How do you deal with caring for a person you basically no longer love or barely like esp when everyone else assumes you do. How do you cope?

Panda,

The judgement of others is a terrible thing, especially from those who have not traveled your journey.

I do not have any first hand experience with FLD, but I do have ample experience learned later in life about setting boundaries, and making my needs a priority.

I have read through your posts in this thread and it appears that your husband is brought to your home 2 times a week by a transportation service. He is there for 3.5 hours, then is returned to his home. On Saturdays you drive to see him and have lunch together. So you are spending a considerable amount of 3 days a week with a man who can be abusive and does become violent. You are so fearful of the potential for violence that you have to have your son at the house when he visits.

You fear driving him anywhere because of the risk of him becoming violent in the car.

If I have gathered this information correctly you are spending time with him almost every other day. I imagine you are in a constant state of alert and perhaps anxiety. I know I am when faced with a volatile family member. This will take a toll on your health and well being.

I am glad the doctor has told you to stop taking his calls. If he starts to call others complaining and they contact you, there always is at least one busy body who tries to blame and shame, just tell them you are are following the doctor's orders.

Is there any way you can reduce the home visits? Actually let me take one step back. What was the reasoning for him to have home visits in the first place? In North America, it is generally recommended that once someone with dementia is in a facility, if their dementia is getting challenging to manage, that they stay in the facility. Of course Covid, has put a spanner in the works this past year.

Were the home visits set up for the two of you to have a nice visit? Were they set up to give him an outing? Were they set up so your son could visit Dad? Were they set up because he wanted to sit in his chair and rule the roost?

It sounds like now, those visits are a hardship for you. You are scared when he is there. You need to be safe in your home should over ride all other considerations. Your safety, mental and physical is paramount.

Now your son needs to step up and help you. He is at your house during visits because his Dad can be violent, yet expects you to do more? This makes no sense at all, unless he picked up on Dad's abuse of you over the years and feels you have to stay in that role.

In my family, my brother picked up on our Dad's nasty abusive ways with me and tends to treat me the same way Dad does. It is frustrating to have two people denigrating my intelligence and abilities and giving no credence to anything I suggest.

Panda, we can make suggestions until the cows come home, but we are not living your life.

You have said he no longer has a cell phone, but can use a phone in the facility to call you. You said when the staff try to limit his access to the phone he acts up with them. My question is, does the facility have a different office number? If yes, can you then block the number he is calling from? If there is an emergency, you can accept calls from the main number.

I had to block an abusive family members calls on my cell phone, that way I never see the call and they cannot leave a message. Because for me even knowing there is a message can be triggering.

I am sure that is OZ there is a means to block numbers on your home phone too. I have done that too.

Now there are those who may say it is extreme, but my sanity is worth it. "They" are not living in my situation.

The visits; how many do you want to have and how frequently? 3 times a week appears to be too much. What about once a week on Saturday, no more home visits? Or once a month, once a quarter, never again?

The marriage; do you want to stay married? Do you want to separate and live your own life, without a divorce? People will judge you no matter what.

I totally understand when you have such a relationship. Almost like you would have rather divorced long ago, but due to honoring your marriage vows or maybe his control, you didn't. Can you now, would that help? Unfortunately, you would have to communicate with his family as they will have to take over all his care, become the DPOAs for medical and financial decisions, and the Will will need to be changed. Can you continue to live without any of his subsidence that is suppose to be left to you after he passes? You DO have the ORIGINAL Will, correct? Say yes! All his personal items should be turned over to his family. Don't let them, or him, bully you into guilt. Keep your head up and be honest by telling them, and him, all the issues of your marriage from the start. They might not have any idea how hard it's been on you, and why you choose to stay in the marriage. If my husband dies first, I don't intend to be responsible for any of his family members (one brother with mobility issues) in spite of being the one that lives closest to his place. I doubt I will even stay in touch with them. Why?

I feel the same way. This is a great discussion. Thank you to all who posted here. I am learning to say “no” as some of you suggested. It’s hard not to feel guilty but when I ask myself what I would tell a friend to do, it held me see which of his requests are unreasonable.

