The Damage Friends Do – secret hurts to caregivers

Being a caregiver for someone close is like being a resident in a war zone. Ok, that’s a bit of an overheated simile but there are similarities.

First, of course, is that the future is unknowable and so the only way to survive emotionally is to learn to manage your expectations i.e. live without hope except for a painless and relatively graceful end.

Second, other people without similar experience just cannot understand the breadth of impact. Like real soldiers can be distinguished from poseurs, in the online support groups professional caregivers are, unintentionally, distant from the real damage; their advice and statements don’t encompass the underlying pain of having a loved one be affected.

Lastly, there is invisible damage. I can’t even joke with my wife in the good times without thinking back about how much she has changed and how today will probably be better than tomorrow.

But that is the surface, the obvious disturbance.

The real potentially, lasting damage is to the caregivers’ beliefs.

I don’t mean beliefs only as one’s adherence to the existence of a supreme being with some day to day influence, although I can see how people with religious convictions can be really challenged by the continuing evidence that, if a supreme being exists, that being really doesn’t care enough about how we feel to intervene in this course of disease.

No, I am referring to the other beliefs each of us has in varying degree to various elements in our life โ€“ beliefs in institutions and organizations, belief in other people and belief in oneself.

Yes, I can accept that, regardless of the fact that people have been studying this disease for a couple of decades, there is no treatment, none, zip, nada. Too often, if I tell caregivers my wife’s diagnosis, the level of real understanding is trivial. So, except for a prescription to manage signs or symptoms, I’m on my own with this.

It seems that many or most caregivers suffered from the loss of contact, the increasing isolation.. Friends, and even family, seem to fade away. What I have believed to be strong ties have turned out, in the face of disease, to really not exist.

And the last, most painful of all for me, is the realization that my ability to assess people and relationships was not what I thought. So much of my feeling of personal security in my life was based on my faith in my ability to judge potential friends.

When my ability to assess people and judge them as friends was destroyed or damaged, then the comfort of security drained away and the world seemed a much more empty and lonely place.


Thanks for reading. I would appreciate any comments or if you mention this blog to any of your friends or relatives who might benefit from reading one man’s perspective.

13 thoughts on “The Damage Friends Do – secret hurts to caregivers”

  1. I too have been floored by the lack of understanding and even cruelty from health professionals not versed in dementia. I long ago went through similar experiences of heartbreaking isolation not so much with friends, but with family for both of us with the loss of our parents. We saw fury, blame, viciousness on his side, abandonment for me on my side. We have been each others support through all of it. away from me for their own reasons in the midst of caregiving both my parents and subsequent passing just a few years ago. Friends i can choose, If i ever have to go through another hospice experience alone, I’m afraid my grief will show no mercy on those who get to chose to step away. What do we do for those we love, if not now, when? As a close friend always repeated to me, no regrets. Water finds its own level, keep posting, find new connections.

    1. Mary, I used to be actively angry and eventually I came to realize that anger wasn’t useful, it made those people more important than they turned out to be.
      So, I pushed them, and anger, out of my head. I treat them, when we meet, as if they were just acquaintances with no ties to me.
      That leaves room in my head and heart for more important things.

      1. I’m not angry with my brothers, just confused and sad, I get it….my husband’s sisters are vicious on a whole other level, and I feel lucky not to be part of that anymore. My issue is grief, the tiger that cannot be tamed, the shade that flaps up with no notice….it just apoears, and when it happens, you go deep inside yourself to find something in your soul to hold onto. My husband and I are bookends…..i fear his loss in a profound way…each day with him is more treasured than the last. I wear a bracelet that says “love remembers”….everything can be destroyed,….but true love holds on..

      2. I’m not angry with my brothers, just confused and sad, I get it….my husband’s sisters are vicious on a whole other level, and I feel lucky not to be part of that anymore. My issue is grief, the tiger that cannot be tamed, the shade that flaps up with no notice….it just apoears, and when it happens, you go deep inside yourself to find something in your soul to hold onto. My husband and I are bookends…..i fear his loss in a profound way…each day with him is more treasured than the last. I wear a bracelet that says “love remembers”….everything can be destroyed,….but true love holds on..

