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Im sure this didn't happen over night.

Your husband knows how it was.

Be upfront and honest with him and let him know exactly how you feel and what he can expect from you.

If you no longer want any of the responsibility give it up to your son or your husband's family.
You can always just start talking and seeing him less.

And stop listening to everyone else about what you should or shouldn't do.

Tell them to talk to him and visit him more.
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Don't feel bad. You don't owe him your life. The guilt-trip is what keeps us prisoner, and we sacrifice ourselves for people who are just not worth it. It's good that you have gained perspective and can see your marriage for what it was. Sometimes this only happens after the person has died.
I have gradually come to realise that my relationship with my mother is not as good as I thought it was, and I will leave again as soon as I can set things up for her to live safely and independently. She treats me like an unpaid PA and servant, and prefers one of my sisters who is abusive to her.
Today, she was talking to this sister on the phone and I walked out of the room. I was doing a crossword in the other room and she walked in behind me (still on the phone) and said to my sister "she's in here" and walked into her bedroom to continue the conversation in private. Imagine how this makes me feel?
When she tried to tell me the details of her "private" conversation later I told her I did not want to know. As usual, my sister was trying to get money out of her and to get me to buy something for my niece because I have discounts.
Cannot wait to cut the toxic family out of my life. I will do my duty to make Mum safe, then leave.
I wish you happiness and freedom.
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Find a facility that fulfils their needs and get your life back. No need to feel bad, you wouldn't feel as you do without good cause.
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Sounds like you are experiencing a degree of burn out. You do all the tasks of making sure your husband gets quality care - great job! You communicate with all the family and friends who have varying degrees of understanding and good will for your situation - superb job! The fact that your husband's personality has changed and that has caused a cooling in your affection for him is understandable. The fact you still are married, check on his needs, communicate with care givers - is proof of love. The warm, fuzzy emotions are probably dampened with the stress you are currently facing. Decide on the amount of in-person contact you can handle with your husband. Enlist other family members and friends to visit him as well. (How can they "guilt" you if they don't even visit?) The goal is to make sure your husband's needs are cared for AND your needs are cared for as well.
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Two things to think about:

1) It does seem as though your husband’s visits twice a week are not helping you or him. He is still believing he can and will come back home permanently, and you are not able to make a life for yourself that leaves more focus on you. Your husband is someone you ‘no longer love or barely like’. The fact that these visits are free, paid for by the system, does not mean that you ‘ought’ to keep going with them. Does his support worker who arranges them really know how you feel about him, and about how the visits are affecting him and you? Does the support worker know about the GP’s advice to stop taking the calls – and the implication that has for visits as well?

2) Does your son understand how the marriage worked for you? Your son may feel very differently about his father than you do, and may not understand that he is someone you ‘no longer love or barely like’. Son may think that more contact would be nice for both of you. On the other hand, son may also have limited love for his father, and feel quite guilty about that. Putting pressure on you may help him to feel better about his own feelings. Guilt, blame and marriage issues make a difficult conversation to have with your son, but it might help you both.

It’s great that you can ‘fulfill all duties and responsibilities as his POA and Health Advocate’, and that you can say ‘I do all I can with companion Carers etc. I do a good job.’ Perhaps you have had too much pride to make it clear to your son and the care facility just how things are for you now. A frank talk to the others involved might help you, your husband and your son. While we hope that you can find some understanding on this forum, the people who really need to understand are those involved directly.

Best wishes in a difficult situation, Margaret
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First of all, honor your feelings. It’s normal for your feelings to change when your circumstances have changed so drastically.

Secondly, you don’t owe anyone any apologies for how you feel, not even your son.

Tell your son that it would help all of you greatly if he accepted your position in this situation.

You’re entitled to feel as you do as a wife. Your son is entitled to his own feelings for his father.

Do you have to be present when your husband visits?

Make it known to your son and at your husband’s facility that you don’t wish to be present during his visit. Can your son be there for the entire visit?

If your heart isn’t looking forward to his visits, neither of you are gaining anything from it. Reduce your anxiety by stepping away.

