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Post by catlover on Jul 24, 2021 13:42:49 GMT -5
As part of my wife's ongoing advocacy activities we had a video interview scheduled for yesterday (had to be postponed because of crappy wi-fi here at the trailer) we were sent a list of questions that would be addressed during the interview so as to do some prep.
I dutifully did my prep work and then sent a copy of what I had written to the wife. My answers below. She seemed gobsmacked that the "loss of intimacy" was such a big thing" to me. (FFS, what the fuck have I been trying to tell you all this time?)
Theme 5 – Caring for someone with ATTR-CM
Can you describe your journey in the lead up to your family member receiving a diagnosis of ATTR-CM?
Confusion and frustration I think sums it up. Subtle changes at first; inability to do things which were previously easy, slow weight loss, disinterest in intimacy, more frequent ‘bathroom accidents’, rapidly fatigued. Unexplained pain. Then, the day comes when you hear the diagnosis, then the shock and disbelief.
How would you describe the physical and emotional impact of caring for a person with ATTR-CM?
Physical. I am fortunate in that I am a fairly strong, physically, person so I am able to handle the literal ‘heavy lifting’ that needs done around the home etc I find it is far easier for me to run errands alone, gives me alone time and also it is a ,to less frustrating, especially when Anne is tired, which is often. Emotional impact is far harder to deal with, the person you love is literally wasting away before your eyes and there is NOTHING you can do about it. Realizing the person you love will never be the same again, this IS the new normal. As previously mentioned, sexual dysfunction. If you, like me, thrive on intimacy and physical affection, cessation of ‘bedroom activities,’ intimacy and physical affection leads to feelings of resentment, frustration and anger. It is really hard to accept that your marriage has changed to a patient-caregiver relationship as opposed to a romantic one. A lot of things we used to do together are now curtailed: Loss of ability to walk very far Needing to plan things around bathroom availability To a degree your own mobility is limited
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Post by northstarmom on Jul 24, 2021 17:46:48 GMT -5
What a painfully difficult situation to be in.
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Post by mirrororchid on Jul 30, 2021 5:46:41 GMT -5
... She seemed gobsmacked that the "loss of intimacy" was such a big thing" to me. (FFS, what the fuck have I been trying to tell you all this time?) Theme 5 – Caring for someone with ATTR-CM...cessation of ‘bedroom activities,’ intimacy and physical affection leads to feelings of resentment, frustration and anger. One thing my wife does is internalize my frustration with her problems, rather than her. (Depression, obesity) It helped when I explained that when I'm dealing with many things at a time, I am tight-lipped and doing things quickly and noisily to get them off my list so I don't have so much to remember that I worry about forgetting some of it. It comes across as anger. It got abit better after that. Perhaps you do a very good (maybe too good?) job of hiding it in order to be pleasant. You've seemed to imply that it's more a situation of "can't" rather than "won't". In both cases, similar to "why chasing", is there a point at conveying negative emotions the refuser isn't interested in fixing? Early on and given subjective need, some refused spouses (not saying you're one of them) need to convey it bluntly and be ready to back it up (aka "The Talk") (Baza's legal advice always in play before pulling triggers.)
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Post by catlover on Aug 8, 2021 7:40:24 GMT -5
"is there a point at conveying negative emotions the refuser isn't interested in fixing?"
I am tired of playing the part of the loving, devoted husband, with zero intimacy of any sort The interview is to try and put the message across to caregivers what to expect, I saw no point in sugar-coating things at all. I want her to know how I feel, maybe that will help HER understand ME a bit better too.
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Post by theexplorer on Aug 12, 2021 11:49:21 GMT -5
I can understand your situation, at least to a degree, Catlover. My wife has had some health issues that affected her mobility and ability to function for an extended period of time. Fortunately, she has improved, but she still has many limitations. With her health issues, she could take a turn for the worse at any time.
Adjusting to the role of a caregiver can be DIFFICULT!! It was a tremendous struggle for me!! It took far to long and was vastly more difficult than anticipated! I finally accepted that the wife I used to know is gone! She ain't going to return. There was some grieving the loss, anger, etc. along the path to acceptance. I don't know how you will handle this experience, but it will not be easy!!
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Post by theexplorer on Aug 17, 2021 17:39:19 GMT -5
I was interrupted during the previous post. To continue:
It is real important to take care of yourself as well as your wife. This was something that I failed to realize early on. Burnout is a real threat to a care giver. I finally recognized that getting my own needs met was just as important as taking care of my wife.
Meeting the need for affection can be difficult. Some of the creative people on this site have made excellent suggestions in the past. Here are a few ideas that I recall:
1. Adopting a loving pet. 2. Spending time with family such as your children or grandchildren. 3. Confiding in a close friend. 4. Scheduling an appointment with a massage therapist. 5. Finding a cuddle partner or going to a cuddle party if one is available in your area.
Unfortunately, none of the previous options will be the same as having a loving, intimate relationship with your wife. These options will not be as good, but some affection may be better than no affection.
Perhaps it would help for you to consider what your wife is thinking about. She is probably focused on her own problems. Facing serious health issues may lead her to not consider how the people around her are affected by her problems. This does not mean she doesn't care, it just means she may not have space in her mind for what others are experiencing currently. She may be overwhelmed contemplating her own future!
There are other options for finding affection. These would likely be much more damaging to your marriage if your wife discovers them on her own. On the other hand, if you discuss these options in advance, your wife may allow you to change the terms your marriage. For example:
1. Scheduling an appointment with a sex worker. Your wife may view this as a consumer transaction. In other words, you are paying to have your needs met. You are not falling in love with someone else, so your wife may not view this as a threat to your marriage. In some jurisdictions this is illegal, so look into that to avoid problems. Where I live, prostitution is illegal, but escorts are legal.
