Uncomfortable with my feelings toward my LO
Hi fellow warriors, First I’d like to say that I know there is no answer to my situation but I need to at least vent. I am absolutely going crazy, which turns into self-loathing because I am not handling my situation at all well. I am deeply, deeply depressed. My DH and I have been on this journey for 7 years now. It’s been mild and semi-ok for a lot of that time, just a slow crawl downwards with plateaus here and there. He is at stage currently at stage 5. He communicates fine, is relatively pleasant and still easy in many ways. However, every single thing he does or says drives me crazy. He gets me so angry and so sad and I can’t talk to him about it so I turn it inwards. It’s not healthy at all. I am a go getter and have always been a busy person but I am barely functioning at this point. I have all the help you can imagine, but nothing changes me.
As far as he goes, we have a slew of doctors; GP, Neurologist, and Geriatric Psychiatrist and NO ONE can help him with the behaviors he has been exhibiting which is sexting and trying to meet up with single women online. He is off the internet now and that is under control at the moment but I’m just waiting for what will be next. I am just so angry and so sad that I am dealing with someone completely different then who I married. And I am not going anywhere or abandoning him, I truly love the man, but I can’t get outside Of my own misery to deal with this like I should. He is still too smart and seems too with it to even get the help I need from the professionals. Our regular GP just says that he is not him anymore. I’m sure I’m mourning the loss slowly over time, but I cannot stand being stuck and trapped with these negative feelings that are anchoring me down. Why can’t I enjoy what I still have left?
Is there any advice for me? Am I the only one that buries these unhealthy feelings? I feel like I can’t even articulate well enough what I feel even though i am trying. Thanks for anything you can share, advice you can offer or even just for reading.
Comments
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so sorry. First important to know that dementia causes inappropriate sexual behavior. Tell his Geri Psyche about it. There are meds to control it. As the doctor said it’s not him it’s the disease. Yes you are mourning what you lost. You are no longer husband and wife. You are the nurse and he is the patient. It helped me think of my DH that way. Many of us have those feelings of being trapped. Your life is on hold while you care for him. You are angry at the disease, not at him. Have you spoken with a counselor about your feelings? Someone familiar with dementia? As his disease progresses you will need more physical and mental strength to face what comes next. Do you have respite help so you can get a break outside caring for him? Just a few hours per week really helps. Sending hugs.
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SDianeL, thank you for your response. I guess it’s good to know that others have the feelings of being trapped, not that I want that for anyone, it just normalizes me. We went to the Geri psych specifically for these issues and he told me there is nothing to really treat this behavior anyway. The neurologist sent us to the GeriP for this issue. Instead we are being sent through the channels, once again, of doing sleep study for apnea… blah blah blah so weeks later we will know if he has apnea still. He won’t wear the CPAP and he will still need meds for calming the urges. I do have a therapist who has been through a husband with similar things herself. She gets it and has offered to see me two times a week to talk and get it out. I am feeling like all I do is spend money and get nowhere. Spending an extra $300 a week besides the one appointment I have already to complain for 45 minutes is… expensive. Every time we get sent to a new doctor they are never within our plan so we are always paying out of pocket. I’m sorry for my rant and sounding so bitter, at least it cost much less than everything else I try to do to find relief. Thank you.🙏🏻
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you’re welcome. This disease sucks!! Anger at the terrible disease is understood. Someone posted about “anticipatory grief” that many of us caregivers go through. Maybe someone will remember who posted it and reply. It was very helpful for them.
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I’ll search for it. Thank you again.
