Primary Caregivers

I understand your situation, and I'm so sorry that its so hard for you to get away. My parents' home is about 25 minutes away. I share caregiving with a sibling. When I leave town, I prepare many meals in advance and freeze and deliver them. I try to be proactive with any errands that might need to be done. It was hard for me to plan for travel when we were dealing with multiple health issues, over a few years and no definitive or even vague idea of life span. I am very grateful that my dad did not pass when we were traveling, but we knew that was a risk. We made sure that we would be able to cancel or reschedule all of our travel plans. Now, its only my mom, and her health is fair. She is able to do a few things for herself so that makes it easier for me to leave. I still make and freeze lots of meals. I'm constantly searching for interesting soup recipes!

I know there are options for help with caregiving, but what is available and who pays for it varies a lot by individual. You could reach out to a church or any other community organizations that would be able to help at times.

Some assisted living facilities offer short term respite care.

My heart goes out to you. This is a huge challenge. Fortunately I have two wonderful siblings and we worked together as a team. We made sure one of us was always available to our parents and we hired in help.

We were able to find a nursing/rehab facility that has respite care available and my mother was there for a week and we were able to go away knowing she was in good hands. It wasn't cheap but it was a absolutely worth it.

I do know someone who was able to arrange for temporary in-home care (visiting nurses/caregivers) while they were away. I'm not sure though if that was people who came every day or someone who actually stayed at the house. I would think that depending on where you live there might be something like that available.

Oh, this is such a difficult situation. I am sending you lots of caring thoughts and offer you an ear for venting if you ever need it.

For myself, I didn't go back to international travel until after both Mom and Dad had died. I was able to do a few 4-5 day forays over to Yellowstone (my place of peace) while I was caring for them both when they were able to remain in their own home with my supervision (shopping, cooking, etc) as well as after I moved in to their home as a full-time caregiver. My brother was able to take time off work and fill in for me with them. They lived in their own home just a few doors down from where I shared a home with my brother, SIL and their kids.

I had a trip to Italy planned toward what turned out to be the end of Mom's life. She was in a nursing facility so physically taken care of but my brother and I had made arrangements with the funeral home and I'd talked at length with the social worker and nursing staff at the facility as well as her family physician regarding our travel plans. It turned out that Mom died before my vacation so that took care of it.

The plan, if Mom died while we were gone, was not to come back home but to have the funeral home proceed with cremation (papers signed ahead of time) and for the nursing facility to box up her belongs and hold until we returned. We were up front with Mom about our vacation plans and as she was a big traveler earlier in her life she was thrilled we were going to Italy. In fact, she told us not to come home if she died while we were gone...she said she'd just tell the funeral home to put her on ice until we got back, lol.

If you have sibling, I do suggest you are up front with your needs if they are not actively involved with Mom/Dad care. This is an exhausting time, both physically, mentally and emotionally. Do everything you can to care for yourself/yourselves during this time.

I am not the primary caregiver, but we had to move our mom to an assisted living facility a few months ago. My brother and I both live out of state and were flying there weekly for several months to get all of her needs taken care of. The trips are now about every 2-3 weeks. She is in good hands with the facility, but there is still so much that needs to be done by the two of us, so not a day goes by that we are not dealing with something regarding mom. Just the other week I got a call that mom needed an urgent surgery, so I had to fly out the next day. You just drop everything and go.

I did have two international trips planned for last fall/winter before all of this happened, and I did go. My brother encouraged me and said he would handle everything. It was much needed for me. On each of those trips, I had one day after I returned home before I flew out to moms. I was exhausted, but it worked.

I don't think there are any easy answers for this. Every situation is different and there are different family dynamics, and those are every changing as well. I do keep asking where the Eldercare for Dummies book is;)

This is a topic I have struggled with for the past 13 years. In the past when my husband and I traveled internationally we took my parents, and later just my Mom (now 89 years old), to one of my sibling's home (always a two day drive away). Despite requesting help no sibling has ever come to our town to help out while my husband and I travel. They have never been involved in my Mom's day-to-day care. They come into town for a day or two at a time once or twice a year. All live out of state. I know not to expect any help from them. Giving up expectations of them has really helped me cope.

