Mom worked till 81 when she became ill with Giant Cell Arteritis. It took not quite two years for that illness to get under control with medication. She has since been told that the disease is gone and no further treatment is needed and all her lab work is normal confirming the illness is no longer active. She has no medical history other than that and high blood pressure which has and still is always under control.

She stopped driving at 81 and was weakened by steroids used for the GCA. She became almost unable to walk distance. Going short distances causes shortness of breath and she walks on average per day, my best guess, about 50 -60 steps a day. She refuses to use a walker but has to use a scooter if she does any shopping, which is now very limited to only a quick trip with me to the grocery store.

The past few months she has had several UTI's, all clearing with use of antibiotics. She complains she is always tired, sleeps all night (sleeps well), yet sleeps during the day. Most days she is getting 10-12 hours a night, getting up for toast, then going back to bed for another 4 hours. When she finally makes it to her recliner she is napping on and off until she goes back to bed again for the night. She says she feels sick, blames it on her BP medication (which has not been changed), eats nothing I cook for her anymore (toast or donut for breakfast, cereal if that for supper?) is not a water drinker, shuffles when trying to walk, and I believe she is unable to get in the shower or tub (even though it is fully equipped for her to do so) and she refuses help. She tells the Dr at her appointments that she is perfect, that she doesn't feel like eating, but picks all day, and that she walks around great. When she hears me come home (we live together) she makes her way to the kitchen sink, grabs a towel, and tells me she has been so busy! When I call her out nicely on the excess sleep and zero activity, she denies it completely.. Says things like, "I was just laying on my bed resting" or " I walk all over my apartment".. I am at a loss. I feel like there is something more I should be doing! I try every single day to get her out of the house, most days she says no, it's too cold, it's too hot, maybe next week.. and the excuses go on and on. I am home full time to be here for her to do anything I can to make her life comfortable and keep her active as possible, and nothing I cook or any offer of assistance is shut down immediately. Her Doctor says "you're old" "of course you will be tired, I'm tired and I am only 58" "eat what you want" "you look fine" "sleep whenever you want" and he just don't seem to have any idea that what he sees at her visit is not the way she is at home. Pajamas or robes for days and days, hair not combed, teeth not in, etc. Any suggestions? I feel so badly, so helpless. Thank you!

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Update: Twice this week had my Mom in the ER for what I thought might have been pneumonia. She started with a cold, the cough got progressively worse, she was wheezing, and could not walk two steps without becoming so short of breath she would almost fall. (the flu and pneumonia cases here right now are extremely high) They did chest xrays, blood work, EKG, and said it all looked good. They gave here an abuterol breathing treatment while there and sent her home with an inhaler. They also suggested she see a Cardiologist.

This led me to think that maybe her deep fatigue could be related to an undetected heart issue. In speaking with a Nurse about my Moms symptoms, she said that they could be related to Congestive Heart Failure. (nausea, fatigue, shortness of breath especially on movement, lack of appetite, wheezing) The fact that her EKG's and pulse ox measurements are normal when she is laying down does not mean that is the case when she attempts to be mobile. I am thinking maybe a monitor for her to wear for a few days to see what her heart is doing during activity and a pulse ox trend might be needed. I called for an appt. with a Cardiologist as the ER recommended and she can't get in until early February. Because she is not getting any better and is literally not doing anything but going from the bed to couch, (and I know she is only going to the couch as not to alert me or make me worry) I am calling in the morning another Cardiologist office to see if there is any sooner appointments available. If need be I will take her to a larger more staffed ER and have a Cardiologist on duty look at her. The ER I took her too does not have a Cardiologist on duty so there was no way she was going to get looked at there, which is why they suggested we call one. I was heartbroken when I was bringing her home and she fell taking the first step into the house.. I cried myself to sleep, something I have not done in a long time..
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Reply to Caregivingjoys

It must have really shocked your mom to become ill, & even though she fully recovered from the GCA, I think it scared the heck out of her. (My mother wasn't herself after colon resection at age 75). It's tough to bounce back at 81, & if she would go to a 'talk therapist'(specializing in elder care), I think she'd do really well. It's something family can't do for her, she needs a pro to talk 2 about her fears. (I should take this advice myself).☺✌
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Reply to Tiger55

Maybe you need to talk with your mom.......let her know that you do NOT plan to put her in a nursing home but that she has to be honest with you! The older generation feels 'ashamed' that they need help, it's a sign of 'weakness' and yada yada. If/when need be, Medicare will pay for some in home help, whether she feels she 'needs' it or not. The stubborn factor is tough.......there's fear at play, plus loss of independence, all sorts of things. It's hard for them, but they make it harder for US by being secretive and wearing the Happy Face in front of others. I've seen my mother do this for decades......she still does it now, at 92, and the care givers & her doc used to think I'M the 'bad one' or the 'crazy one' because hey, your mom is FINE! Um, no she's not! Just a few days ago her mask cracked, and the nurse was shocked! She told the care giver 'this is the face her daughter sees ALL the time but the one we only get to see rarely." 100% true. Her doctor got to see her at her worst, as well, and realized in short order that she's in much worse condition than previously thought. In any event, your mom's doctor can administer a cognizance test to determine if she has dementia, and how bad it really is. You can easily Google 'tests for dementia' and you will see what sorts of questions are asked, etc. The UTIs will ALWAYS cause confusion and it's the first red flag for you to know there may be a UTI at play! Symptoms seem to worsen at sunset, which is why it's referred to as Sundowners syndrome. They can be fine all day and then get seriously confused in the evening. It's important to get a culture so the correct antibiotics will be prescribed. When an elderly person is incontinent & using Depends, the UTIs can flare up quite often, becoming dangerous if not treated (can turn into kidney infection).

