My Husband has been in care for 15 mths. It was a long hard road getting from initial behaviours to diagnosis (FTD!) to placement. Nearly literally killed me. Nothing but abuse and accusations from his family and some of my own. The truth is I was unhappy in my marriage for more than half of it. Now with his illness and other issues that have emerged I see he had problems from the day I met him. Even from care he still tries to maintain control by ringing me several times a day then my son who guilts me into seeing him more. I do everything needed to help him improve his quality of living in care liaising with all the different participants and authorities involved. It’s a lot of work as many would know. However I am sick of playing the loving devoted wife. I am not. I fulfill all my duties and responsibilities as his POA and Health Advocate. I do all I can with companion Carers etc. I do a good job but I don’t really want to see him that much and then I feel bad for that which in turn makes me feel bad.
There must be others who feel the same. How do you do it?
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 ..."
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.
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
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'.
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".
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.
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?
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
The reason your husband is in a facility is because you were no longer able to take care of him. That’s the job of the facility staff now.
Its time to decompress, stop answering his phone calls, take a long break on the visits and focus on your own healing. It’s time for the care giver to rest. Guilt is a worthless head trip and energy thief. No one knows what you’ve been through except you.
If you’re able to afford a counselor, I’d do that. If not, some of the best counseling and helps can be found on line.
God has given you a life with limited years, as He has all of us. Your days are written in His book. I pray that you will find your genuine self once again and the dreams you had as a little girl would be reignited once again. BREATH.
My Mother in law is in A.L. now. She’s always been a difficult, mean spirited, negative person. I feel zero obligation to visit or call. I only do it when I want to. I was her kicking post on many occasions and suffered from her abusive treatment. I don’t have to do that anymore. 🙌 🙌. Woo hoo!!
FREEDOM!! Also, I owe no explanation to anyone.
Best wishes to you. Find joy in who you are and what you like to do ❤️
You have ‘served your time’ and now need some time off for good behaviour so seize it for yourself. If you’ve been downtrodden by him they perhaps have adopted some of those traits towards you too???
Most people who do t like it when you become assertive have done well out of you not being assertive. It is about time they respected your rights. I would have
1) A regular day/s you visit and stick to it.
2) Turn off your phone to everybody except the care home who will call in an emergency (that’s what you pay for).
3) Join something where people don’t know you and meet the new you without any judgements.
4) Seek a therapist even if just for a few sessions to help you on your journey.
5) If he becomes more toxic reduce number 1).
He will want to control you from his bed like my dad but it’s words now not behaviour and take that to your counsellor.
Valuing yourself is a ‘habit’ that you need to learn and adopt.
Best of luck xx
I Love this.
Your descriptions of a controlling personality from the front line are very very useful. Thanks for sharing.
The advice of a social worker, 3 physical therapists and a doctor to put him in a care facility was what I did. He is in the memory care unit. I was OK with it. He was not. The sons were not. I, too, felt guilty. They made me feel like I deserted him. He accused me of wanting to "put him away". I was there 4 times a week; doing his laundry, taking care of all his complaints with the aides, etc., dealing with the medical and all the authorities involved.
The stress raised my blood pressure to a dangerous level.
Then, one day while praying for strength, the thought came to me that guilt never comes from God. I started to take care of myself. Got a physical, got the BP under control, found a great physical therapist for an injured shoulder trying to lift him when he fell, joined the Y aerobic class, went to lunch with lady friends. I visited him twice a week. Still had to deal with all the necessary things. I tried to get the stress level lower, I meditated, which is recommended
Then Covid-19 happened. I was not allowed to visit at all. The best thing that could happen in a terrible situation. He had to learn that I was no longer his servant. The calls stopped.
It took a while, but during this past year, I am stronger, happier and finally have a life knowing he is being taken care and I do what is necessary as POA and medical advocate for him.
As for the sons, they can see a difference in me; they see he is well cared for. They have come around to see he is in the best possible care because his dementia has worsen.
Pray for strength to be yourself. Do something nice for you. Guilt never is a positive, get rid of it. It will help to keep you healthier.
I will pray for you.
I write this from a patients perspective. I was diagnosed with early onset ALZ almost 5yrs ago. I call this my pretend marriage, this marriage was legally on the books for 14 yrs. My ex had more boyfriends than years in our fake marriage. Finally I tired of her abuse of alcohol and other drugs. Go forward my real marriage I've been with my wife for 27yrs of dating and marriage. We share a lot of communication and we've never fought.
I lived many years of my early adult life feeling very much like you've expressed. I am very pleased to hear that you've expressed your thoughts to us on this forum. I'll start here by saying your own mental health is as important as anyone else. You are worth having some time to enjoy life and looking out for your own best interest. I would encourage your adult son to take the load off of your hands, and tell him you need help. Force him to step up to the plate.
Nobody ever knows what goes on in anyone else's marriage. Yes like me you husband is diagnosed with FTD, me ALZ, no cures on that front, you've arranged to get him in a secure facility, 3 hots and a cot. I would keep my distance from the source of my suffering. I stopped answering the phone when my ex would call. When my oldest son reached his majority, I made it clear, he could always talk to me about problems, but not to expect me to get involved with his problems with his mother, he chose to leave my home and live with his mom.
There is 16 & 18yrs between my oldest, and my second and third sons with my DW, and 26yrs between my daughter and her oldest brother. I've explained to all of them, that after I have been institutionalized. Let mom go on making a new life for herself. We have an 8yr difference in our ages. I'd like her to be able to get on with her life. She's the great love of my life, I don't want her mired in feeling responsible for me. Let the professionals do that and be happy. I hope this offer hope and help to others that read my comments.