  2. I say this knowing that my journey is still young, only 3 years thus far, however; I decided early on that it was up to me to take control of our destiny. Of course, I have no control over the disease (PPA/FTD) but I do have control over what environment I want to exist in as we walk through to the end. After much research, we moved to an area that was socially inviting, conducive for an outdoor active life and abundant in community resources. Relying on just friends and family to meet our emotional needs would have landed me in the pit of despair. Don’t get me wrong, I have lots of deep, healthy relationships, but imposing that assumption on them would have set myself up for disappointment. My expectations would have been too high on them and too low for myself. Instead, I released them before any hurts occurred. I still have great relationships with these people, but I’m just to busy making a life for myself and my spouse to sit around counting how long its been since I have talked to them. I have set about establishing flesh and blood relationships with others that are walking the same walk as we are. Those who live it, so they get it. They are all around us. You don’t have to look too far to find those dealing with dementia. AARP’s connect2affect program states that prolonged isolation is the equivalent to smoking 15 cigarettes a day! Someone has to reach out and connect with those living in isolation, so I decided that if I did then I wouldn’t be isolated myself. I find that when you are emotionally healthy and optimistic yourself, others want to be a part of your life. Caregivers don’t have to accept the collateral damage that naturally occurs if you sit back and do nothing to prevent it. Find what bring you joy and do it.

    1. Although you and I have dramatically different situations and, more importantly, different expectations, I hope that everything works out for the best for you and your husband.

  3. Oh my goodness, I know exactly what you mean! I’m in a similar position albeit I am my husband’s carer. We had a crisis in 2013 which is what uncovered his illness, followed by his diagnosis in 2014. Until then, I thought we were “going through a rough patch.”

    We live in a pretty remote rural location and I thought my loss of judgement was due to the nature of our crisis and the fallout from it. As time has gone on, my daughter and I (she lives with us) have commented how we just don’t trust our feelings and judgement anymore, and then we wonder if that’s the correct assumption because we’re pretty rubbish at making judgments these days!

    It’s only when we venture out of our self inflicted rural isolation that we realise how poorly husband is and how much our own behaviour has been modified to cop with his illness.

    We too, are very fed up of people making rather crass statements like “he doesn’t look poorly,” or “my relative had dementia.” So very few people (including the professionals) know about FTD. We get zero support apart from medication because “…well it’s not like Alzheimer’s is it. I mean, his memory is fine.” So, we long for the day when his memory does go and at last he gets some peace because then he won’t know how poorly he is. Till then, we live in splendid isolation, not trusting anyone, least of all ourselves, and we watch this wonderful man slowly fade away.

    All I can say is, I must have been bloody wicked in a previous existence ๐Ÿ™‚

    1. Thanks, Rachelle, for taking the moment to comment.
      It means a lot to me that others reflect what I see about my own circumstances.

  4. I could have written this. My husband has younger-onset Alzheimer’s, diagnosed 5 years ago, and until recently I had a full-time job (which I lost because of caregiving issues).

    Several years ago I was betrayed by a group of friends in a couple’s group at church who helped with a couple of projects at my house, for which I am truly grateful (and told them–even wrote a blog about it as well as mentioning them in a talk I gave at a women’s retreat). But when some other people they didn’t even know made promises and then didn’t come through, I felt let down and expressed as much on Facebook when I posted a very good article about caregiver abandonment. One member of this group emailed me “What’s up?” and I expounded on my difficulties and disappointments, as well as my sense of isolation and abandonment. She forwarded that email to the rest of the group with “Ugh” and that launched a tirade of hateful, cruel comments implying I was greedy, ungrateful, and not taking proper care of my husband. I was criticized for wanting to continue church volunteer work and my hobbies (as if I’m not allowed to have any enjoyment in my life). One woman actually said “What does she need respite care for? She has her job.”