There isn’t any reason for you to force yourself to do something that you loathe.
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The 3.5 hour home visits can only continue if you are home to receive him, right? You don't enjoy spending time with him. You fear that he will have a violent outburst because his behavior changes rapidly after 1pm, which is why you've stopped driving him back to the care home. These visits sound like they are taking a huge toll on you.

He calls you on your home phone - do you have a call screening feature where you can see the number that is calling you?

Your son wants you to bring his father home. In my opinion, you should not be explaining yourself to your son. Does your son want to take over the visits with his dad? Would it be possible to alternate with your son if you do feel obligated to accept visits with your husband?

If you don't like pretending to be the loving wife, then you can stop. Or, you can set limits on how much of your time you *choose* to give to your husband in visits and answering his phone calls. Just because he calls doesn't mean you have to answer the phone especially when you know he's obsessive. And just because he's granted the privilege to make weekly visits out of the care home does not mean they have to be to you. No one is forcing you to see or talk to him.

You have done what's best for him - he's in a care home - and you can safely set limits so that you start doing what's best for you.
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He is no longer the man you knew, dementia takes that away. Ignore his family, if they pipe up tell them to take him in and look after him.

You have done your best, when my mum went into care due to Alzheimer’s my dad (they had been married 63 years) didn’t visit her once, too painful. I was left to sort everything out.

it’s not right others should judge you nobody knows what it’s like until they live with it.

Visit when you like to check on him occasionally, as the dementia progresses he won’t remember when you visited anyway.

I found taking my mum out of the care home to my home made her cry, in the end I stopped taking her out.

Tell the care home his calls are abusive and he doesn’t have to have the phone. Or next time you’re there take the phone with you. Dementia patients loose stuff all the time.
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PandabearAUS Feb 2021
My husband has frontal temporal dementia and very obsessive. He still has good mental capacity but it gets mixed up. He only uses his mobile to get numbers from contacts and uses the care cottage phone. It’s illegal to refuse the use of the phone and if they try to say it’s enough calls for the day he gets agitated and aggressive He has a companion Carer who comes three morning a week to take him out and visits home for 4 hours every Saturday. However it’s the constant bombardment of calls and insisting bullying to be back in the house. Really does your head in. Several calls a day about imaginary illness and “take me to a doctor”. I know this will not stop. It’s his obsessive nature and passive aggression. Makes is very hard to feel any positive feeling towards him
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I think you need to give up the assumptions and judgement of others. You should do as you believe you should do, move on with your life. You owe no explanations to others. If they are overly problematic I would simply say exactly what you told us. That your marriage never was strong, and has been miserable for one half of it and that you know now that he had problems even when you met, that you are doing your best to fulfill obligations you feel you should, but are beyond pretense at this point.
The idea of bringing him to visit you twice a week sounds ludicrous on the face of it. That shouldn't be done even if you loved him very much. It upsets his routine, gives him an unrealistic view, is destructive.
The phone is a REAL easy one. Don't answer. Call HIM every few days if you wish to.
There is also the idea of divorce. That would be MY choice, but not one I can make for others.
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PandabearAUS Feb 2021
With respect you know nothing about FTD.
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I too wonder if him coming home 2x a week is good. To me it may be giving him false hope he eventually will be coming home. And if he just gets agitated than I feel better not to bring him home. I am surprised the facility even thinks they r a good idea. Most people suffering from Dementia do better being in familiar places. My Mom was ready to go home after an hour when we took her out. I personally would stop the visits or go down to one a week. I really feel these visits do him no good. Me, I rather drive the hour and then I can leave when I want to.

Ok, so the State says he has to have a phone but u don't need to answer his calls. Please, don't allow people to guilt u. As you said he has FTD one of the worst Dementias to deal with because of violent tendencies. Its not ur husbands or your fault he has it. You need to deal with it the best you can and him living home is not the best for you. Its what it is.
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Panda, it sounds like you are still working out how much contact to have but that you are not wanting to 'close the book' as CountryMouse put it.

I did some temporary work in an aged care special dementia ward a while back. Mix of Alz, vascular & one much younger man with (I believe) FTD - just newly arrived. His wife took him out for lunch once or twice a week. I don't think she took him home at all. She said sometimes lunch out worked, sometimes they grabbed a sandwich & sat in a park, sometimes they came back early. They may have even met another relative or friend (for backup) too. He had been placed due to violence & inappropriate sexual behaviour in public. Staff attended him in pairs & had a behaviour plan.