I'm in a little bit of a different situation because it is my mother-in-law, not my husband, but feelings of dislike are the same. I live with her and co-care for her with my husband, her son. But since he works full time and I don't, I am the primary caretaker. I loathe it! I don't like her selfish, controlling, manipulative ways. I take care of her needs, prepare her meals, and engage in small talk. I pretend I care about her needs, wants, complaints, questions, concerns, stories, requests, random thoughts, etc. etc. I don't! It's a real struggle and I have to cope with my anger and resentment, as well as guilt. I talk to two therapists. What I am trying to own is my feelings. They don't come from a bad place. They come from me wanting to care for myself - my needs and wants. It comes from me wanting to be free and happy. Of my desire to live a peaceful and balanced life. There is nothing wrong with that. Be honest and really dig deep to identify the truth and where your feelings are really coming from. Write things down if you need to. Distinguish between truths and untruths. Own your truths and reject false notions. As for family guilt trips, stand strong. They haven't walked in your shoes and don't understand. Do what feels good to you. Either try to calmly explain and defend yourself, or just be firm announcing what's best for you, and that's that! I guess I am encouraging you to accept and own your truth. It takes courage to be honest with yourself. If you want any hope for a life and happiness, make yourself your top priority of care. Then, and only then, can you decide what you want to give to others.

I am a caregiver, I have always loved helping and caring for people who actually appreciate me. Even when I am off shift. A girl I was helping in the care company decided to play on her phone rather than pay attention to what I was showing her how to do. Bc of that she thought I was doing something wrong when I was just doing what the client had asked. This girl told lies to our manager, The manager Fired me with out even contacting the client about anything. My client was so upset and hurt bc the girl I was helping (she was new) is lazy, she fired that girl. all 3 of my clients have said she was lazy and would sit on her phone and not get anything done but out in her work notes that she completed all work tasks that's in the clients Care plan. The clients are supposed to have the best steady care. They were all stuck with having different caregivers constantly. I was there only stable caregiver. I go out on a lemb for them. Even after I have been fired, my one client hadn't had a caregiver. So I went over and got stuff done and went to the store for her. She did not have any quarters so I brought some of her laundry for me to do at laundry mat,so I brought them to my home to do for her. I am more appreciated and get treated with more respect from my clients more than I do by the people who claims to "love me".
I figured one day my man would actually care about the passion I put into my jobs when I work. I also been getting up and taking our son to school and than I check in with my clients to see 8f they have a caregiver coming to there place and if not I try to do what they need if it's in a reasonable time frame. Than I come home and clean my house, Pick up my son from school and would hope my man would want to spend time with me, but he would rather run off with friends and family and claim he did not have fun but yet he'd be drunk and claim not to be drunk, He time he makes a promise it gets broken..He finds every inch he can to nitpick and down grade me. Day in and day out I crave for him to hold and love on me. I get told I am not worth it! Today is supposed to be family day. I thought he would wake up and try to love on me. But instead I got hated on and shoved away. I am sure he will either sleep all day or go fun off and get drunk again. He does not even invite me to go on a drive, or go do anything. I have been heartbroken over so many things. I love doing for him and I out my heart into him and talking to him about things gets used against me by him. It's over whelming trying to work and care for everything all at once.

That's tough! I do not have the same experience but could kind of imagine it after what happened with my parents. They were always secretive with love gestures but did love each other a lot, as I came to learn over the years. When dad and mom both became diagnosed with alzhiemer's I did not know exactly what would happen but I did some research on it. I had to step in once things became weird, like weird behavior and even paranoid accusations and what can only be described as violent behavior from a person who was normally never violent. Without getting into details I honestly think my parents just didn't feel all that great together anymore and love life was nonexistant. I feel that although there were many factors at play the fact that mom didn't really want to see dad much once he needed more care and she herself was needing care, it affected him a lot and me too. It kind of changed everything in my life. I always will have it in my mind that the scenario could replay with my husband and me though we have already grown apart due to mom living with us. I am ok with it. It's difficult sometimes. I feel that you may even need to have times that you go and do something for yourself. It sounds like you don't get much of that. People have also advised me to take care of myself or else I will be unable to care for my family. That's about all the advice I could try to give, but you have to make the decision.

The key is if he still knows who you are. If so, you can stand a visit once a week. Too late to do otherwise

As I tried my best to care at home for my husband( my goal was to make it through until COVID issues abated and it would be safer to have in home aide and get him to do adult day programs), the phrase that resonated with me was...I don't have a husband, I have a patient. It seemed to help when explaining to others and it helped my head....and maybe my heart....in distancing from my increasing resentment about several decades of a less-than-satisfying marriage. It also helped me realize that I was in over my head as caregiver and one of us was going to get hurt. He is now adjusting slowly to an adult family home and I manage his finances and health team without the bargaining stress. Your situation is much more difficult, but if that phrase helps you explain it(to your son), maybe he can figure out how to see his dad without more stress to you. Show your son the duties you currently have as poa, etc. It might make it a smoother transition if your son decided he can 'take over'...if he is the contingent poa, etc you might be able to decline those duties for him to step in. The good news is that you are 'retired' from the caregiver role and probably have ways to retire from the other roles...if you were a paid poa, etc would you be allowing these visits to your home?
I am so sorry for your ongoing issues. By reaching out on this site, you helped me. Such a supportive community. Hope my input helps you, like the responses here have helped me. Put your needs first.

