The Mirage of Caregiver Support

Bill_2001

This is a follow-up to my article “The Cavalry Is Not Coming.” It is meant to be instructive, without being overly dark and whiney.

Eight years into this journey, I am long past the realization that the Cavalry Is Not Coming. I am on my own in the care of my wife with vascular dementia. I have absolutely no expectations remaining that anyone, anywhere, is ever going to provide any level of tangible, meaningful help to me and my wife. I will have to carry on with this exhausting journey until one (or both) of us is gone.

I want to share several anecdotal experiences I have had in regards to the many mirages of help that appear in the desert of caregiving. If you are new to caregiving, hopefully this will help you lower your expectations a bit in order to avoid the disappointments I have encountered. Experienced caregivers will probably just nod in agreement.

1 – Our church. We had attended a neighborhood church for fifteen years prior to my wife’s dementia. We were also quite active and helped with many community programs. One evening, I was feeling defeated and just wanted to see what the church could do to help me in this crisis. I did not expect a lot – just maybe some sort of support. I called their prayer line and listened to a recorded message. It prompted me to leave my prayer request as a voicemail message. I poured my heart out for three minutes and left my contact information. No one ever responded. And I tried multiple times.

2 – “Get paid to take care of a loved one” commercials and billboards. If I only had a nickel each time a well-meaning friend suggested I call one of these providers. The fine print that friends never see says “If your loved one is on Medicaid….”

3 – Family and friends. Over the years, I have received numerous “How is your wife” and “How are you” calls and texts. These have dwindled to nearly none. I have one friend remaining that checks on me regularly – and I am ever grateful. No one else bothers much anymore, and when we do chat, it is easy to tell that they are simply weary of my caregiving woes. I am so sorry that my ordeal has outlasted most peoples’ depth of sympathy.

4 – Visiting senior companion. For about a year, we had a senior from a local non-profit come over and “sit with my wife” for two hours or so each Saturday. The idea was that I could get some things done and know that my wife was being looked after. As nice as that is, the visiting senior could not/was not permitted to really help with anything. If my wife needed to use the restroom, I still was on duty. If my wife was eating, I was helping. Basically, the “visiting senior” was just another reason I would have to get up early and spend all the time needed to get my wife up and ready. It was easier to let the program lapse and just be on our own again.

5 – Meals on Wheels. Early in this dementia journey, when my wife was still able to be at home alone for a few hours, I had arranged for Meals on Wheels to deliver lunch. A side benefit was that they also considered their visit as a wellness check, so I could be away for a while. It all sounds terrific, but for someone with dementia, I learned that it just does not work. Sometimes my wife would simply not answer the door. (This is actually a good thing when you think about it.) When she did accept the lunch, my security cameras showed me that the person simply handed the lunch to my wife and left. There was no “wellness check,” unless just seeing my wife counts LOL. Lastly, I would arrive home and find that my wife had only eaten the cookie – the remaining meal was just sitting on the table, untouched. Fail!

6 – My wife’s daycare. This is a godsend. If you have access to an adult daycare, I encourage you to look into it as an option. I truly believe they care about my wife. However, they do not offer any classes/groups/programs for caregivers to learn coping skills. Each time they contact me, it is usually to give me yet another medical form for her doctor to fill out, or for some test or vaccine, or the billing department with my monthly four-figure invoice.  A simple “and how are you doing these days” would go a long way. Sigh.

7 – Memory care homes. I have avoided them so far, but one never knows what the future holds. I have two on standby, in case the need arises. Simply put, these are places that you pay to “care” for your loved one with dementia. Even after this drastic measure, I really don’t know how much they will reach out to me to see how I cope with the loneliness, and the shock of my wife leaving our home. I have used respite twice, and the resulting emptiness wiped out any “rest” I was supposed to get. It was traumatic for me – but the focus was squarely on my wife’s care. I am grateful for that, but this is yet another area where caregivers are simply left twisting in the wind to deal with the greatest heartache of our lives.

Prepare yourself – you will most likely be able to find care for your loved one, but sympathy and care for you as the caregiver will be sorely lacking. There will be many mirages – glimmers of support for you – that will simply fade into nothing when you look closer.

Thank you all for listening.

Love, Bill_2001

Jgirl57

Thank you Bill_2001; I am beginning to see the “ mirage”. You have a way of getting to the heart of the matter with your writing and it is very helpful. I am hoping to try daycare again at some point. My HWD/Alz did not like it last year when we tried but I think soon he might be more accepting.