Early last year Mom fell. The injuries sustained in the fall made it impossible for her to continue living in her own apartment. She moved to an assisted living facility. Like a previous poster wrote, there is something every day that requires my attention. The issues at the facility are many but overall the care is mostly adequate.

My husband and I have scheduled an international trip for this spring. We are planning another one for this autumn. As far as I know, no sibling is planning to come into town to see to Mom's needs while we are away. I have two good friends who plan to visit her and check on her while we are gone. One is a recently retired RN. However, this is not the same as a family member and I am a bit anxious about leaving. I have been a caregiver for my Mom since 2010. I need a break. The only way I can get away and not be weighed down with caregiving responsibilities is to leave the country. This will be the first trip since 2019. I can't wait.

What I have done to prepare is make an extensive list of items my Mom may need while I'm away, like Teddy Grahams, denture tablets, Fudge Stripes, etc. I plan to pay her monthly bills in advance. I may try to contact her via Skype while we are away but not sure. As usual, I will send our itinerary to my three sibs. My Mom has advance directives, POAs for healthcare, and a will.

On a side note, after so many years of caregiving I find it harder to focus. I have always been the main travel planner. But this year I am asking my husband to assist more than I have in the past. Don't want to mess up dates, times, confirmations, etc.

I wish all caregivers out there happy trip planning, a relaxing break when you get away and happy travels. My experience has been we are doing the best we can and giving nearly our all to caregiving. We need and deserve a break.

Traveler Girl

@travelergirl - Yes - focus. My husband moved to a memory care community last April and while the move was being planned I was so desperate for something to look forward to that I booked an airline ticket to Switzerland for September. Then I vacillated until two days before I left about whether or not to go. I did go, but I basically went without planning anything except my lodging. That's nothing like me! But I just didn't have the energy (or brain power) for detailed trip planning. I wish you a wonderful time.

Trevelergirl--Oh I feel for you. I can relate to so many things in your post. Mom has had 3 falls I the last few months, and one was with me. I am glad that you are going to get away. We do need to take care of ourselves. I am 100% guilty of not taking my own advice as much as I should. All the little things we do to help. A couple weeks ago I flew down for one night just to take mom shopping as she did not have any clothes that would stay on her anymore. I am not sure which one of us was more exhausted after that. I wish you the best and if I lived nearby I would help you out:)

I lost my father 2 years ago this month. He lived with me and it was just us and two cats. He was diagnosed with a terminal illness in April of 2019. And needed blood infusions eve ry other week to start and every week at the end. This took two days. One for the blood match and one for the infusion. (His blood got hard to match so they needed longer to get it in).
Plus all his other tests and such. Lucky he was able to drive until the last 8 or 9 months and was still pretty independent up to the last three months.

We had been planning a trip to Italy in 2019, but that obviously didn’t happen. We had planed a short trip (a couple days) to Niagara via a drive through Canada but that was planed for April of 2020 and lock down killed it. By the time lockdown ended dad was need weekly treatments.
I also had to change jobs to be able to take care of him seriously cutting my income (about in half). So between the income lost the costs incurred and the fact that my Father was my travel buddy I have not been out of the country in almost 5 years.

My dad was a Vet so we could get some help through them but not a lot. Between them and other government programs we could get in a person once a week to help a bit with his stuff (wash or whatever) and to get him ithis meals or whatever he needed so I could go out. But it was only for about 3 hours or so, And they either sucked at it or quit to go work elsewhere.

We were entitled to a set number of days and in theory I could have used these to cover a couple days in an assisted living location. But it was only like three or so.

As for family…. I wish you better luck than I had. I could not get any of my immediate family to help with any of the appointments or tests or anything. Or even to just stay with him for a few hours.

Then About a month after my father passed I had a medical emergency and was rushed to the hospital and stayed for several days.
The doctors say that I had so over stressed myself taking care of him that my one medical situation got out of control and came close to killing me. (Within hours) And that this is not as uncommon as we may wish. Apparently a lot of primary care givers have medical emergencies about a month or two after the person they are caring for passed away.
So make sure you take care of yourself.

I wish I had better information for you as I KNOW how hard it can be.