I have not read any responses, so forgive me if I am addressing anything that has already been said.

Panda, you matter as much as anyone in this situation, his family, your family, him, all of you matter.

You have every right to be done with the abuse. It is never okay, no matter what anyone tells you. You have the right to remove yourself from any and all abuse.

You can tell anyone that is being abusive that their behavior is abusive and unacceptable and that you will not be tolerating it any longer. Then hang up or walk away. People treat us how we let them. They are all conditioned to use you as their dumping ground and that needs to stop.

Your son needs to see his dad more if he thinks he needs more visits. Tell him that I say, "Your mom has gone above and beyond to ensure that your dad has care and is safe, she doesn't need or deserve to be treated like she has done something wrong by caring about her own wellbeing. You need to love and support her in her decisions about her life or you need to just mind your own business. If you and others don't stop treating her like she is less important than everyone else, she could very well become a statistic and that would be on all of you that treat her poorly and think that you can abuse her."

Take care of you, you have ensured that your husband is taken care of and anyone that doesn't like your choices can go pound sand.

Maybe you can deal emotionally by keeping up with necessary legal and financial matters for his care but otherwise thinking of him as a "client,"you were hired to help. This may be your "job," but don't let it be your whole life

I can tell you no one has any idea what the caregivers go thru until they walk in our shoes and then it is a different story. You must take care of yourself and stop being verbally abused by everyone. They need to step up and do their share so you can still have some sort of normalcy and peace of mind. As long as he is taken care of you are doing your part. What if you get sick then see who steps up!

There is a sense of honour when you are a partner however. How long were you married for? And has he looked after you financially all this time and now its your turn to reciprocate? And will you be the recipient of his financial estate I suppose after he passes rather than his children?

You stepped up to the plate, happy or not. You get all kinds of comments from those who aren't in the trenches. They can offer all kinds of things for you to do, all the while they fail to show up and help. Continue to do what you can as POA and Health Advocate.

You can control who you talk to on the phone. Limit the number of times you answer to how much stress you can take at the moment. Call the facility and make sure there is a list of phone numbers that he can call and be specific on the list as to who it is - Brother, Sam Jones, # - Son, Timmy Jones, # - etc. Don't let son guilt you. Explain it's his father and he needs to spend some time on the phone talking with dad. If any of the relatives reach out to you, tell them the same and that you do talk with him, perhaps he doesn't remember since that is the sad part about the illness. If relatives call to get you more involved in the phone calls, remind them all that he belongs to everyone and you are doing your part. Don't argue with them. Any complaints from them about repeated calls during the day, just agree - Yep, I'm dealing with the same thing too. Gotta go, there's someone at the door.

He's not in your house, so you can help from a distance as long as you choose to do so. Nothing wrong with him having other people's phone numbers so he can talk to them as well.

Substitute your husband with my mother and it's the same, so you're not alone in feeling that way. My heart goes out to you and I applaud you for doing all you do. Sending your strength and best wishes.

You've gotten a lot of good answers. I just wanted to commiserate with you about relatives/friends of the FTD patient being adamant about their view that the patient is fine, that the patient is able to go home, handle their own finances, etc. etc.

IMO it's because FTD is classified as dementia, but it's got almost none of the symptoms of Alzheimer's Disease which most people equate with dementia. My FIL has been diagnosed with FTD. He has a strong personality and is still adamant he can take care of himself even though by now he needs help with all his ADL's including taking a shower and getting dressed in the morning. And he will call his friends that will still take his calls and tell them that he should be able to live on his own, and then those friends will call my husband and berate him. It's just insane.

I just don't know how all these people who have no involvement in the intimate details of a family's situation will feel free to call and give someone an earful! So I commiserate. We just had to stop caring about others' opinions. It was difficult, and we certainly aren't perfect at it and we're often still hurt by people's comments. I guess a better way to say it is that we don't change what we're doing due to anyone's opinions.

I curse alot, under my breath, and remind myself this won't go on forever, and that I will no doubt feel bad when the person is gone. I have friends, too many, who had better relationships with their parents who are now gone. They, in a way, envy me, and remind me of how much I will miss them when they are gone. I have moments when I think , PLease give me a chance to see LOL, One day at a time, that's the best we can do....