Would a different location work for you instead of bringing him home for visits?

Just another idea.
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PandabearAUS Feb 2021
On a Saturday I take him out for a drive and lunch. My son is always present with the home visit. He comes by taxi as he has funding for this I have made the visits earlier and going home earlier as his demeanour changes rapidly past 1pm. I no longer drive him back as it is a one hour trip each way and I just know that one day he will lash out while driving. He is currently having a behaviour review with help from his Dementia Australia Key Support Worker. What’s made it worse is that I live in Victoria whose Premier completely screwed up the COVID management which for nine months stopped anything getting done or moving forward. Boredom is the biggest problem because being an obsessive meant he was a work-a-holic
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It is what it is. If being a loving and devoted wife is an act
for you, then you shouldn't be playing that role anymore. It's not fair to you or your husband. You too have a right to have some life and happiness for yourself.
It would be a good idea for you to transfer POA and Health Advocate over to your son. Let him have that responsibility now.
As for everyone else your family and his who throw in their two cents about you and everything you're doing wrong, ask them this. Did they live in your house? There's only two people who know what goes on in a marriage. One is the wife and the other is the husband. No one else. Tell the family members this. Then tell them to mind their own business. Your son too. You have just as much right to some joy in life as anyone else and with no guilt attached to it.
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Do you think this is compassion fatigue, and if you got a month (say) off you might come back refreshed?

If you're sure how you feel is permanent, and perhaps it's long overdue, then I have to say (you may not like this) that I don't myself think it's a good idea for a person's POA and main care co-ordinator to be someone who doesn't like him. It isn't that I question your conscientiousness. But, just to take an example, these outings to your house are supposed to be for his benefit, yes? He becomes exhausted, agitated and aggressive, and gets what out of it? Whereas if his primary carer was some court-appointed social worker who didn't feel duty-bound to maintain this connection with the family home, it would be a lot easier to write the visits off and find alternative forms of enrichment. Your feeling bad, or being made to feel bad, does him not an iota of good.

Could it be time to close the book?
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PandabearAUS Feb 2021
Sorry but you are way off
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My mom has severe dementia. We just had to move her from Senior Living Center Independent Living to Memory Care. A month ago she fell out of bed and something snapped causing a huge decline in memory and change in behavior so her independent living facility gave us no choice but to move her. And the move was such a dramatic change to her that it cause even further decline in memory and change in behavior. In a matter of a week she went from knowing the date and where she lived and that her husband died 13 years ago and that she sold her house and moved by choice 4 years ago to thinking my brother was my dad (her husband who died 13 years ago) And getting angry at him accusing him of cheating on her and yelling at my brother like he was my dad and packing up her belongings telling the facility someone is coming to take her home and when we ask where home is, she says that it’s her old house that she sold and hasn’t lived in for 5 years. My mom and I have always been like Sandpaper. We have never seen eye to eye and have always argued over everything. Our relationship has been that way ever since I can remember. I do love her in a way, and feel obligated but I can honestly say I do not like her and I resent her very much. My brother has always been her favorite that she would do anything for like give him money all the time and she has never helped me with anything. She never calls just to say hi and see how I’m doing but only calls when she needs something. It’s been that way for 30 years or so. But she never calls my brother for help only me. Help with finances and to take her to run errands and dr appts and I’m the one she accuses of stealing all her stuff when she loses stuff. The whole year of 2020 every phone conversation with her got so elevated with both of us arguing loudly that it always ended in one of us hanging up on the other. It got to where I could just see her name on caller ID and my blood pressure would go way up and my hands would start shaking. And I started ignoring her calls unless she just kept calling over and over. But then it got to where she was calling over and over every day and night over nothing so I finally blocked her. Knowing that if an emergency the facility or my brother would let me know. I would call her every few weeks and that way it was when I was prepared to try and handle a conversation with her. I only went to visit her once every 4 to 6 weeks. After she started accusing me of charging my own groceries on her charge card when I bought her groceries I explained over and over again that I was charging her groceries on my own credit card and that she owed me money not the other way around but every month when she got her cc Bill she would accuse me so finally I told her that I would no longer go get her groceries and told my brother he would have to do it cause I was done. My moms sisters call me all the time leaving mean messages about the way I’m treating my mom cause my mom will call them crying making up all kinds of things telling them. So I chose 1 person, my favorite aunt to report to regularly and told her she could pass on the update. And if contacted by my other aunts or uncles I would let them leave a message and I would email or text them back replies. That way I avoided talking with them and losing my cool with them. My mom had been in new facility week today and I’ve not seen her since I moved her in but am going today. But nurses tell me that she is packing up her things telling them we are coming to take her home several times a day and the nurses unpack her and explain that she is at home there but she does that repeatedly thru the day. My brother of course has seen her several times. I am not prepared for all the behavior changes that they have told me about but I will try to not argue with her and be as nice as I can. But I will only visit her about 1 per month after this. It’s hard to take care of someone you don’t like. I understand.
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PandabearAUS Feb 2021
I really feel for you. Amazing how family members expect you to drop everything and look after her. In the end I just told each one if they felt that strongly about it please feel freeTo go get him and look after him in your home. Of course none did.
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Maybe start by giving yourself an hour a day that you turn off, or unplug your phone. If questioned, say that it didn’t ring on your end.