But it is also the most rewarding thing ever. I would gladly go back to those days. As I miss him so…

If your parents are veterans that opens a few more options.but non that I am aware of that would gover you for a vacation of more then a couple days short of putting them in a center,
If you have any questions or just want to “talk” feel free to contact me off forum.

Much sympathy to all of you caring for family members and feeling overwhelmed.
My parents are both gone now, but my Mum had dementia, the happy kind thank goodness, and didn't even know I was gone when I traveled.
She lived her last five years or so in a wonderful care home, walking distance from our house, and the staff were just great.
She seemed to be happy and I'd take her out for a drive, tea, lunch, etc every few days as she was very mobile right up until her last day.
I still felt a bit guilty leaving her while I was away, but I have two dear nurse friends who were really good and would visit her while I was gone.
Sending all of you the very best wishes for your own sanity and wishing for great care for your family members whom you are responsible for.

Thank you for the kind words mikliz, Janet, and Douglas. Care giving is hard work. The hardest work I've ever done, due to the physical, psychological, emotional and family dynamics involved in caring for parents. One of my self-care techniques are reading posts on this forum.

For years in my work as a clinical social worker working with hospice and home health caregivers I discussed the importance of good self-care. I don't think I said anything unhelpful. But when I unexpectedly became a caregiver three weeks after leaving my hospice job I soon realized how hard self-care can be. It's easy to talk about, harder to find time to do. But so important. It took me a long time before I realized I needed to take more time for myself. And to realize that sometimes I am going to feel guilty about it. Not justifiable guilt but feeling the feelings anyway.

Planning and taking international trips and not feeling overly guilty about it was/is a form of self-care for me. I've long said if I'm not planning a party or a trip I'm not happy!

mikliz, my Mom's need for care was also sudden, in 2010 and increased in 2022. I can relate to the exhaustion. Isn't it interesting how something that normally would not be a huge deal (like shopping or taking someone to appointments) can leave us so wrung out? I feel I'm often running on fumes/

Douglas, you worked so hard to care for your Father. And grief work is hard work, a real roller coaster ride. The immune system takes a hit. As you wrote, it is not at all unusual for a grieving individual to experience health issues while doing grief work. Please continue to care for yourself and I hope your situation improves so you can travel again.

Janet, we are planning our first trip post covid, post my Mom moving to assisted living to Switzerland, a place we have been many times. We contemplated going to new locales in Switzerland. But in the end we decided to return to places we know and love. Less stressful. We are planning a trip to Bavaria in the fall. We are thinking about adding the Black Forest area for a week but maybe that is more planning than we want to take on right now. No decision on that needs to be made right now. I think knowing our limitations is a form of good self-care. Congrats for knowing yours and not stressing out with "shoulds".

I do have to say my husband has been supportive. He helps as he can. Some things I just have to do myself. So here's to the spouses/partners/friends who support the primary caregivers!

And here's to those of us who have been caregivers and are caregivers now. What would our loved ones do without us? Yes, it is hard work, but for many of us it is so rewarding. The stories we hear and the ability to truly give of ourselves is so wonderful.

So hang in there caregivers. And happy guilt-free travels!

Traveler Girl

As a Brit it's not really for me to contribute to this thread, and anyway we don't open up in the same way as Americans and have quite different care systems.
But I just wanted to say that this thread represents this forum at it's best. I have shed tears several times quietly reading the contributions.
Thank you to the OP for starting the thread and those who have written at length.
I am finding it very helpful in my journey 2 years after losing my Mum to a cocktail of Parkinsons, Dementia and Cancer (+ other issues), after 8 years as a Primary care giver, the last three years of which Mum was in a care home. She had been admitted for two weeks of Respite Care when I was instructed by my Doctor to go on vacation due to being totally worn out. She was due to come home after that week without fail, but assessment during that week deemed it to be not practicable for that to happen. There was a lot of guilt complex in me over that which it has taken a very long time to deal with.
I agree with Douglas, I have had a number of health issues since losing Mum, if not as serious. I thought I was prepared for losing her and coped well in the immediate time afterwards. It was several months later, when all the paperwork (nearly) was done that it hit hard.
Anyway, that's enough from me.

I think sometimes posts like this can be a form of therapy.

