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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 had started another answer until I read further and saw that she no longer leaves her bed and is soiling herself but able to clean up? Start by telling her things need to change or you will no longer be able to care for her in your home. 1) She must get out of bed and use the commode or she will need to start wear diapers. 2) Get dressed daily and come out of her room. TV in her room will be turned off daily for 9am -7pm. 3) Shower 2x week. 4) Take all medications the Dr. has ordered. Once she gets past these set another set of goals. 1) Come to the table to eat one meal daily. 2) Go outside daily even to walk to the end of the driveway or sit and get fresh air. 3) Move from using the commode to using the toilet, commode is only available during the night. What can she help you with while sitting, snap some beans, match socks, set up a puzzle to work on. Stop waiting on her. Tough love is hard, I’ve been there with my own mother and seen my SIL dealing with my FIL. Look into a social day program for when she gets better, get her out of the house and give you a few hours to take care of you.
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yice., you should respect her wishes as long as she is not smelling.

It's perfectly fine just doing spit baths.

Im sure you have a shower with a shower chair just in case it's too much to step in to bath tub and she just doesn't want to say. Sitting down in a shower chair with a hand holding shower nozzle is a better way to not fall.
As far as UTI's, talk to her Dr about that because it could be from her not drinking enough water.

The more pills you take, the more water you need to drink.

She should be able to clean herself well enough without soaking in a tub or taking a shower.

Tho you should try to find out the underlying reason.

Hand to stdp over the side of the tub.

Afraid to fall.

Think it's too much trouble.

Not have a walk in shower or a chair to sit on in the shower.
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Boy, if you think you’ve got problems, wait till she does get a UTI and then see how difficult life gets for both of you! I just went through this with my 72 year old wife who’s in a MC facility. It was HELL on everyone. You MUST keep her clean!
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Hannah16 May 2020
Your comment is lecturing and not helpful.
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Hi,
I just want to say that I know exactly what you are going through.

My mom just turned 94 and I've only kept her going through sheer stubbornness.

My problem is besides having controlled diabetes, my mom is fine, old and slow, but fine. I can't stand the idea of her just giving up and deciding to let go.

She gets in a funk and flat refuses to get up out of bed no matter how often I tell her, stomp my feet, cajole her, beg her, she'll just say "leave me alone."

She just had therapists release her two weeks ago and she's now moaning and groaning with every movement because she stays in bed until she's stiff. She tells the therapists "I just have to do it," but when they leave she falls back into old patterns.

I will say that the worst time it happened after struggling with her for four months, she was finally admitted to hospital with constipation. At that time it had been 12 days since she went. In the hospital it took another 6 days and who knows how long before she'd gone without.

This last time it was a UTI and me and the home nurse even discussed it but she had NO symptoms until finally she acted kind of vague, so nurse took in a urine sample.

I think if you're asking the question, then you are doing all you can, and more, for your mom. If you are managing without losing your temper or making her cry, then you are doing well.

I tell my mom all the time that safety comes first and nothing overrides safety. Cleanliness is part of safety so she doesn't get sick or bed sores. I've told her I will get arrested if (for example) they (?) find her in a wet gown in wet sheets because she's too lazy to get up. I tell her that's elder abuse and it's my job to take care of her. Sometimes it works but not too often.

Can you tell I am not so good at holding my temper? I try and try. Then I try to be extra nice and sometimes, I try to leave her alone but I can't wrap my mind around just fading to death. Not on my watch!

She's 94 and if she starts slipping again like I sense she is, I may let her. I am only propping her up until the next time. I've given her her fondest wish. My great nephew is living here with us and he's doing ok, so she's fairly content at the moment. With his drug abuse I have to watch like a hawk but she worries about him all the time.

Anyway, good luck to you. I'm not being very helpful but I want you to know I feel for you.