Denise1847

https://alzconnected.org/discussion/66893/the-mirage-of-caregiver-support

Hi Bill, I am 7 years into this hell since the signs of alz appeared. Your post is spot on. I have come to realize that most people are so absorbed into their own lives that others around them become a blur. It is, indeed, a bleak journey. The only positive thing coming out of this is my spiritual growth. I know I could not endure this without daily prayer and crying out to God, who I know walks with me. The journey from shock, to denial, to anger, to resentment, to realization, to acceptance and reflection are so clear to me now. Bill, be strong. At least we now know who our true friends are, and that is a blessing.

Faith,Hope,Love

Hi Bill,

I remember reading your original post "The Calvary is not Coming" and it was so true. This post is very accurate, too. I too, have come to the same conclusions, with one exception. I ended up bringing caregivers from Home Instead in for a few hours each day to help me care for my DH. He had gotten to the point to where I couldn't manage him alone. They were trained in caring for dementia patients, incredibly helpful and amazing. Two of them had been with me for 6 months prior to DH's passing. They actually became a part of our little family. I'm still in touch with them and they visit regularly. Out of all of this, somehow, we formed a friendship and bond that has lasted.

Ed1937

Another "right on" post, Bill. Thank you.

Davegrant

Bill,

Thank you for your articles. When I read your writings, I actually feel better probably because it validates what I am experiencing. I have signed up for all the resources, but they really haven't worked, or my wife didn't like them for one reason or the other. The truth is that she only wants both of us to participate or she is too worried of what I may be doing if I am not with her. When we are together in groups her social behavior has declined to the point that it is often embarrassing due to my wife's comments which are often loud and negative.

Thanks for your thoughts.

Dave

mrahope

I completely get you on a lot of this. FWIW, though my family has been mostly supportive, nobody truly understands what it's like to be in a house with this 24/7. Our local family are coming close.

Anna2022

@Bill_2001

Thank you, Bill, for the posts!

I've read your earlier post on the Calvary Is Not Coming and found it enlightening and instructive (that post is bookmarked!). This post today, is already coming true for me and my DH, who is dx with MCI but I personally suspect is in early to mid stages of Alzheimer's. Here is my experience thus far:

Local Friends have stopped calling - my therapist says most people don't want to be around the sadness! - and when they do call, it's to ask me to do something away from the house, without DH, for hours on end. I have to decline many such invitations for obvious reasons, and so after many "rain-checks," they have stopped calling. They seem to increasingly decline my requests to come by and have coffee/lunch/dinner and chat here. I understand their reluctance but that doesn't make things any easier.

Long Distance Friends call me regularly and pick up when I call - this is a lifeline. Sometimes, I even avoid their calls because sometimes I don't want to talk about my life or hear about their most recent activity/trip/party/good times. I'm human, I guess.

Our PCP, whom my DH and I both see, has merely said unhelpfully, "you need to get a handle on the stress otherwise...." Super unhelpful and maddening.

The neuro-psychiatrist office, has stopped calling to schedule any followup appointment (DH refuses to go see any such doctor now) although I know/hope they are there when we need them.

Some family members, who are not in our city, call to offer verbal support and check-in, which is helpful.

My therapist has personal and professional experience with the dementias, hospice and care-taking, has been a super great source of help and support.

This Forum and connections made here have also been life-lines, full of practical advice and shared lived experiences that let me believe the fiction/know I"m not alone.

I attend online ALZ and AA support groups (I am 30+ years sober) in my area. These friends are invaluable to my mental health.

I practice self-care (whatever that term really means) by keeping structure and routine, daily exercise, reaching out to certain friends (who still answer my calls or return emails/texts), regular therapy, regular anti-depressant and sleep medication, and daily I get up early to walk the dog and to have unfettered silence and meditation.

On a regular basis, I ask myself, "what else can I do?" I'm out of ideas. As things progress, I know in my bones, heart, gut and head that I will often feel alone on this journey. So far some days are OK, other days I crumble with the weight of it all.

Caro_Lynne

Bill,

You have the gift of being able to pen what I/we are going through - thank you. I too am on this journey alone. My family is my support and am lucky to have my youngest son living close by; he is such a great help to me even if only to watch him for a few hours on weekends when I need to do things without my LO.