Taking care of my father was much like the saying about the frog in the pot. The pot heats up slowly and the frog never knows until it is too late.
It started out very slowly, then one day he was having trouble breathing and I had to rush him in and he got his first transfusion that day. And it slowly gained as he had more and more issues.

We would encounter a new challenge and have to find a new solution. The tricks I figured out to compensate…. Such as using a remote controlled doorbell type thing so that dad could get my attention me once his voice was not strong enough for me to hear on the far side of the house.

Finding him something he could build once he could not do his wood working.

Our trips to Europe were a highlight for him. He set up our big tv to play a slid show of his favorite photos from out trips as its screen saver. So when he was not watching TV it would show the photos. This still pops up on my TV now and then.
So in many unexpected ways our trips have continued to be a benefit.

@TravelerGirl...I smiled when I got to the part where you were a Clinical Social Worker...I was a hospital social worker for my career. I realized over a 4th of July weekend that Dad was not coping with even just cuing for Mom (dementia) as I started finding her morning pills just sitting beside her plate at dinner. I had spoken with my financial guy a few months before who'd said I could retire any time I wanted to, so confirmed that was still the case and moved on it within a month. It was one of the best decisions I made.

Like Douglas I found it very rewarding although the most difficult challenge I'd ever had especially as they needed more care and I had to move in. I agree with TravelerGirl that over the course of 35+ year I encouraged caregivers nearly daily to take care of themselves but I never really "got" how hard that was to do once you were in it. I did have family support - I'd never have believed my brother would be able to come assist Dad with a shower AND hear the 2 of them laughing hilariously thru the process every time.

My sanity during a lot of that time was to thumb thru the Rick Steves tour book. Occasionally it would be as I sitting on the back deck, mostly in the dark but enough light to see the pictures. I practically memorized itineraries and tour information. I decided when they were gone I would do as many tours as I wanted without even blinking at the price. And I have, lol! More or less!

As mentioned above, the invitation is open to all, I'm just a PM away if anyone ever needs to vent.

Primary caregivers for the elderly are #1 on the list for needing a great vacation. My parents were world travelers, and their love of travel wore off on me.

Those years that my grandfather lived with them, my grandfather stay with me in Indiana while the parents traveled the world.. He was infatuated by those 300' tall drag lines that stripped topsoil in the coal fields.

And sometimes he'd go stay with one of my two aunts.

Yes, Mom (96) lives with us, requires caregivers, none of my many siblings are interested in much help, and Mom does not care for some of the options we have tried. My wife's patience is gradually running out. Luckily, Mom is mostly deaf, so she cannot hear the sometimes ascerbic comments ...

I completely sympathize with Douglas and Traveler Girl, since my situation is much the same.

In my case, I not only have unhelpful sibs, but I am in a status of non-communication with several due to previous times that they stayed.

Respite care is the next option we will be trying.

Dear Paul, TravelerGirl, Janet, Douglas, isn, mikliz, Pam, and so many others who have written in this thread - bless you all for the care and time and energy and money you have spent and are spending caring for your loved one/ones.

I don't know what more to say. Just that your relating your experiences- both past and ongoing - has really touched me.

I'd like to add that I think a lot of us primary caregivers are not spring chickens providing care. This has to have some impact on our caregiving, although I haven't given it a lot of thought.

Artificial Intelligence, I am curious to know if this thread has lived up to your expectations. Have you found it helpful?

Traveler Girl

"not spring chickens" indeed. My wife is 73, I am 70. We are well aware that our travel clock is ticking. We figure that we have about 10 more years, then we will probably age out. This is on our minds as Mom keeps on keeping on.

This is helpful.
Well I am lucky. My mom had 6 kids. The oldest my sister is retired and now my bedridden mom lives with her. I was the primary caregiver up until October 2021 when the only way to get mom in and out was to carry her down and then back up 3 flights of stairs for doctors appointments became too much. My sister went on a cruise for a week December 2022 and I did the caregiving to give her a break. My other sister is handling the remodeling and eventual sale of mom's house. One brother picks up mom to go to doctors appointments. I posted this for my girlfriend who is an only child caregiving for two octogenarian parents one with Parkinson's so she can get some ideas so she can go on my next trip which she needs. Thanks

Another social worker chiming in here.....
Caregiving - the hardest job in the world! Physically and emotionally exhausting with such a whirlwind of emotions to manage - grief, anger, guilt, hope, resentment, fear...