Christy
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Do you have a hobby you like to do that you can still do? What saw me through the most difficult behaviors was swimming, kayaking, and hiking. We did these things together. I could keep an eye on him from afar, but not too far. Such as, I could see him walking on a treadmill, while I swam laps with a membership to a local resort’s fitness and pool. When we kayaked, we each had a lifetime kayak that a hundred pound dog could climb on and it would not sink. The space between us (he wore a life jacket) in the rivers and bays we kayaked in afforded me necessary mental, physical, and spiritual health, same with hiking. My husband loves the out of doors and went for long daily walks where I could track him on his iPhone, and as he advanced in his disease, I could rescue him when he had gone off route or was gone too long,
In his middle stages, I found a local adult day care that took about six weeks to get him acclimated. He had anosognosia, so I told him the adult day care was a senior social group that would be fun for both of us to join. The director was wonderful and since he liked to sing, she asked if he’d be willing to sing and entertain the seniors. He happily complied. I volunteered to work in the kitchen and slowly it became our routine a few days per week. After six weeks, I was able to drop him off with an excuse that, sadly, because of an appt, I couldn’t attend the center that day, but he was still needed to sing. I’ll not forget the feeling of reprieve that first day, as I rolled down all the car windows and just breathed.
I felt trapped like you, honestly who of us doesn’t? I, too, was committed to our marriage vows of, “in sickness and in health”. The disease is a crazy, menial, thief. Don’t lose yourself to it! At times you’ll wonder if you’re the one who’s afflicted. Alzheimer’s stands reason on its head, and humans are expected to be reasonable. You/we wouldn’t have married an unreasonable man, but here you/we are.
There is a line that we caregivers all step over. It is the line of deception, when we tell fibs, white lies, even blatant ones, because we learn it easier to respect (fear?) and enter their world. So, we stop straightening up and correcting our loved one’s errors in thinking and judgement. We let them go. Literally. This takes a huge toll on our spirits, so again, it’s absolutely necessary you start working out to remain or return to good mental and physical condition.
Therapy is great, but brainstorm and find something for yourself so that you can stay engaged in the real world in a healthy way. Sometimes that meant screaming in the closed car when I was alone. Alright, maybe not always healthy, but the stress has to be let out, less it turn inward and take both your husband and you.Can you find a local support group to meet in person? That can be as helpful as a therapist and much less costly. I saw both at times!
You are strong, I can tell via your post. Ranting here is a wonderful, too! Rant away. People here understand; You’re not alone!
Wishing you enough peace and lots of wellness as you care for your husband. There is some humor and glimpses of joy when you make space for you, too. Ying/yang.7 -
Hi Christy- unfortunately I relate all too well to what you’re feeling. You can intellectualize til the cows come home about how this is the disease and not your DH. However, living with and taking care of the needs of a loved one who frequently is no longer who they used to be and at times unlikable ; turning yourself inside out trying to rise to the occasion which means putting yourself aside 36/7 (36 hour day) - well to say it tests the human limits is a supreme understatement. I use old photos and music we have shared and loved together over 41 years to remind myself of who she was and who we were together. It helps me to remember why we have been together so many years. It revitalizes my love in the midst of this madness. I also get out to walk by myself as often as possible, though sometimes there’s a price to pay for that when I get home. Anosognosia has made it difficult to bring in outside help, though I haven’t given up on that. Keep breathing, meditate, talk to your friends here and elsewhere, keep going to therapy! Sending support and understanding!
Karen
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4MY… 'Every single thing he says or does drives me crazy.' 'gets me so angry & sad…so I turn it inwards.' Wow. Do I ever relate to that. Two years ago, I got incessant weeping spells, but am much better now. I hope you can find ways to cope. Here's my story.
My DH has fluent ppa (aphasia), lots of words, but no intelligible communication and less and less rationality. Today, at 8:30am, he went out on the kitchen porch and hollered/sang a word salad for what seemed like an interminable time, probably just a quarter hour, as I tried to persuade him to come in the house. The neighbors all know that he has dementia, but it was still embarrassing. I know it's not my fault, but I try to keep him from bothering others. I took him out for his daily walk early, to get him off the porch. Yesterday we had a lovely picnic and walk overlooking the sound, and it was all so normal, until we came home and before I could get him to the bathroom, he peed off the front porch. The day before that, he poured a glass of water over my laptop keyboard. Amazingly, I reached it and dried it in time and it still works.
