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?
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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 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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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 ..."
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.
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
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".
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.
Humor goes a long way to de-escalate the stress.
You are a Trooper!
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
I would never want to move in with any of my children but I feel I might like to be close to at least one. Trouble is I don't like the states any of them are in for varying reasons.
I wish you and Panda could ideally find a way to extricate yourselves personally. You both seem to express a desire for a life that could offer you hope in different directions which I am sure is desering. Just offering some sympathy.
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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