Charlotte

PS I've been doing this for 12 years now. I live with her in her home.
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Hannah16 May 2020
Thank you for sharing your story - it is so comforting to know that there are others going through similar things. Yesterday was a beautiful day here and I tried hard to get mom up out of the bed to come sit on the porch or just to the living room. She refused in a very nice and polite way. She just doesn’t want to which is so bizarre to me. So I put up all of her shades so at least she could see more of the beautiful day outside and the goings on around the farm. (Her room is very sunny and has 5 windows so usually a couple of the shades are down. ) I will keep trying to muddle through this and do the best I can. I wish you good luck with your mom❤️
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Edit - Good that she is STARTING on the med.
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Part of caregiving is knowing when to overrule your loved one, just as you would a toddler who decides to do something dangerous. To me, this is OK as long as it's done in a kind, loving way. Older people, for a variety of reasons, don't always make the wisest decisions when it comes to their own care. So that's when you step in.
I'm glad she has decided to take the anti-depressant and bathe. But just remember that as she gets older, the chance of similar things happening again is very strong. If she's going to be living in her own cottage, keep a vigilant eye on her because she's likely to surprise you with what she tries to do. I would recommend a camera like those used to monitor babies from a different part of the house.
Case in point: I know of a 92-year-old lady who decided that her chandelier needed cleaning, so somehow she climbed up on a chair. She was standing on top of the dining room table and was cleaning the light fixture when her daughter-in-law walked in on her. She swore that what she was doing wasn't dangerous because she had been doing it for 60 years! But what do you think?? Yes, me too! And she definitely showed a lack of good judgement.
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Hannah16 May 2020
Thank you for your advice ❤️ My mom will never be alone in the cottage. I completely understand what you are saying!
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Hannah: Good that she is stating the much-needed depression medication. Yes, she does need to keep her body clean as you already knew via ordering the bath wipes.
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Hello everyone
thank you so much for all of your suggestions! We are doing ok. My mom has agreed to take the antidepressant and we started that today. I know it will take several weeks to see any change if at all. Another development is that I ordered from amazon the wipes that are a bath. 8 wipes and no rinsing. She has agreed to this. She is very firm that she doesn’t want a stranger coming to bathe her. So we will do the wipes bath together and see how that goes. I feel that I need to respect her wishes for now. We are in the process of building a small cottage on our farm for mom and it will have a handicap accessible shower. I already have the shower wheelchair . I have been talking to her about this and how easy it will be for me to help her shower and get clean. My dad was her life for nearly 60 years and I know she misses him. We talk about him and have pictures of him in her room. She is surrounded by her loving family me hubby and 2 grands 20 and 24 years old. This Covid situation has set her back as she has kept to her room to avoid direct contact will all except me. There has been much less exercise and she has gotten so much weaker. We have done a telemed appointment with her doctor so she is aware of everything going on.
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NeedHelpWithMom May 2020
They are so modest. It takes time to get used to having others help. You are so kind and loving.

Things don’t happen overnight. You’ll figure out things as you go along.
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The poor woman is still grieving her husband!

I know about that because my husband died on September 2nd last year, and I went into a 'fugue' state for over six months - I still cannot remember what I did in that time. But I still continued to run the household, drive my car, etc etc.
However, I can relate fully to resisting the efforts of other people (even daughters, of which I have three who all live within 3 miles) to being set to live up to someone elses expectations - I would resist strongly indeed. So far I am fit and well at age 72, but my mother and grandmother lived to 99 so I have probably many years to go .........
I think that at least half of the writers in this stream need to re-evaluate what they are proposing - would they like to be treated thus, in their aged frailty and possible confusion from dementia? I think not.
As for bathing - it is less important as we age, the body does not sweat anywhere near as much, the main problem comes from incontinence, which can be dealt with by wipes. Kind words and encouragement should ensure a sensible routine, but surely it can be less inflexible than expressed in this forum!
Also - I had to make some adjustments to the bathroom to feel secure, because I was not happy about stepping into the bath - I was afraid of slipping. I also have a shower in the downstairs cloakroom, but I prefer a bath, being a Brit!
I found that the people working in carehomes are brilliant, and you could do much worse than getting advice from them.

Best wishes - Emmdee from the UK
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Hannah16 May 2020
Thank You for your advice- it is much appreciated!
love from Virginia USA
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It sounds as though you have issues, but her mental competency is not one of them. Have a talk with her listing all of the problems she is creating. Make a schedule for things like exercise and showering and let her know these need to happen because if she continues to lay in bed, there will come the day she cannot walk and you cannot take care of her at that point. Meals will be served at the table and she is expected to sit with you. I would also encourage her to give the meds a try, but you may not make any headway with that.