Both my parents were in their 90's when they died, and those last years were very ugly, especially for mom who had advanced dementia. Both my sister and I took turns with their care, and we ended up hiring private pay help to help us manage our mother's care as her needs were so great.

As the worst of it was during COVID, it actually helped as it made us less resentful (sounds awful doesn't it?) that we were tied down and we could only allow ourselves short getaways as it was too much for the other person to be gone for too long as mom, at that point, needed total care and couldn't be left alone.

What helped us is that we increased the paid caregiver services when the other person took time off, so that there was some reprieve while the other sibling took time off.

If there is no sibling or other family member to share in the responsibility, I would suggest you look into the many adult family homes that are springing up these days. In our area of the state, we are seeing many Eastern European immigrants starting up these homes. Many of these are very homey with a small resident population, and some will accept residents for respite care. Of course, you have to have the financial means to pay for the stay, and the person you are caring for has to be agreeable to go (if they have the capacity to consent that is). Long- term care insurance may also pay for this. You can also contact your local Aging and Long-term Care Dept. of your state to determine what supportive services are available.

My heart goes out to everyone who is going through this because I know how exhausting and heart-wrenching it is. I am still dealing with after effects of cleaning up my parents' estate, but I hope to retire soon and catch up on a lot of traveling, I'm also hoping I'll have time to attend our local RS Travel Group where both Pam and Jean are illustrious members! All on the retirement bucket list!

I agree, this thread is amazing!

traveler girl--I am in my mid 50's and mom is just 80. But sepsis that led to delirium is what got mom. It was a complete shock to us and so sudden. Your description of us running on fumes is spot on. There have been times over the last 6 months that I actually have to sit and look at a calendar to see what month it is, everything becomes such blur at times.

Douglas--My moms parents were world travelers, but mom was not as adventurous. She loved taking Tauck tours as she was catered to though. So she did a lot of domestic ones, but also ventured to Canada, which for her was a big deal. We took her to France once, and she enjoyed it, but was so far out of her comfort zone. Since we just cleaned out her condo two weeks ago, I brought home all her photos and we are doing a Mixbook album of her life. That way it will all be condensed and she can relive her highlights, including those trips.

Pam and Terri--I told travler girl as well, but wow, social workers like you are such a gift!

The one big change for me is that before all of this I did not look at my email or phone throughout the day. Now I have to. You are never "off the clock" really. Yesterday was my birthday and family from AK is here visiting, so we were out wine tasting, yet also I was having to send documents throughout the day. That is my new normal, but I am not complaining. It is just different than before. Like others here, I am so grateful to be able to help in any way that I can. Exhausting yes, but also so appreciative that I can.

Topping this thread. I have been down to moms twice now since I last posted.

On my trip this past week, one of our appointments was at the DMV to get mom an ID card as her license is expiring and she will never drive again. I noticed something there that I had never paid attention to before. There were a handful of of customers there that were older and they had either their daughters with them or like us, the daughter and granddaughter. I could tell because they looked alike;) It was just something I never thought about before, but all the daily things in life that you normally just do, is not doable for some anymore. To see so many others helping their mothers (it was all women, so not being sexist) was nice, but it made me wonder what people do who do not have family to help out with these sorts of things.

We are toying withe the idea of bringing mom up here for a couple of days. Has anyone in a similar situation, or one of our experts here, done this or do you have any insight? We would have to fly down and escort her on the flight here and back. I just don't know if we are off our rocker for even thinking this is possible. She seems receptive to it now, to see all the grandkids etc, but I am afraid that when the time comes she may freak out and I certainly don't want to do that to her. I would love to hear any experiences/suggestions on this.

I'm late to this thread and wasn't going to contribute since my situation is different to most here, but I think I will.

My father was the prime and only caregiver for my mother for her journey with advanced dementia for at least 10 years, and it is likely that because that took 24 hours out of every day caring for her he was unable to take good enough care of himself and get his cancer treated. He died in 2005.

