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I moved my mom into my home about 8 months ago. My dad passed away a year ago and she has really declined since then. Before she came to me, she fell which resulted in a hospital stay. Bloodwork showed she was extremely anemic. She went to rehab for a few weeks and then came to live with me. Now her bloodwork is very good as I am feeding her 3 balanced meals a day. My problem is that I cannot get her to do anything other than watch tv all day. She won’t exercise, come sit with us, eat meals with us. We offer to take her on car rides, walks, or just sit in the porch. She says no to everything. The doctor prescribed an antidepressant but she won’t take them. She says she is not depressed. She just lays in bed and gets weaker and weaker. We have had PT come in many times and she will do exercises for them but not for me or herself. She says she does not want to go to a nursing home but wants to stay with us. This is fine with me but I just need to know if I’m handling everything correctly. She won’t shower - lord knows I’ve tried. She just says no. She does a bird bath but I’m worried about cleanliness. She has had a few UTIs and I feel that it must be from not bathing properly. I installed a bidet toilet seat to help with that but have not told her yet. I know she won’t want to use it. We have talked about the bathing issue many times. She doesn’t want an aide to come bathe her and she doesn’t want my help with toileting or bathing. So can I just let her continue like this? I’m trying to respect her but this is so hard. She is 82. Thanks for any advice.

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I personally think your mother has given up on life and that's why she's saying 'no' to everything. If she wants to continue living with you, she'll need to become a bit more compliant because you do not want to be an accessory to her demise, like she's insisting on. While she's entitled to live her remaining life as she sees fit, you too are entitled to see that her UTIs are minimized, and that she's being cared for properly. Meaning, mother, you need to agree to taking anti depressants, you need to agree to eating at least 1 meal a day with your family, to get my help with bathing 2x per week, with toileting, etc. It's not okay for her to turn herself into SUCH a burden that you'll be at wits end in no time and back & forth to the doctor for antibiotics! UTIs can easily turn into kidney infections and worse in the elderly who get them recurrently.

If she prefers to go to a nursing home, they will bathe her and medicate her there instead, upon doctors orders. Her choice.

That's what I'd do if were my mother. She doesn't have to become Suzy Socialite, but at the same time, she DOES have to be somewhat compliant and agreeable to living a life of minimal cleanliness and activity on YOUR terms. Your house, your rules.

Wishing you the best of luck laying down some boundaries & then sticking to them!
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Hannah16 Apr 28, 2020
Thank you for your reply. I will keep trying to be firm with her. We never argue- she just sweetly says no. I guess I am struggling with the role reversals we are going through. This forum is a great sounding board.
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Dear Hannah16,

I feel your angst, you sound like a very good daughter who is willing to do ANYTHING to help her mama. I identify so much with you.
But ... here comes the but ... you are not helping her or yourself (or your family) by avoiding the care that your mom needs. Just because her answer is always 'no' doesn't mean the answer is NO.
YOU are the caregiver, YOU make the decisions. YOU are going to have to be (sorry to say) the bad guy here.
She doesn't want to bathe ... okay well she HAS to bathe (no questions, no compromises), so you get help to come in and bathe her. You'll be shocked by how compliant she will be with other people - caregivers who are used to dealing with elderly. They are amazing! My mom did a complete turn-around when I got help to go in and do what I could not do.
I honestly don't think we are equipped, as daughters, to know how to handle this. We are also learning. Don't be afraid of giving up some control to caregivers, or doctors, or experts. They have the training and the knowledge to help you through this difficult time. The longer you wait to take these steps the more difficult it will be, not just for you but for your mom! She needs the help, she needs to be told what to do and she is NOT going to listen to YOU. She will listen to strangers! And gradually she'll get to know them, and have at least one favourite, and she will find a way to cope. You cannot make her cope, has to be her decision. And they NEVER listen to us! You know I'm right!
I send you all my good vibes, please don't wait to reach out and get the help you (and your mother) need. There's NO WAY on earth you can do this by yourself.
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BeyondRetiremnt May 1, 2020
Zuzu114 is correct. Your parent will tell you NO. But if the help shows up, they are great at convincing them to cooperate and get the bath or checkup done.

Music, instrumental uplifting music, helps open the path in the brain so one side can communicate with the other side. Dementia shuts down that communication. As dementia worsened, the music still helped some. If I could get my mom back for only fifteen minutes, it was wonderful. It is heartbreaking when they don't recognize you any longer. She thought I was all kinds of people, even her mother. Dementia is short term memory loss. I kept pictures around her bed, so she could see her family. She didn't know me as an adult, but she knew me as her little girl. When you are with them 24/7, their brain can't process you because of the short term memory loss. But my husband who worked all day could come home and she knew him at first. Once dementia turns worse, they know no one.

Ask them about their family growing up. Write down or record their answers. Ask about their children and grandchildren. They do have memories even though they can't always keep things straight. Remember, most of what they say about the past is correct, but they add in things if they can't really remember. So check it out or write that they had dementia and this was the best of their recollection at the time. These memories will become priceless to the entire family.
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What is she thinking? That's not a rhetorical question, I do mean what does she think. What does she think about, how does she see her situation, what if anything does she talk to you about, and what can you *get* her to talk about?

Change the subject from her and her lifestyle and health, and widen out the topics to - for example - your Dad, their life, current and past events. Not all at once! Just dig around a bit, conversationally, and see if you can get a glimpse of her point of view.

The thing is, yes, you can ethically let her continue like this. But it may be that there is no need for her to come to the end of the road just yet, and more time and research might give her a chance to find something she wants to do and something to look forward to once again. It's at least worth having a go :)
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I want to second what Sunny just wrote.