My LO is my former partner. We are best friends; he has no other family and I promised him (prior to his vascular stroke) to always take care of him. I pray I can keep my promise. Prior to his stroke and craniotomy, he was showing signs of cognitive decline; forgetful, repetitive, nothing major. He came home a totally different person; from stage 1 to stage 5 overnight! It is heartbreaking.

I'm going to check out the daycare facility near me this week and hope I can take my LO a couple of times a week.

Hugs to you and your wife xo

ghphotog

Bill, words and experience only a caregiver for someone with dementia will ever understand. They just can't unless they live it day in and day out 24/7/365, year in and year out.

I have good friends that really do care for us and check in on us regularly, are there for emergencies and we get together with for dinners at a restaurant or at their home hanging outside having a beer or two. I don't know what I would do if I didn't have them. They are great as long as we are all together but friends like that are far and few but to ask anyone to babysit more than once or twice while I try and play golf or get out is too much for anyone that is not forced into this because of a spouse.

Taking care of someone with mental disabilities / dementia that is not a loved one is a request too burdensome for just about anyone to do more than once without being paid and having special training such as a daycare or MC.

As you said, daycare has been my best option and I believe the staff there understand. They always greet her with a warm smile, welcome her in and look after her faithfully until I return to pick her up but really we are on our own. Not even family, brothers, sisters, sons and daughters can deal with it more than once or twice on occasion even if they truly truly want to help. It's just too hard.

ghphotog

These posts have got me to thinking a bit more.

For the first few years I did feel all alone but I'm grateful for friends I don't want to forget. I have some that fill our freezer with ready made meals, pay for house cleaning once a month and are there if I need to talk. Other's are there and will fill in if I have an emergency, other friends we get together with for nights out. None of them judge me if I'm drinking too much on occassion or when things are crazy and I'm going half out of my mind as well. Many are christian friends and some aren't but they are all great and I appreciate everyone of them.

I felt so alone for so long. I felt deserted by even our own families but God has provided good friends and I hope for those of you out there that are alone that you will find support where you can.

Beachfan

Bill,

Everything you say is true in some way, shape, or form for everyone on this journey, regardless of how far along they are in the Alz progression. But as a traveler for over 13 years, and having crossed over into stage 8, one thing remains constant for all of us. Your life, as you once knew it will never, ever be the same again. Even in stage 8 when the caregiving burden is over, your life is irrevocably changed. And sadly, in spite of all the support in the world, the primary caregiver is really all alone in the trenches, start to finish. I was fortunate to have ongoing strong family and friend support, and for the final 17 months the comfort of MC placement to ease the burden. But in the dark of every midnight, I was all alone with my sadness, fear and despair. Even now, 6 months after DH’s passing, in spite of renewed social outings, renewed travel opportunities, and relief from caregiving, in the dark of every midnight, I am still alone.

For me, the only acceptable solution to the whole Alz dilemma is for it never to have happened and that ship has sailed. Stay strong; you are not alone in your frustration. It will get better.

charley0419

https://alzconnected.org/discussion/comment/186956#Comment_186956

I see changes everyday scary illness

boxsterman

https://alzconnected.org/discussion/66893/the-mirage-of-caregiver-support

Very well-written letter, Bill. I am just in the early caregiving stages and have a loving and willing family to provide relief/support. Your letter was an eye-opener and I pray for some positive change for you.

ghphotog

Bill, I hope you are doing ok. I know it's only been a short while since your DW's passing but I hope at some point you find balance, inspiration and peace in life again and find "your" way. For as long as you cared for her your way was "only" her way, day in and day out. Every decision you made in life was based around her so it must be hard to know the choices you make are for yourself now. I'm sure that will take a while.

RickM

“in case the need arises”

In my situation it was, at the time of moving my wife to MC, my need. That’s a hard pill to swallow. Watching her fade away was heart wrenching. I needed time to grieve and find a path ahead that would likely be the least horrible for her and I.

My respite (a week long journey on a river in the desert) provided me with an opportunity for clear thinking. I guess it was a choice I made for myself. With her now firmly in stage 7, I still lament having moved her but no longer second guess myself—if that makes any sense.

While MC hasn’t really “reached out” to address my emotional needs they are responsive to my wife’s needs and my concerns when I bring them up. What is helpful is that the staff, residents, and family and friends of the residents provide me with a connection to more people living in dementia land. It’s an antidote to the isolation I felt while caring for her 24/7. It’s an antidote and an opportunity for me to search for ways to deal with the emotional baggage that I will probably have to carry around the rest of my life.

