this is hard

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Emily 123

I'm so sorry, Jennifer. It's a hard place to be in, when the primary caregiver is in denial. Can you send him to the spouse discussion section here? I think that if he's open to it, it would be a tremendous help to him to read from others in the same boat.

Have him read this too? understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half

It might help to have your mom go see her provider to have a UTI ruled out, and to have her meds adjusted so she's able to handle these changes in a more peaceful state of mind.

It may be that your dad has decided to care for your mother at home until the bitter end. His plans may be based on your being available, but that might not be a reasonable assumption. What are his plans? If you are assisting with caregiving, that should be discussed with you. As well, what are the plans if your father becomes ill? Have you or other family been assigned POA for mom and dad in that case? He may be overwhelmed and unable to act--can you get him to a point where he can discuss those?

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Anonymousjpl123

Sounds like an incredibly tough situation. You are being asked to do more than most people can do - so don’t feel like you should have this all figured out. I know firsthand trust me. Is your father willing to consider in home help for a few hours? Has he sat and talked to the doctor? Sadly, my experience was that nothing changed until it had to, and it didn’t take that long.

I would definitely start the process of looking into places near you that are within your budget or services available. The more info you gather now, the better prepared you will be when a change needs to be made. Are there in home services available? Are there assisted living or memory care places near you? Do you have an elder care attorney?

i know it’s a lot! It is. But knowledge is power and it’s all we can do. I’m sure others will have good advice. Read through posts you will see you are not alone.

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harshedbuzz

@jennifer1995

This all sounds like a terrible situation. Dad's struggling, mom's getting substandard care and you're being eaten alive with stress. I'm sorry.

Something needs to change. My focus is on dad as he seems to be behaving in ways that just are not rational. Calling you during work for a non-emergency is not something a normal person would do after being asked not to. Could he be having a cognitive shift of his own-- perhaps not as far along and with different symptoms and behaviors than mom's? It's fairly common to have a second parent with dementia go unrecognized because it looks different or because you're ascribing the symptoms as a function of stress or depression. You might want to contact his PCP, discretely behind his back, and ask the doc to do a quick screening like MMSE or MoCA at the next appointment.

I can appreciate not wanting to unduly upset your mom, but he can't let a woman with a diseased and compromised brain call the shots. Could he be worried about the cost? I know my mom was very fixated on the eye-watering cost of HHAs. Dad had lost a lot of money "investing" earlier in the disease, so cash was tighter than she had been led to believe. She talked about wanting to care for dad herself, marriage vows and such, but really she didn't want to not have money for herself and her future needs.

There are medications and strategies that could help your mom adapt to care in the home. You could introduce a HHA as a day cleaner that you gifted them to pamper them. Maybe a friend of yours who is down on their luck and needs the money making them her a "helper". You could bring someone in as a friend who stops by to visit a few times and then have them stop by when your dad needs a break. Medication to relieve her anxiety and agitation could improve quality of life for all 3 of you.

You asked in another thread about talking to mom's neurologist. Yes, you may. If you are listed on the HIPAA documents, you can have a conversation with the doctor. If you are not, you can report your concerns, but the doctor won't share any information with you. If you aren't on HIPAA forms, you might want to tag along on the appointment and ask then.

One strategy that I used when my mom was behaving similarly about care with dad was a CTJ discussion. If she wanted my assistance, I insisted she had to compromise on some things. The other thing was getting mom an IRL support group. She often blew off my suggestions for issues she was having, but when her peer group gave her the exact same advice she took it to heart.

Good luck.

HB

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M1

Sounds very difficult. But your dad may have a point: if she is delusional and paranoid to the point that he cannot take care of her at home, she may in fact need to go to the er and be admitted to a geriatric psychiatry ward for evaluation and medication. She can be placed in memory care from there, and the social workers can help. Important question: does anyone hold power of attorney for her? This matters a lot at this point. If your dad has it, are you the backup? Because it sounds like its beyond him at this point. You may need an attorney to help sort this out if not already addressed.

I know from first hand experience how difficult a geripsych hospitalization can be, but it may be your best route forward at this point.

Edit: just saw that he does have Poa and you are backup. Sounds like you need to take over, and i would take her to the ER. He is telling you, directly and indirectly, that he can't do this any more.

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Emily 123

Hi,

There have been some great suggestions here.

Your mother's needs have progressed beyond what your family alone can provide.

The ED is a sound choice. Your mother has an urgent need for assessment and medical management of her symptoms. Once meds can be adjusted so that your mom's not hallucinating, the hospital care manager and social worker could work to expedite discharge to an appropriate facility.

Your dad, the POA and primary caregiver, asked you to take her and you refused. ''He wanted me to take her to the hospital which I would not have done anyway. She does not need an ER visit for not trusting him.'

Right now the need is to get your mom a bit more stable, and then next steps can be assessed. It does sound like everyone's trying to let your mother have control, but she no longer has the capacity to use reasoning to make a good decision.

It may be that getting your mother out of the house will buy your dad some breathing room so he can think more clearly.