For many of us, our loved one's cognitive decline looked like apathy, laziness "pity party" (my brother's words).

In your shoes, I would be figuring out the best way to get a thorough cognitive evaluation as soon as you can get an appointment .

I'm not talking about "who is the president and what is your address"? A real evaluation that assesses her thinking and reasoning skills
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Daughterof1930 Apr 28, 2020
Barb is very correct. Now that I’ve read Hannah’s replies and understand more of what’s going on, it’s clear that mom needs a far more complete evaluation. I also have the hindsight to know that the apathy my mother developed after a small stroke was a far bigger red flag than any of us knew at the time. She was insulted by the word “depression” so we walked on eggshells and avoided the topic, but how I wish we’d insisted on better, more complete care
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She’s entitled to choose her activities and treatment, or lack of them. But at the same time this is your home and she is an invited guest there. It’s not too much to expect a regular bath, and when the depression is bringing down the mood of everyone she needs to agree to the med for that. Have an honest talk with her and tell her these two things are conditions of her continuing to live in your home. And then follow through, handing her the med and watching her take it and overseeing the bath.
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Hannah16 Apr 28, 2020
Thank you for your reply. I am going to talk with her when
she wakes up. This is very hard I have not had a break since early December. I appreciate the dialogue with others in a similar situation.
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If she's having lots of toileting issues, like you describe in your post below in which she's soiling the bed, won't use commode, won't bath, etc., she's experiencing something. Even people at age 82 are more engaged, unless there's some major medical problem.

All of the lethargy is likely telling you something. I'd consider that it's not likely that she's being lazy, or uncooperative on purpose. If she could do better, she would. You say that she's pretty mentally okay, but, your description doesn't sound that way. Has she been evaluated for cognitive decline? I would insist on that with her doctor and be sure to let him know what you have been observing too. If he thinks she needs the medication for depression, it might something that you insist on, if she wants to continue to live with you. She may not be able to really make informed decisions about her healthcare.

There might also be some dementia, but, it's difficult to say in the early stage. What you describe is very similar to what I saw with my LO in the early stage. I didn't know what it was, but, it was depression due to cognitive decline. I didn't realize that a lot of the things she didn't want to do was due to fear, confusion, lack of energy, loss of memory, embarrassment, etc. Things were changing in her brain and it frightened her. She wasn't sure how to tell me. Later, it was found to be dementia.

I hope that you can find some answers. When my LO went on a med for anxiety and depression, it was big help. Her dementia continued, but, her mood was greatly improved.
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Have you considered a Hospice evaluation? She (and you) may gain some peace from acknowledging the fact that she wants no treatment.
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Hannah16 Apr 28, 2020
I have let this thought enter my mind. My dad was on hospice so we are familiar with the process. Mom has no medical issues other than high bp, high cholesterol and back pain from an very old injury. She is healthy! She is cognitively pretty with it too. But she lies down in bed all day every day. I cannot even get her to sit up. How do I bring up Hospice with her? This is very sad for me to just see her waste away. She was never too active in life even when younger so this is an extension of that but still very hard to witness. Thank you for your advice ❤️
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Read my reply to Lealonnie.

Your Mom may have lost the will to live. No anti-depressant is going to help that. It didn't my MIL. She did well with the death of her husband 20 years earlier. It was losing her house and freedom that did it. She was 91. After a UTI she went to rehab. Since her 3 sons all lived one to two days away. So she was being transferred from Fla to Ga (nearest son) to complete rehab. She was told after she completed rehab, she would need to make a decision which son to live with. She was a stubborn woman and passed a day before the transfer.

I would call Hospice and ask if they can evaluate Mom to see if she has lost the will to live. If so, then they can keep her comfortable.

To help with curbing the UTIs, you may want to try cranberry tablets and a probiotic. Lots of water. (may want to have Mom checked for dehydration. Causes depression and Dementia type symtoms) Keep wipes handy in the bathroom she uses.
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Hannah16 Apr 28, 2020
Should I talk to her about hospice before I call them? She is very cognitively aware. I feel as though bringing up Hospice is telling her she is dying. I’m not sure that she is. She still has her appetite and likes to drink a Coca Cola. She just has zero motivation to do anything but lie in bed and watch CNN all day. She will not even change the channel. She will not sit up to eat her meals. She will not wear pants. Since this latest UTI she uses the bedside compose. Sometimes she poops in the bed and cleans herself up. When I come in she hands me a bag of poop and wipes to discard. I could cry this is getting so hard and I just am not sure what to do. Doing the very best I can and I want her to be with us.
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She is Residing under your Roof. You need to Remind her of this. tell her sh eneeds a WEEKLY BATH so NO PIN WORMS or BED BUGS. Tell her if this Happens, They will Have her Leaving to ANOTHER FACILITY. You canno tmake her Taake the Depressed Pills but Can Grin dthem UP in her Food. As Far as making her Dpo things to Excerise, She is Old and thye will DO what they Please at tghis age. believ eme. Stubborn as a MULE.
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Try telling her that all of her meds are vitamins. Also tell her that her Dr said that if she doesn’t take them to make her feel better, he will order her to go to a rehab, because she is causing herself self harm. This worked with my Mother. I don’t ask my Mom, I just say it’s time to do so and do. Daily prayer really helped me, as well.
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NeedHelpWithMom May 1, 2020
It’s true. They turn back into children. We wouldn’t ask our children to do things. We told them what was expected of them. We stated what was needed at that time.
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