    This email string was a “reply all” string, but the initial email to the group left my name off the distribution list. As luck would have it, after about 5 rounds of ranting and slander, somebody replied to the original group list, including me, and I saw the whole thread. The person who forwarded it apparently came to church and to my house looking for me, but we weren’t home that weekend.

    After seeking spiritual counsel I replied to the group in a lengthy, well thought out response, and got hateful emails from three people saying, essentially, “I’m sorry you are hurt but not sorry for what I said because this is how we feel.” The directly accused me of not providing proper care to my husband.

    The person who came to my house eventually apologized and promised to talk to the group, but to this day, more than 2 years later, they cannot look me in the eye. It is the deepest, most hurtful betrayal in my life, and when I talked to my pastor about it his jaw dropped and he said “that is unforgiveable.” It still hurts, years later. I’ve talked to my therapist about it and he was also speechless.

    About the time this happened somebody called Adult Protective Services, alleging abuse and neglect–probably because my house didn’t meet their standards of cleanliness (it doesn’t meet mine, either). The social worker who investigated was impressed at what I was doing. I even gave her several names and phone numbers of resources she didn’t know about. I was copied on the letter to the person reporting (with the name redacted, since it was an anonymous report), and it was a glowing appraisal of how I’m managing home and care while at that time having a full time job.

    If that betrayal wasn’t enough, I can’t remember the last time we were invited out for a social event or to friends’ houses. Hubby is not incontinent, he is fully ambulatory, and while he isn’t particularly verbal, he is very social. If I don’t initiate social activity, it doesn’t happen–and often those asked are “too busy” or will “get back in touch to set something up.”

    I see caregivers in online groups express sadness at their friends and families posting on social media about their trips, parties, girls’ nights out, and other normal activites. We hear from these friends that they are thinking of us or praying for us, and once in a while somebody brings dinner or sends a gift card, but the social isolation is awful. Shoot, I’d just like to be invited out once in a while–even if I can’t go, I’ll feel like I’m wanted and included–and that these people know I’m still alive.

    I don’t want to trivialize cancer and heart disease or other acute illnesses and surgeries, but they are much more glamorous than dementia. They’re easier to understand, and therefore people are much more willing to help out. They’re also usually shorter-term, with either a full recovery or an estimated timeline. There is closure within a reasonable amount of time.

    Dementia doesn’t have a timeline. It’s not pretty. It’s not heroic or glamorous. Nobody survives it. And nobody wants to be around it.

    Sorry this is so long. I needed to get it off my chest.

    1. Samra,

      People disappoint for a lot of different reasons – and, as far as I’m concerned, none of those reasons are good enough to balance the hurt that is inflicted by abandoning both the caregiver and the person with the disability.
      I’m not actively angry and wouldn’t act on any feelings it has been a major disappointment that, in the midst of teh disease, I don’t need and didn’t anticipate.

      Best to you,

      Lew

  5. I am so sad for you. My husband has FTD/MND we are atheists so we have perhaps less expectations of those with shared religious beliefs. I have been a full time career for several years during which time I learned that the buck stops with me. Sometimes my heart breaks. I watch the sun set and feel able to face another day. I see beauty all around me and absorb it like food, when I am at my wits end I find spiritual support in nature. I trust no one, I expect no help, I will care for my husband until he dies, or I die. I loved the person he once was more than life, now I prove it daily. There is no joy, no fun, no laughter but I am at peace with myself. I will do the best job I am capable of – as we all do. I long for some kind gentle person to hold my hand and say encouraging words, it does not happen. I am not stronger than depression, I am not braver than loneliness, I am exhausted.

    1. Bronwen,
      Thanks for both the reply and the language, which was beautiful in itself. It is interesting that you wrote because just a few minutes ago I was thinking that we didn’t go to dinner at our very nice neighbors, because Jackie slept through it, and I didn’t really miss it. When we are peaceful here together that a reward for all the difficult stuff before.

      Best,

      Lew

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