot of care overnight with incontinence, wandering etc., and I am very uncomfortable leaving him. Looking for others to share their experience – do you think that I could take him with me without rocking his world? It is possible to make it a one day flight, leaving early morning and getting back very late at night. It’s worth it to me. Thanks for any ideas and help!

sandwichone123

I do not think taking him with you is a good idea at all. Respite care can work for some people, and in-home care around the clock sounds like it would be a great fit while you're gone, but I can't see any world where taking him with you would be helpful at all.

upstateAnn

I agree. Sadly.

ImMaggieMae

It doesn’t sound like taking him with you would work at this stage. If you don’t have a trusted caregiver to provide constant care, might it be possible to invite your children with the grand baby to visit you sometime soon?

Beachfan

Dear Wholehearted,

I was in your shoes not so long ago. Around stage 6, my DH was “easy” to care for, because that was all I did 24/7. I had a routine, I had certain approaches to every situation( preparing his food- toddler like, eventually feeding him, dressing, bathing, toileting, even how I turned him to sit on a chair or get into a car or bed). It was just easier for me to care for him than to explain to someone else what the procedure(s) were. I missed out on a lot of grandkid activities, and once COVID died down, I really felt the frustration of staying home and missing out. Traveling with him by this point was out of the question; a trip to WalMart was hardly worth the effort. My kids ganged up on me and a planned 30 day respite at a MCF morphed into permanent placement for 17 months until he passed in April. He no longer knew any of us, he didn’t know or care where he was or who was with him. The kids were united in their determination to keep me from going under as a result of caregiving.

Long story short, were I you, I would do everything in my power to get to CA, but I would not take DH. In home care or temporary respite in a facility would allow you some freedom and happiness. Or, as MaggieMae said, maybe the CA family could make the trip to you. I was fortunate to have placement as an outlet, although I always hoped and planned to keep DH at home until the end. Everyone’s journey is different; in hindsight, I am thankful I had the ability to re-connect with family and friends even as I was losing him day by day. I hope you are able to work something out; having cared for DH at home for 11 1/2 years, I am still making up for “lost” grandkid time. Best of luck.

Cathy123

Go.

Respite will do your mind and body good. :)

harshedbuzz

Congratulations of on the new baby!!

In your shoes, I would tour a couple of MCFs and pick one for a respite stay. These places have experienced and well-trained staff who are fully capable of doing all you do at home and should be less than the cost of 24/7 care without the worry of managing a no-show from across the country.

Travel often results in a significant drop in the stage of dementia in which a PWD has as a current baseline. Given your description of stage 6 level of needs, that could result in you getting trapped in CA with a man who morphs into stage 7 with a loss of ambulation and a need for medical transport home.

The other piece to this, is that it would be less than ideal to subject the new parents to a houseguest/visitor who needs the level of care your DH does. An alternative would be to pay for them to come to you at some point.

HB

Ed1937

I think we all agree that a trip like this could be a real setback for him, and he might decline without ever coming back to baseline.

While I think the trip would be good for you, it would be best if you could have someone stay with him while you're gone, or place him for a while for respite. Enjoy the trip by yourself.

Welcome to the forum. It's a good one, and you'll get a lot of help and understanding here.

Wholehearted1

After a good cry, I am letting go of the idea of taking my dh with me. It’s time to enlist help beyond my kind friends. I’m getting up the courage to call helping hands. You guys are great- your feedback was just what I needed. Thanks!

SDianeL

Wholehearted1: You are making the right decision in my opinion. Many Memory Care facilities have respite care. At your DH's stage, I would do that. I understand how you feel. My DH is Stage 5 going into Late Stage 5 and we no longer do anything. We don't go out to eat or travel anymore. My son lives in OK and I live in FL and I can't go visit them. My grandson is buying his first home and called for me to come for a toast and my DH said he didn't want to go. When my husband gets to the stage where he is peaceful but needs extra care, I will find a good MCI and go visit my son, grandchildren and great grandchildren. I can't leave him now because he would be unhappy there and I would feel too guilty.

Gig Harbor

You might also give respite care a try. They usually require a weeks stay and that could give you more time to spend with your family. With respite care you do not have to worry about an in home caregiver calling out sick at the last moment. Enjoy your trip.