Now, in our fourth year, I have become pretty much able to avoid freaking out about his messy, objectionable, mildly dangerous, and totally bizarre behaviors. What really changed it all for me was when I realized that when I showed any irritation or even sadness, it amplified in his brain, and he became agitated, angry, even scary. My survival seems to depend on my being able to remember that he is not doing these things to annoy me, but because he is ill. So I project positive cheerfulness, almost constantly. I got a prescription for him to reduce agitation, but have not needed to use it. Instead, when he exhibits some new and bizarre behavior, I take a deep breath, calm myself down. I make up a song about it, dance a little, smile at him, and say to myself 'I'm glad I still have him.' It mostly works, since he has a short memory, and a selective one. He forgets everything, except the immediate emotional frame.
I had to relax about physical contact too. We hug and pat each other and hold hands, but never anything more. It's turned into sort of a kid/parent expression of affection.
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I’m pretty much in the same place as you. It’s lonely and frustrating.
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I can't thank you all enough for normalising my DH's behaviour. Its so very hard listening to and watching the young man you married (45 years ago) turn into someone different. Aphasia complicates the relationship even more, our daughter, who is so very loving, has quietly commented why couldn't he have cancer, something that is normal. It sounds hard and sad but she is hurting too and she is so very caring. Retirement was never meant to be like this for me or my darling DM, friends are off on cruises, shopping, dinners even; DM's dinner often ends up on the floor which our new little puppy loves!
PS our puppy now 3 months old, a schnoodle, is a bundle of fun and a great distraction. He is a ray of sunshine every morning, so non judgemental and requires sooo much attention, but we now walk him along the beach walk and then it's my turn to chat to all the other puppy walkers. Socialising again I can't believe it. I'm still so exhausted by the constant demands and changes but it's so good to hear I am not alone. My heart goes out to everyone in this situation that non of us wanted.
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it occurs to me that you do need respite, be it a day program, in home caregiver, or even memory care. Stage 5 is not too early to think about it.
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@4MY❤️
I am so sorry you are dealing with all of this. First, kudos to you on shutting down internet access. I know first hand how hard that is to do.
Please stop judging yourself for what you feel. You feel what you feel. Full stop. There aren't good feelings or bad feelings or feelings that are "normal". Please don't assume others are coping better than you. They may have an easier PWD, more support, not care or just present a more serene facade despite their inner struggles.
You sound a bit detached from your DH. And, to my ear that makes perfect sense. When my dad was going through dementia, a dear friend's mom, Oma, was as well. Oma had been a wonderful mom, grandmother, family matriarch and friend. She was wise and sweet with a side of snarkiness reserved for those she deemed trustworthy. Even with dementia, she remained generally good natured and cooperative for which my friend was grateful especially when I shared tales of dad's shenanigans. What pained her, though, was that she felt detached from the woman living with her. She summed it up saying "The woman I care for is a nice enough little old lady, but she's not Oma".
Your husband, in his dementia, has become someone you probably would have avoided. This is tragic. I watched my own mom wrestle with similar feelings given my dad's behaviors. Dad wasn't on the internet, but he was just creepy talking about sexual topics including some self-reported exploits (pretty sure these were conflated) that would land him in jail. We mostly kept his world very small, limiting his outings to medical appointments for the duration.
Dad saw a geripsych and it was worth every penny. Despite that, the inappropriate sexual talk was not something meds were able to entirely extinguish. At the time this started, dad was undergoing ADT (prostate cancer) and had zero circulating testosterone and was taking a fairly high dose of Prozac. Adding Seroquel did tamp it down considerably in stages 5 and 6. By late stage 6, this behavior did seem to fade.
I'm glad you're investing in therapy for yourself. Please make sure it's a good fit. My mom's psychiatrist referred her to a therapist for talk therapy and it turned out to be more of a vent session than support and strategies to cope and protect her well-being. TBH, she got more bang from the psych and her in-person ALZ support group. My niece worked on unresolved issues with a therapist for 10 years without getting anywhere until she moved and tied up with a psychologist doing DBT. After a dozen sessions with him, she was in a better place. Medication helped them both as well.