My mother was, shortly before my father died moved to an excellent care home mostly provided by Gloucestershire County Council for which we are eternally grateful. She survived 2 and a half years longer than he did, and survival is the appropriate word, but she did not have the slightest idea of where she was or what was happening to her or who I or my wife were. It was completely heartbreaking. But she was in good hands, and met new people several times a day (the same staff) which was quite bewildering to her. It was very difficult for us after my father died.

Now I am the full time carer for my wife - we have been married 44 years - who has been progressively losing her sight and has several other issues including some confusion. It is hard work, and I had to retire early to take care of her, but we look out for each other. She now has a Rollator which allows her more independence than me and a cane because it gives her some mobility back and confidence. I am always with her so can give verbal support when she is whizzing around and warn her of obstacles and traffic, but we function better.

We just returned from a test trip by car from home, through northern and northeastern France, Luxembourg, Germany and Netherlands and back by ferry. We were able to fit both enough luggage for 10 days in the boot and also her Rollator fully folded down. That was a real success, although the cobblestones in Laon, Picardy were extremely difficult.

So we just take every day as it comes.

We are welded together at the hip, but after 44 years we work well together.

Not on the topic of the OP, but... @mikliz97 - My husband and I have no family. He is now in memory care. After looking at the long list of things I had done for him while he declined, I began to wonder who would do that for me: tell me when it was time to stop driving, to move to assisted living, etc., etc., etc. My solution was to hire a senior care manager (RN + masters). She refers to it as "Rent a daughter"! She has been so very helpful, supporting me in my husband's care and checking in with me on any health issues I have.

@mikliz97- I am totally no expert. But if you think it is a good idea and your Mom is receptive I think that it is a good idea. Do you think she will freak out at the travel (in which case book a refundable ticket, for her) or at meeting the grandchildren? Do the grandchildren fully understand her condition. I suspect that if you would like to try it but don't it will niggle you in the future. I wonder if making it a surprise for the grandchildren may be an idea, in case the plan does fall through.
It gnaws away at me that after my Mom unexpectedly and very suddenly left home to hospital (in an ungainly fashion bumped down the stairs in an ambulance chair) then care she never got to say goodbye to her home which she had lived in for over 40 years and her garden. Although in her dementia it was likely a blur I regret deeply not getting her up here on a day trip from the care facility (to whom I am forever indebted) before she became wheelchair confined, and the layout of the house and the narrow garden access made that unviable. It mattered and matters still to me. Yes I have the "excuse" that each time a trip to anywhere from the facility was suggested Mum was not really receptive- they only got her on one of their trips.

I too have no family. I worry what will happen if something dramatic happens, a medical emergency or a dramatic decline. There simply isn't an easy solution. What I pray for is that if a medical incident happens to me it is sudden, instant and final, not something that leaves me in a state of limbo or dependency.
I thought three times on whether to write this post, am not sure if I should have, but hey I have now.

I missed this thread during its first iteration because we were in the middle of what turned out to be an end of life health crisis for my mom, who lived with us. What wonderful words of support, and it is so comforting to read similar stories, experiences, and coping strategies.

My mom moved up to Vermont from Virginia in 2019. She was in a retirement facility down there and reasonably content, but I was her only family member left (my dad and brother both passed away years ago), and we both felt that she'd be happier up here with me and my family. We built an addition on our house, and she moved in to her own connected, but separate, space four years ago.

Looking back now, I fully believe that this move was the right choice, but it was not easy. I find so many elements in common with the other experiences shared on this thread. My mom had a number of health issues, was mobility-impaired, could not drive, and, as we now realize, was likely entering early stages of dementia but managing to cope and hide her cognitive deficiencies very well. So I became more of a caregiver than I thought I would be.

Taking care of her was in addition to the care we already provide for my now-17-year-old special needs son. I quit my job when he was an infant so that I could stay home with him. He's far more independent now and is able to attend school, but it's still no picnic. So I understand and so much sympathize with the stories of caregiver exhaustion here. It is a long, grinding, relentless haul.

To answer the original question, when we went on vacation, we would hire a housesitter. This, for us, was a college-age friend of the family who we knew could handle checking in on my mom, keeping her company, bringing home takeout meals, and helping her as needed, as well as caring for our animals and house. My mom didn't need a high level of care at that point and was able to function fairly independently within her own space. Had she needed more care, we would have looked into hiring a home assistance aide from one of the local agencies.