The next week, turn it off for two hours a day.

Increase the time until you have peace in your heart. Then, maybe move on to seeing your husband’s number and just ignoring it, and answering his calls once a day.

Baby steps, until you feel stronger and have some peace back.

Best wishes to you.
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I went back and found your first post back in February 2019

https://www.agingcare.com/questions/why-all-the-guilt-and-soul-searching-446710.htm

Hard to find any future ones but looks like you were struggling back then. Not all of us are caregivers. And caring for someone you don't like would really be hard. As grandma said. Others just don't understand what it is like to care for someone with Dementia. It is so unpredictable. As the Caregivers, we are always the ones that get blamed while others do nothing. When family starts on you, tell them they can care for him if they want. You are not the only one that has needed to put a spouse in care because it gets too much.

I think you can step back. He has been in care for 15 months. His basic needs are being met. He is safe and cared for. All the hard work should be over. Its just maintenance now. Is there things you really don't need to be involved with now? And visiting. Start cutting back. How often do u go? How far away is he? If you think once a week is sufficient then thats OK. Once a month. Everyone can visit him at other times. The phone...are u the only one he calls? If so, lose it. The staff will call u with any emergencies. I have my cell on "Do Not Disturb" and set for contacts only. All other calls go to VM. If you can do this, just take his number out of your contacts he will go to VM and you can listen to them when u want. If a landline, let them go to VM again answering them when u want. Block him if you want if his calls are just asking to get out. By blocking him you don't even know he called.

You may want to tell staff that you are taking some time for yourself. That his constant calls are getting to you so you won't be answering them for a while. If he really needs something for his personal care, or Nurse needs to call about changes then feel free to call but otherwise, for now, emergency calls only.