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mommyandme (m&m)

Jennifer, you are doing your best and your folks are fortunate that you’re an advocate for them. Hard as it is, you’re doing a great job. Working through this new reality is overwhelming and takes a bit of time to come to solutions that make sense. I only had to manage my mom. I think that if both parents are involved, although bittersweet, it would be so much more difficult.

im so sorry for all these challenges, this journey is horrible. Someday soon, I hope, you may be able to find humor and a little peace. My thoughts are with you, keep coming back and share anything and everything.

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Emily 123

I misunderstood Jennifer. I apologize. It sounds like you're working hard to get your mom the care she needs. Overcoming family pushback is difficult at best, and you're limited as to what you can do if your dad can't adjust to your mom's reality, and isn't on board with going along with what she's experiencing. I hope you're able to find a long term solution soon.

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Emily 123

I read! So slow progress, but that's not your fault, and it is progress. Respite may be the thing that gives dad the breather he needs to press on.

It will be hard to get your dad to act faster. As you told harshedbuzz, he's super non-confrontational, and you don't think that his lack of follow through or unusual solutions to things (like the knife problem) are due to any cognitive shift of his own. So his pacific nature defines his caregiving. While he's overwhelmed he's not quite ready to move mom to long term care, which is a big step.

I think he runs to you for support (because he's non-confrontational) and to vent. Of course you're concerned and want to help the two of them (your poor mom!) and so you offer solutions. But because he's venting and not ready to take the next steps, or to anger your mom, he isn't going to act on them. It's got to be tremendously stressful, especially because he just doesn't seem to be able to try to meet your mom in her reality. That alone would make things so much easier. To me, there's a disconnect between calling you multiple times a day to resolve issues and not being willing to at least read up on strategies for dealing with the disease.

Your sister isn't helping matters, but since she's coming for a visit soon I would recommend you & dad both disappear for the day so she can watch mom. Better yet, why don't you make plans to get out of town (or at least hide) and get a little 'me' time in, with your phone going directly to VM? Don't overthink it with ''what if's'', just go do something nice.

You're taking positive steps for self care.

You will get through this!

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Emily 123

It sounds like you’re establishing some boundaries and it’s helping move things along. Good for you! It’s hard to navigate when the parent- child relationship flips. Having defined boundaries rather than being the go-to solution for your dad can help him appreciate the need for assistance.

As you say, he has his own issues navigating relationships, which will challenge you doubly. I don’t think you can change him, your mom isn’t able to think logically, so the third part of the care triangle is you, and his behavior, intentional or not, relies on you to be a 24/7 crisis manager and aide.

I hope you have a lovely ‘break’ and keep successfully building some space around yourself as you work to help your family.

harshedbuzz

@jennifer1995

I am sorry this is all so difficult for you. Unplugging from the situation while your sister is on hand makes sense, but I might spirit dad away for a break and let sis sees this new version of mom firsthand and without a net. Maybe mom won't know her. Maybe she'll think sis is dad's new girlfriend.

You said: " I don’t know how to explain it but her doctor has said she doesn’t need to be hospitalized."

I think maybe things have changed. The doctor may not be fully aware of the situation; they aren't there in the moment. Many PWD can showtime at their appointments holding it together for the short time the doctor is in the examination room. Many spousal caregivers are poor reporters of what is going on at home. Perhaps dad can't speak freely because your mom is there in the room and he doesn't want to upset her. Or maybe he doesn't want to admit how badly he is managing the situation.

My dad could put on a worldclass charm offensive at his Geri psych's office, so when I asked for an increase in his antipsychotic medication I am sure the doc thought I just wanted to sedate him. It didn't help that mom liked to present herself as a calm and capable caregiver despite struggling at home with a particularly challenging PWD. So I sent the doc and email with an attached video or dad acting out and threatening me which led to change in dosage.

"They do have long term care insurance so that will cover a lot of her care."

That is good news.

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VKB

Jennifer, your mom sounds just the way mine was. I decided my stepfather and my mom needed help. I began to cook for them and then kept adding on more jobs. Eventually, my husband and I had to hire help. I'm glad they had money in the back for this care. Both of them early on before I we knew what would happen signed papers so I had power of attorney and health care proxy already established for them. At first, they did not want help, but I kind of pushed it on them. Eventually, my stepdad understood and thanked me when he was dying. I prayed through the whole thing. I believe the Lord guided me and kept me going. I prayed for you and your loved one just now. Hugs

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citeon2cv

Hi went through all of that with my parents. I worked away mum often locked the apartment up and pretend they weren’t in to the help that was arranged for them. So many time I had to come home early from work. Dad bless him would be so hungry mum in her own world. . I made the decision to give up work to be there help. Dad refused to talk about mum getting her diagnosed etc or poa for me. They did i fact loose a lot of money from their bank account over a very short time. After dad died I was able to get mum diagnosed. Relations with mum and I had always been a bit rocky . I moved mum in with me as property was better designed for her needs. It was a very difficult time. I made the heartbreaking decision to put mum into residential care. She deteriorated so much in such a short time I felt it wasn’t fair on her. I bought her home again with me.

it is hard when parents rely on you and won’t accept care or help from others. Only advice I could give is whatever you look after yourself. Keep a good self care routine for yourself… each stage does change.