Panda: You do not need to and should not buy into any acrimonious tones from his family and some of your's. Prayers sent.

Panda, it sound like you are willing to keep making changes as you need. Eg changing home visits to a different location, having your son present for backup, moving the time to where his behaviour is better, not driving him yourself due to safety concerns.

Many people keep doing the same thing that isn't working but expect change - so well done for making changes. Keep going this way. Like a WHS risk review, keep re-evaluating. Anything dangerous : if likely or even or rare, but the consequence would be serious - that high risk activity needs to be illiminated.

I have 2 relatives I will not drive anywhere. One is impulsive & I do not trust not to grab things (& cannot fit in the back with walking aide). The other plays lump of lead & wants lifting in/out of the car (for me, not others).

For safety, some people will need to ride in the back seat, with childlocks on the doors & a carer beside them.

Do not put yourself or your son at risk driving. ***ask BarbBrooklyn about her car story***.

I have developed pointed answers that make me laugh when people refer to me as a devoted wife. My husband is stage 4 Parkinson’s, living at home. I have caregivers two hours a day, six days a week. And, I have house cleaners every two weeks. It costs me about $16,000 a year - and worth every penny - as long as I can pay the bills. I use independent caregivers rather than an agency because the caregiver’s are more flexible in what they can do and it’s less expensive - no third party is making a profit.

Now for my humor! “I am the owner and full-time employee of a five-star assisted living for one! I have two part-time employees and a cleaning service.” This makes me smile to myself - it states that I am in charge and others follow my lead.

Second humor which I just developed and I laughed out loud. First, you need to picture me. I am 76 with a bad back and walk bent over using a walker! I am not a pretty picture. Here is the story. I took my stage 4 Parkinson’s husband to Walgreen’s for a COVID vaccination. I was struggling with keeping him on task, sitting when he needed to be sitting, moving in the correct direction, staying six feet away from others, doing paperwork, etc. I was stressed and exhausted. As we were leaving, an elderly gentleman says to me, “you are a committed, loving wife. It’s a beauty to see.” For whatever reason, I was greatly offended. I do what I do very well, out of duty, not love. So I replied, oh! I’m just his ‘eye candy’ and walked away laughing. It still makes me laugh to call myself ‘eye candy’ in the midst of such chaos and exhaustion. I also take a small dose of anti-anxiety medication prescribed by my doctor.

Panda, your post could have been written by me. I have also been in an unhappy, unfullfilling loveless marriage for over 40 years. I was stupid to stay married. My husband has alzheimers which just makes his nastiness even worse. I’m currently in the process if obtaining guardianship & conservatorship, its taking much longer than I thought it would. My kids arent a lot of help to me & I’m finally getting some adult day care set up thru the VA; also some home visits by a CNA also paid by VA.

It does feel like my life is on hold, I do all the cooking, serve my husband all meals, attempt to engage him in an activity he may enjoy but it really doesnt work. He doesnt understand how to work a game on the Ipad & is totally confused trying a card game. He also thinks we’re going “ somewhere” every single night & becomes loud & nasty when I say its nighttime & we’re going to bed. Seperately. Right now hes walking around with a ball cap on, long sleeve shirt & coat, shoes & a diaper hes refusing to change on. I’m doing my best to ignore him. I realize this isnt any help for you, but it just opened my eyes & I can see I’m not the only caregiver in a crappy situation. Thank you all for letting me read your posts & venting

First of all you should be proud of yourself for hanging in there as long as you have with your husband. You must do what is best for you now that your husband is in a nursing home. If your family and kids do not understand that is there problem not yours. They were not married to him and lived with him as long as you have dear lady. I have been taking care of my husband for almost two years now and I actually love him and like taking care of him. There are some hard days and it is not easy but I do not want to give up on him. I had to retire early to become my husband's full time caregiver so yes it was hard but I want him home with me for as long as it is possible. You need to do what is BEST for you and if you do not have feelings of love for this man you need to separate yourself from him as much as possible. Please reach out to us if you need more advise we are here for you!

I think what Panda was asking was basically, how do you go on pretending? People look at a relationship from the outside and have no idea. What do you do when he dies? Pretend to grieve? Hope you don't yuck it up at the funeral? That sounds harsh, but it's reality. There are many people trapped in loveless or abusive relationships, but others think everything is dandy. Maybe she doesn't want to bad-mouth the man to his kids. It's a tough situation, and I think the only thing that gets some people through it is prayer and hope for a better future.