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The Mirage of Caregiver Support
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, Bill2001
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Dear Bill,
Thank you for sharing this reality. I am relatively new as a caregiver for my husband with MCI, diagnosed early this past summer. We are pretty much joined at the hip 24/7. We are still working at our small business, with me frequently helping him to stay on track, which is becoming more and more difficult and exhausting. On the home side of things I am constantly “finding” misplaced items, trying to deflect the angry outbursts that come my way as I try to explain why something isn’t a good idea (frequently because he wants to buy things we don’t need), taking care of the finances, meal prep and household chores.
I try to steal time away for myself by rising very early to read, exercise, and plan for the day ahead. I did check into the program, “Powerful Tools for Caregivers” (PTC), but find it impossible to attend the sessions. I have ordered the companion “Caregiver Helpbook”, which can be obtained via the PTC folks or by ordering via Thriftbooks.com at a reduced rate. I also ordered “The 36-Hour Day: AFamily Guide to caring for people with AD, MCI, etc. Both of these suggestions were given on this blog. I’m just trying to prepare myself for our future without burning out completely.
I am trying to remain positive and am hoping this stage will remain steady for a few years but I am also aware that this is wishful thinking. I feel that I have found “my people” by reading this blog, as I can relate to the frustrations that are shared. I also feel a wee bit empowered by your honest observations and others who have suggested helpful approaches to caregiving. God bless each of you and know that you are helping others by contributing to this blog.
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18 Reactions"1 – Our church."
I hear you. After my stroke, I was disappointed by the responses I didn't get. Not a single offer of any kind of help, even a ride to church. This despite years of very active participation in the church community.
A handful of people stayed marginally in touch via email for a short while, but drifted off. Finally, only one person was left. I sent an email saying, "Thanks for keeping in touch." Never heard from that person again.
I'm very fortunate that my wife is so capable and loving, and I'm recovering slowly but able to help out in small ways.
Your situation is obviously much more difficult. I pray you can find some resources to assist you.
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5 ReactionsI have been eight years with this same situation. Early on, family members helped with the arrangements and Dr appointments to get the Alzheimer's diagnosis. Medications have helped but the 24/7 suspending of any personal freedom have made a normal life impossible. Family and friends have slowly distanced and my adult children have outright refused to take her for even a day or two so I can accomplish necessary projects and errands without constant shadowing and questioning. I was struck by this comment you made, "... but this is yet another area where caregivers are simply left twisting in the wind to deal with the greatest heartache of our lives." There is no solution or end in sight except the obvious one, which will only lead to more heartache for one of the two of us, after these 60 years together.
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19 ReactionsOh Bill - I do hope you are writing a book - you put thoughts into truthful words that are echoes of the lonely, lost, exhausted emotions of loving someone you are losing in an unbelievably painful manner. Today, when I thought my heart could not break anymore, it rips in another unforseen place and a new depth of loss is felt.
The problem experienced at the moment centers around others' unsolicited advice that is being made in the form of manipulative, silent demands. Family/friends that at one time promised to " walk this journey" have backed off with the idea that if they do not help with anything, then I will be forced into hiring help to come into our home. It is as if they are afraid if they help a little bit, then more will be expected. The church that I have attended and served in many capacities since I was 7 (61 years) has put our names on the prayer list, members have said "I will call you next week" (has never happened), offered to sit if needed (just more empty words) followed by the endless "suggestions" of places that might help. Or the statements, "When you realize that you need a facility in which to place him, then your life will be better," or " When you finally place him in a facility, then you will wonder why you didn't do it sooner," or " Your hubby is being well taken care of, but my main concern is you." All empty words. The best part is that I know they have their heart in the right place and say the right words but nothing is going to happen. No one can understand the loss and the loneliness of a beautiful life that slowly dissolves moment by moment - until the loss is personal - so I forgive and move on with a focus on my husband that is determined to finish strong. Recently I saw a sign with three words:
DETERMINE
COMMIT
SUCCEED.
I determined that I would walk this journey with faith and love, I am committed to embrace the unknown daily occurrences with strength and patience (some days are better than others, but I always know tomorrow is a clean slate), and the last goal is to succeed in loving him and taking care of him- even though he resembles the man I fell in love with so many years ago less and less- as he is, where he is, until the promise "till death do us part" is fulfilled by one of us.
Thanks again for putting into words your understanding, yet hurting heart that so many of us can embrace with an understanding unique to this journey.
Always,
Jan
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15 ReactionsThank you Jan for, “tomorrow is a clean slate”. This helps immensely. Let go of the frustrations of today and hope tomorrow is a better day.
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8 ReactionsSad to hear, but comforting to see so many others are in the same boat.
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7 ReactionsMy husband is also in a buying stage. He bought a grill. We dont need a big 5 burner one you have to put together! He goes to sams club buys tons saying oh it was on sale. There is only two of us. I have multiple bottles of 128 laundry detergent! Barbque sauce, lipton onion soup. I could go on and on. Pork! Full pork loins and full rack of ribs! He gets angry if u say something. So hanging in limbo do far. 🤷♂️ not sure how to handle.
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10 ReactionsThank you Bill for yet another affirmation of what we've all felt at one time or another...or will feel in the coming months/years. If only we could somehow change things. God knows I've tried. Diet, supplements, essential oils, music....it's like a run-a-way freight train. There's no stopping it. Your words though are so well written and so very true, I can only say thank you. They actually somehow make a difference.
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11 ReactionsHi Bobbi- It's nice to meet you.
In your situation, along with my suggestions, you need to speak with his doctor. It sounds as if your husband might be in a compulsive stage. There are medications that can control this. I had to give my husband an anti-depression medication that quieted those impulses. This is imperative, I think!!
My husband was never a "buyer," but he had his quirks too. I had to keep a close eye on him. The one thing that did make him angry was any attempt to take away his freedoms. Mostly, he was afraid of losing his license or being constrained.
The first thing that I did when this problem came up was to tell him that I would do everything within my power to prevent him from being constrained (unless he were to harm anyone, and secondly, if he didn't want his license taken away, then I would have to drive him everywhere he wanted to go. Those were my conditions. And for David and me, this worked because he was a reasonable man, despite his vascular dementia.
In your situation, if I had to squelch his spending you might want to take away his license so he couldn't drive, or have the bank shut off his credit cards- those in his name and get one in your name only. The bank can help with this. or a lawyer.
It's not a great situation to hang in limbo and let your husband spend to his heart's content. You must be stronger than his disease by protecting yourself against losing everything. Looks like he likes to buy a lot of things at once, don't wait until he brings home a herd of cattle and not just the ribs!
Can you talk freely with his doctor and come up with medications and plans for the future?
Merry
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11 ReactionsMy husband is in the denial stage. He says he does not have LBD as he has no symptoms. He has been telling everyone that her was misdiagnosed by an “intern” at mayo clinic! He was at the dr yesterday for a long talk. Yes u have LBD, your zoloft is not. A mind altering drug. Yes you were in on the decision to take. Yes you were here oct 9 and was in on the decision to have a 50 mile radius driving restriction. He has courage kenny drive evaluation nov 8. He is very angry at anything such as you described freedoms away from him. Drive, financial. We have poa in place but a dr has to deem him unable to care for himself before it can be activated. . We are not at that place quite yet. It is coming I see now.
I appreciate your advice. I hope we r able to keep in check. I didnt know about a compulsive part of lewy. I am learning so much.
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6 Reactions