If she has arguments about these things, ask her if she would prefer to go to a facility where people who refuse to do things are just allowed to lay around and slowly lose ability to do anything at all. You can accommodate either your house rules or her choice if she prefers to live somewhere else.
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Hannah, how are things today?
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Hannah16 May 2020
Hi Barb
i posted a reply to everyone (I think)
Can you see it? Thank you for your concern. This forum is wonderful ❤️
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Please, please treat older people as children only if necessary. Give B12, magnesium from foods, and sensible common sense things at least a week first to see if the person improves.If ther damage is not permanent yet,you may see amazing improvement. love to all
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Please remember that not all ols people turn back into children. they do not all develope dementia. Those who do are sometimes suffering medicine caused malnutrition. Some so called meds such as statins drain nutrients from the body thus causing nervous system problems of all kinds. I am not saying that all mental problems are caused by malnutrition. I am just saying that often they are.Deficiencies in B vitamins especially B12 and in magnesium or other nutrients cause terrible damage especially to older people.These things need to be researched and investigated.Love to all!
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God bless you my dear! You are doing a lot! Your mom was naturally grieving deeply and not eating well. You probably saved her life.Amazingly, even in her deep grief and possibly depression, she did know enough to refuse antidepressants. Please respect her choice. They do more harm than good.To prevent UTI's, just have her drink a cupful of cran/grape juice every day.Try to insist that she have regular physical therapy every other day if at all possible. If her doctor approves, give her a sublingual B12 every morning. That will do wonders for depression and or any other nervous system disorders.B12 is very safe and very effective in treating malnutrition caused nervous system disorders. Both you and she should eat a lot of magnesium rich foods every day such as nuts, seeds, and spinach.Possibly like most very ols people, your mom has developed very fragile easily damaged skin. That may be why she is afraid for someone to bathe her. Antiseptic baby wipes might be helpful.I am so glad you are trying to respect her. She must not be rubbed and or scrubbed vigourously. because tiny almost invisible wounds in her skin might cause infection to develope.I am 86, strong, healthy,med free, and pain free. I threw away prescriptions for lipitor, fosomax, and thiazide when I was 62. That is why I am so healthy.I am not saying everybody should do what I do. However, it is best to avoid as many meds as possible. God bless you
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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 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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Hi , I know exactly how you feel , my mom broke her leg several years ago , she wouldn’t walk after that she was too afraid of falling. I took care of everything after that. After ahwile she said no to everything I asked her to do, the showering was the biggest issue I did the best I could with the rinseless wipes that u heat in the microwave. She screamed at me anyways. She got progressively worse, she got the flu and refused to eat or drink or take her medicine one which was an antidepressant the doctor put her on. I did all I could but in the end she passed away 2 weeks ago. I feel I should of fought more to get her to do more., but she was 84 and stubborn to the end. If you have the resources to hire help, I would do it. I wasn’t able to. She won’t fight someone she doesn’t know and will do what they ask. It was the hardest thing I had ever done the daily fighting, but I’d do anything to be doing it right now. This may not be helpful , but I understand the situation and wanted you to know to do anything you can afford to do. Best wishes to you and yours
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Sendhelp May 2020
So sorry for your loss, Angel.
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Lots of great ideas here! Since mom is willing to PT for her PT, but not for herself, do you think mom would talk to someone about her age if they showed up once a week (with safe social distancing, of course). Not with any particular plan of what to talk about in mind, just to be there. The other person may or may not have been through the same things, but your mom may find some comfort/relief in having someone her own age around regularly. And it sounds like she may comply if it's someone outside the family who shows up and there's social expectation of interaction. Just a thought. Best of luck.
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First, you’re doing everything you can. You’re Mom just lost her life partner - that grief doesn’t go away quickly. When my Dad passed away, my Mom went through a multitude of emotions that lasted over two years.

Unfortunately, for me, the bathing issue never changed until my Mom moved into assisted living. It was part of the services they provided. When I told my Mom she was paying for it so she might as well do it, she did.

One last thing, my Mom doesn’t respond well to me asking her to do anything. I think the issue is that our roles are reversing, I’m taking care of her instead of her taking care of me. In my mothers case, it’s her way of maintaining control of her life.
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It appears you mom is depressed. She automatically says "no" to everything since she feels sad - and maybe slightly suicidal. Her resisting good activities may stem form a wish to stop "being" or missing her hubby. I suggest you stop asking her "yes/no" questions. Instead of "do you want a bath" try "which soap/shampoo would you like to use for your bath now". Instead of "do you want to do your exercises" try "would you like to do your exercises before or after lunch". Instead of saying "will yo take your medicines" say "which juice would you like to drink to take your medicine". Don't give options on activities that she needs for her health and safety. Allow her some choice on timing and for preferences (clothes, drink, tv program...).
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Caring for your own elderly parent can be an emotional roller coaster most of us are not prepared for. We do not have the training medical personnel have. However, we do know our parents and we will care for them out of love and always have their best interest at heart. You are not in this alone. There are people out there that can give you needed guidance. You can also get a second or third opinion if their advice doesn't feel right or you don't understand. Communication is Key here, both with your parent and with medical helpers.

