Traveling with AD, asking for help, lonely journey, how to cope?

it is a lonely journey. I have really been missing my family these past few weeks. My DH will not travel and I cannot leave him alone. I wish I had something positive or helpful to say. Like most on this journey have found, it can be lonely and isolating.

I totally understand your feelings of abandonment - the lives we once had and thought would continue are going away or gone, and we sit on the sidelines watching others go about their lives. This was not what any of us would have imagined dealing with in our retirement years. I've found the grief, loss and sadness we feel, while our LOs are still alive, is not something the rest of the world "gets". I have recently had to place my DH due to extreme agitation and aggression. I lost my partner, my travel buddy, the person I eat, sleep and even argue with, to this awful disease. I am so sad, broken hearted and lonely - but the outpouring of support received on the death of one's spouse is, of course, not there. Because they have not passed away… It is a strange limbo where we live, and those feelings are so unpredictable. Triggers for me are listening to my couple friends chatting together, heading out for a walk, playing with their grandkids in the yard. Just normal things that are not part of my life anymore. The other day I found myself, from habit, driving in the carpool lane, before I realized I was actually alone in my car. I am so grateful for this forum as it is the one place I know I can always find comfort, advice and others who truly understand.

Travel.

My YOD (AD) partner was diagnosed 18 months ago, already moderate at 56 - he was a good masker and I was supporting him enormously, and buckling under the load!. It seems like half a lifetime ago. I've done a bit of travel with him since, from a sense of "Let's enjoy life while we still can…". But the experiences were tiring, draining, stressful and not very enjoyable for me, although he enjoyed them I believe, and he remembers and talks about them. Like you, I need to work incredibly hard to try and remain calm and cheery no matter what happens. When things go wrong, he cannot help, cannot understand, detects my anxiety, and it goes downhill. I find I had to plan everything much more carefully than previously, because my ability to think on my feet, while looking after him, is greatly reduced. It is so hard trying to communicate, be the "translator", often with strangers who have no clue what they are dealing with! I once got rebuked by a shop assistant for speaking for my husband. He has expressive aphasia. It's been a steep learning curve.

I miss the spontaneity and feeling of adventure that less "locked in" travel provided, but that is just too stressful now.

I've found that the best travel is to familiar places, even including staying in familiar hotels. His memory is still pretty good and he enjoys revisiting places he remembers, and he still has mental maps so he does not get lost. Having our own room/accomodation is essential - I would not stay with family/friends in their homes. A room with a good private ensuite bathroom is essential, and our own kitchen to prepare meals so that we don't have to go to restaurants all the time - even better. This can be expensive, but it's the only way it can happen successfully. It is necessary to have a safe, quiet, private place to retreat to and just chill and restore equanimity, nap, soothe etc. And we tend to have trips now where we travel to a place and stay in that place for several days, not moving on every day to see new things, have new experiences all the time. That is just too difficult and overwhelming now.

I don't know if any of that is helpful. I have not experienced having my partner having a break with reality. So far, he's always known who I am and generally where we are and what is happening, although he has a weird sense of time and thinks everything in the future is happening "tomorrow". I did find once that in an unfamiliar hotel room/suite he got confused in the middle of the night about where the bathroom/restroom was.

I understand the loneliness. I admit I've withdrawn a lot from those people who did want to "help" and "support" me because they simply could not understand, kept thinking the challenges I and my partner were facing were somehow similar to their own lapses of memory or forgetting things, they have no clue. As he's progressed I think they have realized what they don't know, and they are pretty uncomfortable around us now, don't invite us to anything. And yet - amazingly - some of them thought I needed to be told what to do! ("You should do such-and-such…"; "You NEED to do this or that") - giving advice based on ignorance which was so disrespectful and so upsetting. I feel very isolated now. It is a very peculiar experience, and sometimes I feel as though I'm in an alternate reality. Sometimes I wonder if I'm going mad, there is a sense that this is all wrong and cannot be true.

I find forums and online groups very helpful. I don't know anyone in real life who has experienced this.