I would not take any family calls if its just to tell you what you should be doing. If you can, get away. Please, do not feel guilty. Like a member always says "Guilt is self imposed".
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PandabearAUS Feb 2021
In Australia you cannot deny a person access to the phone. He has stopped using the mobile and uses the home phone. He gets the numbers out of his contacts. Before he stopped with the mobile, it was not unusual to get 12 calls a day. He just had an evaluation which said his behaviours and his determination to return home has not changed one bit. He is also very obsessive. It’s one hour each way to visit so we have a service which brings him to visit twice a week and I try to do something with him but I don’t like it. He can only stay about 3.5hrs max as his behaviour deteriorates and he gets abusive my son always makes sure he is there. He has FTD not Alzheimers which means he doesn’t forget, just gets it mixed up and FTD patients are often very violent and many places won’t take them but I got him not a new group home that takes difficult cases.
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I don’t think you need to pretend anything. Without blaming or shaming your husband it’s okay to quietly tell friends and family that your marriage wasn’t healthy even before the diagnosis. No further explanation needed. It’s important for everyone in care to have someone with regular eyes on both them and the facility. When the facility sees that this is a person who’s cared for by their family, they tend to care more. If you decide you can’t be this person I’d hope you find others to fill that role. As for the phone calls, don’t accept them, there’s no reason to listen to what you know isn’t true or possible. The facility will let you know if there’s an emergency or urgent issue.
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Dementia is a funny thing. (and I don't mean dementia is funny)
the person WITH dementia spends YEARS covering up the fact that they know something is wrong.
Family spends years denying, excusing, ignoring defending what is going on.
Friends ignore and make excuses about the odd things that are happening.
So friends and family are now grappling with a "sudden" change and maybe are questioning why he had to be placed because "he wasn't so bad". But they don't live with the person, they don't see, hear what goes on when no one else is around.
I guess what I am saying is that other family and friends are in denial, a bit of grief and shock.
YOU do what is best for you. And you are the only one that knows what that is. For some daily visits are what they need and want. For others weekly is more than enough.
Don't let anyone tell you what is best for you. If your son wants dad visited more often he can be the one to visit.
As for the phone calls. Let half of them go to voicemail. In a month or so let 3/4 of them go to voicemail.
You also might want to talk to your doctor about talking to a therapist. You are dealing with a lot right now and it can effect your health. And I am sure you want a "safe" place and person to talk this out with. If you can't do that the Alzheimer's Association does have a phone that is answered 24/7 and they do have counselors that you can talk to. 1-800-272-3900
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WritrChick Feb 2021
You are so right about the covering up. My Mom lived alone for several years after my stepdad died. She was fine for a while, but in the last few years I realized something was not right. During phone convos, she was 'fine, everything was fine', but when I visited I began to notice her once immaculate housekeeping had slid, along with personal hygiene, and she was not eating much of the groceries we were having delivered.
When I reported these things to my sisters, they were shocked.
Now my husband and I have moved onto her country place with her, as she can no longer be alone. When I report the things she says, my sisters have trouble believing how much memory loss she is now experiencing.
People who aren't on site 'just don't get it'.
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I’m glad the GP advices to stop taking his calls. Abuse of any type is never acceptable. You have done all you can to help your husband. I’m glad your son is helpful, but his pressuring needs to end.
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BurntCaregiver Feb 2021
You are right Sunnydayze. The son needs to lay off with his pressuring and guilt-tripping his mom. The father/son relationship is different than the husband/wife one and he needs to understand that.
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The placement is new yes? I think it will take time for you to adjust. It must almost be like being a widow - but with a husband living.

I met a lovely lady years back who enjoyed her hobbies, grandkids & frequent travel. Her husband had early onset dementia & was living in care. He was physically fit & she had been told he could live for 20 years (which he did or close to I heard) & so told to go live her life. She attended to the POA duties & visited but not that frequently - not sure how much. Once he didn't recognise her at all she only visited rarely as it only confused him & wasn't good for her either.

She ignored any judgement over this. She knew she was ensuring he was cared for.

I hope in time you come to feel acceptance over his situation & take steps to creating a beautiful life for yourself.
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PandabearAUS Feb 2021
My husband calls several times a day to tell me he is all well now and I don’t need to keep him there anymore. Does your head in
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.... Sorry it posted twice, and no delete option exists ...
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So many within this website have experienced the same, as you. We understand 100%

Since you're 99.99% done, block whatever number he is using to call you, then tell everyone it's their turn to handle everything, their criticisms will likely diminish, when they're assigned responsibilities. How old is your son? Can he handle any responsibilities on your list of tasks?
Maybe only keep one responsibility for yourself such as bringing him his favorite snacks once a week? Drop-out of the guilt zone by viewing yourself as a survivor of an abusive a**hat's former control. Based on your post you're still caught within his abuse cycle that runs in a generalized patterned cycle; Abuse calm abuse calmcalm calm abuse, calm,etc. When an abusive person thinks s/he is losing control s/he will lengthen the peaceful phase to create hope/doubt in his/her victim/target's mind that wavers between hope/doubt, "maybe things might work-out as promised in the beginning, things might not be so bad ... maybe it's me...maybe I'm the problem ..."
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PandabearAUS Feb 2021
My son is a great help but assumes that if he keeps guilting me to bringing him home more often it will help. It does not. He’s putting a bandage on his guilt. The GP called today and advised that we have to stop taking all his calls
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