For better or worse, my mom was hospitalized with an infection early this year that led to encephalopathy and delirium. She never fully recovered and came home for one week before passing away from a ruptured aorta.

The week that she was home was the worst week of my life. She had clearly entered mid to late stages of dementia, was not able to perform self-care, had substantial short-term memory impact, and was unfortunately aggressive and hostile. It was obvious that she needed to be placed in a memory care facility, but that was going to take time. We were having trouble getting home health assistance because staffing levels are so low. It was overwhelming, frustrating, and depressing, and it was a blessing that she passed quickly; she would not have wanted the future that she was facing.

So, again, my sympathies to all here who are going through or have gone through similar experiences. Take the time to walk away from your caregiver role when you can; you need the break to recharge, reset, and focus on yourself. Kind of like strapping on the oxygen mask first in an emergency -- you can't help someone else unless you take care of yourself. Hire private assistance if you can, investigate respite care at area nursing homes.

mikliz97, we have so much in common. My heart goes out to you. You asked about bringing your mom up to your home. I would encourage you to talk to her caregivers at the assisted living facility, including nurses and primary care providers, as every patient is different. I do know that taking an elderly person with cognitive issues out of their familiar environment can trigger a whole host of challenges, so you would want to get some advice specific to her capacities and then also be prepared in case things go south.

Best of luck to everyone. Hang in there, and prioritize your own getaway time, even if it's taking a walk around the block.

Nigel--Wow, that is really encouraging to hear, thank you.

Janet--Rent a daughter, I LOVE that!!!

isn31c--I do worry that mom will freak out at the last minute. The grandkids are all adults (late 20's/early 30's) and I know at least our two kids fully understand what is going on. They have both visited her, and our daughter has been with me on a few trips that included surgery for mom and various dr appts, so she is more in the loop than she probably ever dreamed. I feel for you with your mom never coming back home. That was my mom as well. She went to urgent care and was taken by ambulance to ICU, then skilled nursing, then assisted living. She did go back to her condo to get stuff on occasion, but at the very end, literally days before we sold it, she had another surgery and wasn't up to going back one last time. She has no comprehension of where her things are and last week she wanted to go to her condo. I drove her past, but of course someone else owns it now. I did tell her that her things are being cherished and used by all of us, but I could tell she was still confused. For some reason she thinks everything is in her old garage. I sure hope the new homeowners changed the locks! We took moms keys, but you never know. BTW I am glad you wrote this post. Any support is good:)

DebVT-- Oh my gosh, yes so much in common. Mom had sepsis which led to delirium. That is an ugly path to go on. I love your idea about talking to the assisted living staff. I will email them today and see what their take on it is. I never thought about it triggering other challenges. One upside of it though is our daughters home is ADA (original owner was in a wheelchair full time), so mom could stay with her and things would at least be easier with no stairs, walk in shower etc. Plus our daughters dog does not jump and ours do;) At least we have time to decide. I will be having knee surgery the end of August, so it has to be either before that or next spring/summer. I just hate to say let's do it later because we all know there may not be a "later". I am very thankful that we happened to be together for her 80th last summer, only about a month before all of this happened.

My brother and I made the decision to have our mother in an assisted living facility. As her health has declined we have supplemented that with a great home care agency who is with her all day. I realize that a lot of you probably think we made the wrong choice but realistically neither of us could quit our job and having worked In Senior care for years i also know that if you can’t do it right home care can be worse. She’s also been adamant that she didn’t want to live with us. (I also have a totally inaccessible home)

We do both travel for leisure and vacation. We have to for work and she wants us to for ourselves. When I was in Paris in March my brother would show her photos. She may not remember what she had for lunch but he showed her a photo from Paris and she could tell him where I had been.

I will say it’s stressful to be gone. This week I’m in California on business and he’s in London for business. I keep waiting on the crisis call as neither of us is close.

One thing we have done that I did not see mentioned here was a hospice evaluation. If you are caring for someone with dementia or other life threatening conditions I’d strongly encourage you to request an evaluation. Contrary to what you often see hospice should not just be involved the last few days/weeks. If the patient’s condition is expected to end in death within 6 months they can help. And with dementia we are now getting ready for our 2nd benefit period. We can see the decline but the pace is significantly slower than it was in January when we first had hospice get involved. They can help you arrange respite care to give you breathing room. Even if they can’t help you now getting the evaluation can give you good insights.