Everything is fine until it isn't fine anymore........that's what I always say. My mother was fine until she got really sick in 2011, and it's been downhill ever since for her as well. It only takes ONE little thing to set them off, which is why we take preventative measures to avoid illnesses like pneumonia and shingles, which could easily kill them!

Best of luck to you as you navigate this difficult road; my thoughts & prayers are with you.
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Reply to lealonnie1

I agree with Shell 100%.......sounds like your mom is suffering from depression, which makes sense after the ordeal she's been thru. My mother was 84 when she fell ill with ulcerative colitis requiring 2 hospitalizations and a surgery on Christmas day to insert an IVF filter for a blood clot. After release, she exhibited the exact same behaviors as your mom is. She was ashamed that she had gotten sick.....and her generation's stigma with depression prevented her from admitting it. She'd put on The Face that all was well, but I knew damn well it wasn't. She lost weight from refusing to eat, moped around all day in her nightgown, didn't want to go out or see friends, etc. Her moronic doctor said she was Just Fine and I had to insist he prescribe an anti depressant, which he did. Wellbutrin 2x per day. She very quickly improved and was back to her old self in no time. I switched her doctor, shouldn't require a rocket scientist to recognize the symptoms of depression!

Best of luck!
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Reply to lealonnie1
Caregivingjoys Jan 3, 2019
Thank you. I am so glad to hear your Mom is back to being herself. What a relief not only for her but for you! I am calling my Moms Doctor today and running this by him to see what he may suggest. I am very concerned and at this point I am not taking the "old age" cop out he has been using. If he can't or won't do anything it will be the last phone call to him, and changing to another Doctor won't be a problem.
To me it sounds like depression. You should talk to your mom's Dr about what is really going on. If Dr just keeps saying things like, she's old she should be tired, and/or she is find than find a new Dr.

When we (humans) get depress we either don't eat or we go for sugary snacks! And there is never enough sleep in the world.

Prehaps taking her for a drive. Make her one of her favorite dinners. Try to get her to engage in one of her favorite things to do or use to do. I would also suggest talk therapy but something tells me she won't go for it. You should try anyways.

It sounds like your mom has been through a lot of life changes and a illness; although the illness is gone it might have had an impacted on her; along with not being able to drive, which is our way to freedom so to speak!

I would also suggest a routine blood test if she hasn't had one, just to make sure everything is good there.

Good luck!
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Reply to Shell38314
Caregivingjoys Jan 2, 2019
Thank you.. I have thought depression as well, but she really turns on the happy face and life is good act in front of the Doctor. I know it was hard for her to give up driving but we did let that be her own decision at the time. The car and keys were here for her if she wanted to try again, but won't. And there is no possible way she could drive now when she can barely stand for more than a couple of minutes. Her routine blood work has been good as well. I do try to make her favorite meals and as of late the answer is that she is not hungry, says she has no appetite. I do ask every single day if she wants to go out, anywhere, anything she would like to do, and I know she wants to, her body just won't carry her. I think she is afraid of falling or having an accident (she uses depends) and these two thing alone must make her feel so house bound. Her coworkers were always trying to get her to go places and she never went. She actually won't go anywhere unless it is with me at this point. When she was hospitalized for 5 days with the GCA they suggested she go to rehab for her legs at that time (2 years ago) and she adamantly refused, only opting to have the therapist come to the home when she realized it was the only way they would discharge her. Three sessions in at home and she asked for the therapist to stop coming, that she would do the exercises on her own, which she did not do..She is hiding lots from us that she can't do and I know it is the fear of ever having to go to a nursing home. She wants to stay home and that is one of the reasons we bought a home with an in law apartment even before she got sick, so that she would have a place to be if she needed help. She loves this house. She is also a bit confused at times lately ( something I have seen when she has a UTI ), although I don't believe she has a UTI now. She can't remember things I told her five minutes ago and can't follow a conversation where more than one person is talking. I do think there is more going on than anyone really knows and having a Doctor who attributes everything to "old age" is not helping anything. My Mom never was sick in her life with anything until age 81, and it has been nothing but downhill since. I know I am doing the very best I can, staying home with her every day, giving up a full time job to do so, and my husband is amazing in helping, not only bringing in enough to support this time I am home, but to help my Mom as much as he can too. He certainly has my back and does so much to make my Moms life comfortable. I worry about her not bathing regularly, not eating at least some nutritious foods, and the fact that she makes excuses for why she feels so sick makes me so sad.. Today she blamed it on a lotion and then on the ice cream. I just wish she would be up front and tell me what is going on so I can get her the help she needs so that she can feel as well as possible. I truly hate seeing her fail so much.

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