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

Janis Gail

Hi, I am new to this group. I am actively looking for help now. For the past 6 months, I have been struggling to care for my partner who is in moderate stage AD. Prior to that I was caring for her, but I was not so stressed about it.

We are on a vacation now out of state after staying home for about one year, since the doctor said routine and familiarity are needed to provide a stable environment for her. So far, so good. I don't want to give up seeing my family who live out of state.

MK can have breaks with reality where she doesn't recognize me and is so afraid. She feels unsafe. I have determined that when I am stressed out, she gets stressed out, and that is when the worst breaks with reality happen.

This is such a lonely voyage — I am struggling with feelings of abandonment, not from my partner who has AD, that is a different kind of grief, but from the rest of the world going about their normal lives, especially my closest friends and family. Is there any way that you have found to connect with people on this journey so that you don't feel so isolated?

Janis Gail

M1

Hi Janis and welcome to the forum. This virtual group has been a lifeline for me in this journey and perhaps it can serve the same purpose for you. It is indeed a lonely journey, very few people in your “regular “ world will get it, but this group does. I have tried a couple of local support groups, but this one is better, in my opinion.

If your partner is starting to have breaks with reality, she may benefit from medication to tamp down the breaks and the associated fear and agitation. Worth discussing with her doctor. Certainly travel to any unfamiliar place can contribute. In the future, you may need to find someone to stay with her so that you can visit your family. It is all a matter of difficult trade offs.

You have come to a good place for advice and support. Read a lot of threads and you will learn a lot. Under Quick Links and Groups to the right, there is one for new members with a lot of useful information.

trottingalong

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.

harshedbuzz

Hi and welcome.

I am sorry for your reason to be here but pleased you found this place.

Your feelings are very common. Dementia is somewhat unique in that even though only one partner has the diagnosis, the other very much "Lives with dementia".

For someone who is still oriented to the mainstream world, this can be hard. It can be painful hearing about the freedom, trips and new restaurant finds friends are enjoying, when that had been your goal for your so-called golden years. It can be frustrating not to see as much of family as you want whether that's an aging parent who won't be with you much longer or grandchildren who are growing up fast without a chance for you to make memories with them. Not everything can be deferred while you provide care for your LO.

Going forward, meds should help regardless. It is necessary, per the airline safety briefing, to put your own oxygen mask on before assisting others. For you to be the best caregiver you can, you need to have breaks built into your routine whether it's a weekly activity you attend or a trip to see family while your LO is in the care of someone else— family, hired aides or MC respite stays are all options.

HB

LindaLouise

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.

Buggytoo

Yes, it is hard to watch others live their lives unencumbered by the demands of having a LO with dementia. I find I have lost my ability to relate to them and have difficulty being glad for their joy. How selfish of me! Then I have to forgive myself for these feelings because they are the authentic experiences of losing the life of my DH before my very eyes and losing my own life in the process.

Novice AD Partner-Ca

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.

Crkddy

Buggytoo has expressed my feelings exactly. I don't have any joy and I am jealous of those who do. That is not right but I cannot help myself.

Bebobra

Hello Janis Gail 🌺It can be very hard and lonely. I’m sorry you’re facing this and want you to know you have come to a great place here. This is the only place I have. I can come here and read and cry, knowing I am not alone. I haven’t called the number yet but do believe I will soon as this is driving me to a place I haven’t been to before emotionally. I cannot imagine what you’re dealing with on top of the symptoms your partner is going through with not recognizing you and such.

I know for myself as I care for my MIL I’ve become angry. Angry that I am here and not where I want to be with my grandchildren. Angry that when I want to help her she insists on doing it herself even if it could cost her a bone breaking fall like it did almost this morning, as the three of us were there to help but she insisted. I just don’t get it no more.

Very difficult when family that was supposed to be there for her have now bailed. Kept moving their date of coming to relieve us so we can move out of State. To think we moved to another State with 99.8% of our possessions in March and now we have been here with her for over two months and crickets from the other family members. Truly alone. I find it very difficult.

I hope you can get some answers with meds to help and some relief for you too as I know how very overwhelming it can be without the added layer of traveling🌺

Be gentle with yourself and know you are doing the best you can with what you know and as you become more armed with tools and education about what you’re dealing with your life can be better. The oxygen mask analogy is accurate. I know I am taking a leaf out of that book for myself.

Seeker Karen

https://alzconnected.org/discussion/comment/214751#Comment_214751

Thank you so much! I find that my DH and I are in much the same situation except that DH and I travel to accommodate my part time employment. DH is exhausted a lot of the time and prefers sleeping to exploring when I get back from working. I have tried to stay an extra few days so we can enjoy the area, with mixed results. DH is still able to drive safely but can get confused about how to get back so he is hesitant to leave without me and therefore won’t explore while I’m working. That is actually less stressful for me but really limits his ability to enjoy the trip. I also find that I am caretaking when I get back from working, getting meals, medications, etc. and he wants to sleep rather than go to a restaurant or do an activity in the later afternoon and evening. I need to work for the time being and We are adjusting and he is trying hard to be supportive of me and I love him so much for his efforts.

Iris L.

Welcome Karen. If your DH is struggling, then he should not be driving or exploring in a strange area. It's too dangerous.

Iris

RetiredTeacher

https://alzconnected.org/discussion/69724/traveling-with-ad-asking-for-help-lonely-journey-how-to-cope

Hi Janis,

My heart goes out to you. My husband has been diagnosed with VD. He's had 3 strokes we know of and I'm seeing personality changes. The last year has been the toughest and I have had to give up so much of my independence, my life and dreams. We sold our RV because he couldn't drive anymore and I thought those days and dreams were over. We both missed traveling so we bought an older class C and are planning an RV trip to Oregon. Is it the same?? No, but we are still able to go at thos point. He is still ambulatory abd although impaired, this is probably the best he's going to be. We need to maximize any time we have left. I'm not ready to throw in the towel. It's different for sure but thankful we may be able to make some more memories. I hope you find the strength and support you need to keep going as ling ad possible.