Since I never had kids I will need to look into a rent a daughter service😀

I am writing this quickly as I am leaving for my first real "getaway" trip in 3-1/2 years very early tomorrow morning. I have two good friends who will be helping my Mother while I am gone. I really, really need this trip. My Mom and I were both a little teary when I said Auf Wiedersehen late this afternoon (One of my grandfather's told me not to say good bye but Auf Wiedersehen as that meant till we see each other again.). But she will have support while I am gone and she knows I need a break.

All the posts on this thread have been so helpful to me. I thank you all. It has been thirteen years this month since I started my caregiving journey. The posters here have been so validating to me. I am not alone in my thoughts, feelings and exhaustion. My brain has always known that but sometimes my heart forgets. Thanks for the reminder.

Hang in there everybody. You are doing good, important work but not without cost to yourselves. I am sure most of the individuals we are caring for are appreciative. I believe even if our loved ones don't recall who we are they still can sense the love we have for them.

Take care!

Traveler Girl

Travelergirl--Enjoy! I hope you have the best trip! You definitely deserve it!

Seconding what Carol said about hospice. I didn't think my husband with Alzheimer's would qualify yet, but he did! When I found out he would now have more eyes upon him, I immediately put myself on the waiting list for a RS "My Way France" tour leaving May 9. On April 4, I found out I was on! Yay me!

I want to thank each of you who has courageously shared your story of caring for your loved one. We received mom's dementia diagnosis very recently; it certainly was no surprise but is still heart-wrenching. I am blessed that, for now, dad can (and wants to) care for her. My sibling and I will be actively involved, also making sure dad is cared for. We have the support of extended family. And yet...

As I lay awake pondering the future I found this thread; I am bookmarking it for days when I know I will need this "therapy"! I wish you peace, strength, and comfort in this journey.

Den,

Thank you for your contribution to this thread. I have found it to be helpful. As you have discovered, there are many posters here who have shared their experiences with caregiving for someone(s).

I write this as I take a break from filing my Mom's paperwork. And computing if she has met her health insurance deductible for the year. I expect if she has not, she soon will as she has a new diagnosis of cancer which is just being staged. It is too soon to know if my husband and I will be able to travel to Bavaria for three weeks in October. All reservations are able to be cancelled with little or no charge.

My father had dementia. It is an interesting road to travel as a family member. Your Dad will need your support as caring for someone with dementia can take a terrible toll on the primary caregiver, especially a spouse. I'm glad to hear you plan to support our Dad.

I will send good thoughts your way as your family learns to cope with the changes your mother experiences. Feel free to ask questions and share caregiving concerns on this thread

Traveler Girl

I will shortly be taking my first trip to Europe since my father got I’ll/passed (god willing and the river don’t rise)
I am going with family and Friends. Not sure how this will turn out but I am hoping for the best.

I spent a lot of effort and time and not a little money taking care of my father and it changed my live in many ways, some for the worse some for the better and some where just changes.

In my case as my father was fully with it mentally up to the end, but slowly lost his abilty to speak clearly the last month or two. But in the 18+ months before that I learned more about my father than in the 50+ years before that.

In my case I never had a chance to get away as at first it was not that hard to manage and it was in many ways just outings with my dad. By the time he got to the point he was truly harder to care for we had ran into Covid and thus I couldn’t go anyway so never got a break.
So I can’t truly give anyone any advice in that regards.

But I can tell you to take care of yourself. I didn’t and my health took a hit that is still not completely recovered. Also be very careful after your caregiver ends as in my case about 6 weeks afterwards I ended up in the hospital and from what i understand that is not uncommon as once the stress decreases you body can succumb to the wear and tear it had suffered along the way.

By the way to those of you getting up there in age. Let my father be the example. At 86 he went to Europe averaged 6+ miles a day and went on a white water rafting trip. So stay positive! Even after getting a terminal diagnosis he never gave up.

Traveler girl, I hope your spring trip was everything you wished and Douglas, that you will have a great trip with your new travel companions.