***oh and then there’s the financial baggage 😒 That indeed can be a hard one to deal with

Bill, thank you for your writing. You provide great insight to all of us which brings out lots of valuable discussion. Needless to say, everyone here has deep sympathy and cares greatly for you as a caregiver. We understand

PS. I forgot to mention that Hospice care in my experience (both with my dad and now my wife) can be a godsend, not only an additional layer of care for those with dementia but also for the caregiver’s spiritual and emotional needs.

Take care,

Rick

toolbeltexpert

Bill I read your posts and sometimes several times. This may be one of those?. I read and understood what you said about the "prayer line" our church had one and it always went unnoticed till the blinking light got noticed. It's only good when it gets some legs, otherwise the folks who thought the church would help get disgruntled with the Church. Our church did respond sometimes, I responded more than once. I get what you said! As I was reading others responses, thinking of how all the best intentions are not worth a hill of beans till someone gives it legs.

The more I read the more I thought about what has been the most help. @RickM you nailed. I get more help, compassion empathy, listening ears, from the other caregivers at the memory care and that does include staff. They become the family that puts legs to what is most important. They comfort my dw when I take a trip, they cheer her up, they sit with her. We all do that for each other. The mc staff picks up after we leave. I know of 3 staff members who also care for a family member with dementia at home.

This forum Bill as you well know is the only family that truly understands. I know some of us would put physical legs to it if we could. A lot of us pray. That maybe the only way we can put legs to it, so I do that. Your words come in my ears when I pray, as I said I read your post and I pass it on as well as all the others

I am glad you have been an example of the things we need to do. You have your routines you do to keep you going because it's important to keep you going.

Bill I wish I knew when my dw's journey would be finished, I know I don't want to let it play out fully to the end. I have told the mc that if my wife decides she's not gonna eat so be it,I am prepared to let go now.

Thanks to everyone who contributes to this forum family.

Stewart

FTDCaregiver1

I'm into year 7 now caring for DW, I'm 58, she's 60. Agree no Calvery running to us, but hope is there in navigating the morass to find help...but you got to reach them...they aren't coming for you! After multiple...Mental Health failure stays...Memory Care kick-outs due to anxiety (yelling, screaming), 16 months to achieve SS disability status (final appeal) and on and on and I'm finally caring for my wife back home, as of today, with disability insurance and help with our local PACE program at home to provide in-home day care 5 days a week, in-home respite care when I want a break and supports (diapers, pads, wipes, supplements, medications). That did not happen overnight, it took a long journey, too freakin long to write here, but what I've learned over these past 6 years is one thing. My wife will only get the best care so long as I'm willing to be engaged in every aspect of that care, doesn't mean going it alone.....I am her guardian, her shadow and always present, even when I leave my home and a day care worker cares for her. Year 6, I now work with a network of helpers, daycare workers, supervisors, psychiatrists, suppliers of our supports. For me, it was a journey of many years to finally connect/convince partners to help me, help her! If there is any Calvery....it us caregivers! Advocating, and when need be, step in with doctors and psychiatrists on critical decisions on mental health and health care, attaining SSDI benefits, managing oversight of memory care and mental health placements (we've had 4 of each thus far). Leveraging in-home supports from programs like PACE.

Jeff86

Bill — I too have read your posts closely, and it’s clear that you are really thoughtful and clear eyed as you share your caregiver journey. It’s your lived experience, and it is valid as it is dark. I can relate to much that you relate, as can most of us spouse/partner caregivers, even as each of our DH/DW’s journeys are unique. Seven years into our caregiving journey, I have certainly experienced the shrinkage of my universe, as you describe—friends and family unable to go the distance, and so on.

I think the gist of your post is the lack of support we spouse-caregivers get, wherever we turn. Even when and where we get good support for our LO, we may be left with a feeling of, what about me?

So I thought I would mention that for a few years now I have participated in a caregiver support group, sponsored by my local chapter (Hudson Valley) of the Alzheimer’s Association, geared solely at spouse/partner caregivers. Originally in person, monthly, the group moved online and to a biweekly format with Covid. The focus of the group is us, caregivers. Lots of excellent information about local resources, but also open season for any of the many endless challenges and issues we as caregivers are facing.

I appreciate that you’ve had a long series of disappointments on the support front but the spouse-caregiver support group has not been a ‘mirage.’ Might be worth you exploring the availability of something similar in your neck of the woods.