HB4 -
Re: anticipatory and ambiguous grief:
"Loving Someone who has Dementia" by Pauline Boss helped me immensely. Others here have also recommended this book.
This website also has good information:
Ours is such a difficult grief. It is not acknowledged by society because our loved one is still alive, but it is grief all the same. A seemingly never-ending sense of alienation, isolation, loss, sadness, anger and despair. There are no rituals and outpouring of support as happens with a physical death. We are left to our own devices. For me it is death by a thousand cuts.
(DH: Late Stage 7 ALZ, CHF, Stroke)
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I am so sorry and I empathize so dang much. I'm so sad so much, but have had moments of respite that I think have saved me from going even deeper into despair. I'm with M1. Some time away from your DH could be helpful to you. I know it was for me when I was able to send my DW away for an entire 4 days with her sister to go visit the rest of her family. I hadn't realized how much I was going to enjoy having the house to myself for 4 days. After those 4 days, I realized that I'd nearly forgotten that we used to do things independently that gave us both a little time alone at home occasionally. Her out to dinner with a friend, even, gave me a couple of hours alone in my own home. Damn, I still miss that.
I came away from those 4 days a changed person. Like, remarkably changed. I stopped having so much of the internalized anger about my DW's behaviors. They come back some when it's been a long stretch of no break, but then I know to work hard at guilting her sister to come visit for a few days. I've gotten really good at that too. Lol.
And, if I had a neurologist trying to make my DW do a sleep study in Stage 5, that doctor would get an earful from me about how stupid that suggestion is for a person with dementia. Who gives a damn if my DW has sleep apnea at this point?
Anyway. Please hang in there. Please give yourself a break from the hard messages you're sending yourself. And please think about a way to give yourself some respite!
xoxo
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I also can relate am now in the tenth year of this horrible journey. We go to senior center for lunch and the couples are doing day trips, cruises etc numerous times a year and they are same age group as my husband and I. Instead the whole decade of our sixties was watching/having Alzheimer progress. We feel robbed of all the plans we imagined in the early part of retirement. I feel bad for you and the rest of us in this. Facing what is only going to get worse and not knowing how slow or fast. It is all quite taxing the day to day of it.
We can all just try our best to get through it all. I keep all my thoughts to myself except here we can vent with others who may understand. It's great you let loose on how you feel and see many can relate. Wishing you well!
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There are so many wonderful people on this forum who can so eloquently describe how we’re all feeling - the sadness, frustration, anger, guilt, etc. It’s so validating. My DH and I always used to say that part of the reason we had a successful marriage was that we were not only in love, but we liked each other, we were best fiends. Now that this disease is in the picture, the love is still there but it’s sometimes very hard to still have the “like” part. These are normal feelings but hard to feel that and not feel guilty.
This was a pretty good short video from Careblazers about unspoken thoughts (that we CAN speak of in this forum!)
https://youtu.be/_SN6vNGZdpU?si=fs_Yj6uoawNqhXbI
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I am so grateful for these posts. I see my thoughts/feelings in so many of them and I feel less broken when I do.
My DH with ALZ has mild -moderate cognitive impairment. I write In a journal daily expressing my feelings as I vent and try to cope with this new reality. I refer to my DH in two ways : DH and Not DH.
The Not DH is the one whose behaviors are challenging, anxiety producing, stressful, filling me with self doubt and sadness. The DH is still my best friend, the love of my life and the best person I have ever known.
I hope daily that Not DH does not erase all traces of DH because I am not sure I am strong enough to stay the course if DH totally disappears.
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Don’t despair, he may reemerge. My partner is now mostly bed bound and sleeping most of the time, but sweet and gentle. Not the raging maniac who threatened me with a knife several years back. I refuse to let this illness, awful as it is, to define her life or ruin my memories of what we were.
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thank you
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thank you
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Thank you to ALL of you for your feedback, suggestions and insight. I have learned so much from your responses and I really appreciate them! I may be back here often for more support, you are all amazing and I truly feel less alone in this. Christy
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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