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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?

What you wrote could have been what I lived for over 60 years of marriage.
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.
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M209M209 Feb 20, 2021
Oh my gosh over 60 years. My heart breaks for you 🥺
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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 18, 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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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 18, 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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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.
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jfbctc Feb 21, 2021
Amen Sister Isthisreallyreal,
You answered this situation right on target. Well written. My father took a swing at my mom back in the late 60's. He was a Cop. My mother gave him 15 minutes to get out of the house, and she never let him back in. There were 5 of us under the age of 10. Fortunately for us, mom was an RN and we lived in a 2 family house owned by my grandparents. Thank you for openly supporting Panda, I too support her. No excuse for treating someone so cruelly. You're the best. Hugs to you!!!!
John
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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 18, 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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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 18, 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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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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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.
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RedVanAnnie Feb 21, 2021
I love your "eye-candy" story. I hope you don't mind if some of us use it ourselves sometime.

Humor goes a long way to de-escalate the stress.

You are a Trooper!
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I think the clarity you have about your feelings and the marriage are very significant. Some women never make that journey of truth. You’re the survivor here...and I applaud you.
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 ❤️
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Dear PandabearAUS,
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.
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