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.
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.
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.
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.
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.
Things don’t happen overnight. You’ll figure out things as you go along.
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
love from Virginia USA
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.
i posted a reply to everyone (I think)
Can you see it? Thank you for your concern. This forum is wonderful ❤️
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.
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.
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.
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.
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.
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 :)
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
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.
"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?
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.