Paying for sex can become expensive. It may be that your wife would allow you to have sex with someone she does NOT view as a threat to your marriage. If you do some research, you may discover some possibilities. Just a few ideas: Someone considerably younger or older than yourself. Someone she trusts implicitly. Someone who is married and will never divorce. Someone who is disabled with physical or perhaps mental problems. Someone who is an SSBBW. 2. Online affairs. 3. Emotional affairs. 4. Physical affairs.
I don't have enough knowledge to comment on these three options. I've been told that emotional affairs are the most likely to be discovered though.
5. Some of the new sex dolls are quite realistic. These probably would not work for most guys, but they are an option.
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Post by catlover on Aug 18, 2021 8:59:34 GMT -5
"Adjusting to the role of a caregiver can be DIFFICULT!! It was a tremendous struggle for me!! It took far to long and was vastly more difficult than anticipated! I finally accepted that the wife I used to know is gone! She ain't going to return. There was some grieving the loss, anger, etc. along the path to acceptance. I don't know how you will handle this experience, but it will not be easy!!"
This is where I am, still struggling to accept this, some days its easy, other days its hellish.
Unfortunately, none of the options available replace a 'normal' loving and sexual relationship. It's hard and no pun intended.
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Post by catlover on Aug 18, 2021 9:27:48 GMT -5
Then there are the times that make you feel like a selfish prick. On Monday I decided to get on with building a new and improved firepit at the trailer using the old 20" truck rim supplied by the campground. I bought 24 specially designed, slightly pie shaped stones to surround the rim. After carefully laying the first row of 8 around the rim I removed it and carried on building. Came time to insert the rim back into the circle and I found there were two tabs welded onto the bottom of the rim which made it not go in. "No problem," says I to myself, I will just pound those two tabs with the back of a (heavy) hatchet. The first tab I got out the way after much sweating, started on the second one and wifey calls out, "Please be careful" and not two minutes later the hatchet glanced off the steel and bounced off, you guessed it, just above my foot. Instantly there was blood all over the place I called out to my wife to please bring some paper towels :-) Cut a long story short, wifey immediately 'sprang into action', hosed off the mess (at my request) to see what was going on. I had inflicted a lovely gash on my leg just above the ankle, definitely not fixable with a band-aid. She was all over it, getting a LARGE bandaid to cover it and no arguments, you're going to the ER. waited in the car for me till about 12pmand so on. The point I am making in my usual convoluted fashion is that it's very obvious she cares A LOT for me and I feel like shit for thinking bad things. I don't know if I am making any sense though bt as I said it made me feel like a heel.
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Post by northstarmom on Aug 18, 2021 10:40:47 GMT -5
Someone can care a lot for you but still not be a good fit as your spouse.
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Post by baza on Aug 18, 2021 18:49:42 GMT -5
Sorry to hear of your altercation with the hatchet Brother catlover . Last week my elderly neighbour had a fall in the backyard. I heard her yell out and I hurried over, looked like a dislocated shoulder. Bundled her into the car and drove her around to the hospital (not far fortunately) and waited around for her family to turn up. Seemed to me the compassionate thing to do - and I figure that anyone in a similar situation would help. Hope you are healing up Brother catlover .
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Post by catlover on Aug 18, 2021 21:11:20 GMT -5
Sorry to hear of your altercation with the hatchet Brother catlover . Last week my elderly neighbour had a fall in the backyard. I heard her yell out and I hurried over, looked like a dislocated shoulder. Bundled her into the car and drove her around to the hospital (not far fortunately) and waited around for her family to turn up. Seemed to me the compassionate thing to do - and I figure that anyone in a similar situation would help. Hope you are healing up Brother catlover . Thanks, 4 stitches and a dented ego 🤣. Lesson learnt, use the right tool for the job! (Got the job finished before heading off to the ER 😆
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Post by jerri on Aug 19, 2021 1:53:13 GMT -5
Not that you do but caregivers fantasize about death. It's just a fantasy and quite normal. Not that this is you but my friend was talking about fantasies that bring guilt tonight. Not a bad idea to look up "caregiver's fantasy death" and just look at all the articles that you can relate to.
Her shock of your writing about intimacy/bed activities... It's interesting how the refuser will just think sex is no big deal and since it is not a big deal because they have no drive/dead crotch syndrome- they just don't get why we could be so upset for trying to clean up the genital spider webs. They think that our pain is a gross exaggeration and since they can go without easily we should be just like them.
I think it literally has to be pointed out to them in bite sized chunks about the differences between drives. And even still- he didn't understand the pain endured. Even if I got angry or distant he still didn't get it and rolled over and slept soundly within minutes. Huge denial and disconnect. I wrote to my husband so he would have it in front of him and was still in denial and thought we were not sexless because we had months ago, which turned into years. When he invalidated me during talks I knew he really didn't want to understand. It just wouldn't be to his advantage to have knowledge of the impact. In one ear and out the other. I was done with all the kind, unkept promises. He didn't want compromise.
Have her read this line, put away the paper and I bet she can't recite 50% not because she does not care or love you, she just can't handle it. I wonder if their psyche can handle it. My therapist said there was a huge block and she didn't know what it was.
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Post by theexplorer on Aug 30, 2021 11:20:38 GMT -5
Jerri, thanks for posting those excellent thoughts.
Catlover, It sounds like our wives could be sisters! Seriously, my wife is excellent when dealing with medical emergencies and problems. She has an interest in medical science, so she has learned a great deal about the subject.
Like you, there have been times when I've felt awful even considering leaving her or outsourcing. She cares about me and loves me in her own way. Unfortunately, her own way does not prioritize physical affection, intimacy and sex.
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