UTI's are nothing to ignore. They can cause damage to her kidneys if left untreated. Push the water, AZO or cranberry juice. Have the doctor check for infection. At her age, an infection can cause her to become very contrary mainly because of the infection. If she won't go to the doctor, there are doctor's who do make housecalls to the elderly. It's not fun to have a catheter inserted to get the UTI test done if she is having trouble going to the bathroom. Start with her family doctor. Have them do the UTI test and decide if she should be recommended for additional help through Medicare or Hospice. Once Hospice takes over, so do their doctors.

A transported chair might be helpful if she is weak. It's like a wheelchair, but not as heavy. Transport chairs have 4 smaller wheels. They are great for the home. You can buy one at a place like Walgreens for $100-$150. We had both, but the wheelchair was too heavy for me to take in and out of the car and banged up the walls in my home more from the feet rest. We would wheel her to the table for meals 3 times a day and she didn't have to move out of her chair.

You are the decision maker and you should get a Power of Attorney for both financial and medical if you don't already have one. You only need it if she is incapable of making decisions and you stay in control of her care more with the medical world.

When you Get to this Point:
My mother got to where she couldn't care for herself.. Diapers were hard for her to adjust to, but helped in her care. Go to the medical supply and purchase several large pads for her bed in case of accidents. She received sponge baths twice a week and had her hair washed once a week. My mom had different concerns and she was older, but once they reach a certain point, these are some of the things that are needed.
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KaleyBug May 2020
My moms on Hospice and has been since before Christmas. They can still see their primary care doctor, if the diagnosis listed is not the one they are put on hospice for. I found the washable bed pads on Amazon to hold up really well and cost less then at a Medical supply store
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I totally understand what you are going through. I'm in your shoes. But my mother is in her middle stage of dementia.
And she too doesn't want to do anything but sit all-day in front of the television.
She has a good appetite, and good health, besides her High blood pressure.
I'm the only one in the house with her.
Is not easy, she's not an easy person either. Her anxiety is driving me crazy!!!
I've been doing this for almost 5 years now.
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BeyondRetiremnt May 2020
Find a caregiver, Day Stay at a senior health center or look into something like Care.com. For your own mental well being. Take a break now and then.Even an afternoon to run errands alone is a mental break. If you have siblings, ask them to take her for the weekend now and then. She's their mother too. Tell them you will break everything she needs and show them what to do. If she ever on Hospice, you can request 5 days of Respite Care which is covered by Medicare. Go on a trip or stay home relaxing for a few days, but you need that rest too.
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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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I see some people have suggested a hospice evaluation. Medicare has very strict guidelines on what qualifies for a hospice admission. And a failure to thrive is no longer one of them, nor is losing the will to live.
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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 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 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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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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Her showering should be a line in the sand if she wants to continue living with you. That's really nasty and unhygienic. What's a bird bath by the way?
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Hannah16 Apr 2020
are you in a similar situation with a parent?
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Have you talked to your mother (in an open-ended way) about the fact that she seems to not care about anything anymore, including pleasing you or cooperating with household routines?

"Mom, I've noticed that you dont get up anymore."

"You seem to no longer want to get dressed".

"I was reading the other day that one loses muscle mass when you dont walk much".

Make these neutral statements, not all at once of course. Just fairly neutral observations.

Write down for yourself what her responses are.

Is she passive? Actively not caring? Sad?
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Hannah16 Apr 2020
She is very passive and has always been like this. She has hardly been out of the bed since she came to live with us last September. She used to get up and walk around a little bit but that stopped weeks ago. Her sister came to visit and she came out to the living room and sat with us for a few minutes. That was the only time and that was last October. She did not come sit with us to open gifts at Christmas or for the 4 birthdays that have come and gone. She will not come sit at the table and I’m don’t thinks she is able at this point. She always apologizes that I have to do so much for her and thanks me every day but has no motivation to help herself out of this situation. Her doctor prescribed antidepressants but she refuses to take them. I am attending to her every need as she is so weak but I’m not sure how much longer I can do this. Especially if I have to now dump the bedside commode several times a day. I have not had any respite from this since December when I had a week off when my sister came to relieve me. 24/7. Thank you for listening.
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So, who prescribed the antidepressant and why wont she take it?

Has she had a neuropsych workup? I'm wondering if shes had a stroke that didnt get noticed (it happens) and has developed some cognitive issues.

(Sometimes falls and result of a stroke; they dont show up on imaging). If she has not been a terribly passive person in the past, I would start from the assumption that something very major has changed.

As to hospice, remember that the criteria has changed, at least in some states. It's a way of getting comfort care for folks who are no longer interested in treating anything that might come up.

I would schedule an appointment and arrange for them to come to your home. Dont tell her until shortly before the appointment and dont cancel it; this is a service for YOU to get help with your mother's care. You need to find out if she is eligible so that you can THEN have the discussion about whether she will agree to the services.
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