Anyone care for their mom or dad until the end at home?

elhijo

Hello,

I'm caring for my mom who is 91. Two hospitalizations in two weeks since the start of this month. The last time she was hospitalized was in 2018. She not someone who goes to the hospital often. Some ER visits here and there but we're not one of those people you see in the doctor's office constantly nor ER constantly.

First hospitalization aspiration pnemonia. Second time, the doctors really don't know what it was but they thought she had aspiration pnemonia due to Covid. Who knows how we got Covid since she and I don't go out (I work at home). I think she got it at the hospital during the first visit and then I caught it from my mom but no one really knows.

Thing is, the ALZ support group I attend leans very "ALF" and "facility". I kind of feel like an alien sometimes. And so it was the hospital where they kept pushing hospice even though I could see my mom was not that bad. I understand if she had something like terminal cancer God forbid, but she didn't. And there would be no physical therapy or occupational therapy if we went the hospice route. So how is she supposed to get better? Being cynical here, but let's face it, aging and dying has become big business in this country. A hospice patient can be worth thousands upon thousands upon thousands of dollars and I'm not so sure of the quality of hospices in my area. Seems like a money making machine as burials have become.

So anyone traveled this really long road until the end, caring for your mom and dad at home without hospice or tubes all over the place? I know people like this must exist but the current model of elderly care, especially for later stages of dementia, is institutionalized care of some sort. I know hospice can be done at home, but after reading some very, very bad Google reviews of the hospices where I live (overworked nurses, promises not kept, patients suffering, etc.) I'm very leery of having anyone tend to my mom besides me.

The good news is that after the 2nd hospital stay, mom is much stronger than she was before. I'm still worried about her aspiration and am thinking of hiring one of these mobile doctors who comes to the house to visit once a month. But again, not sure about this service as I don't think you get the same doctor each time but the good thing about it (as far as the rep said) was that all services, x-rays, etc. can be done at home. Anything to avoid the hospital/medical center and avoid another Covid bout.

Sorry for rambling some. Anyone who took care of his/her mom and dad until the end at home I'd appreciate any words of wisdom you may have to share.

Thank you for reading my post.

ImMaggieMae

I’m taking care of my husband at home and intend to continuing to do so. I don’t have any words of wisdom to but agree with what you’ve written and would like to share ideas on caring for a loved one at home.

DCCEPEK

My husband and I, 65 are doing our best with his Mom. It's hard we both have hurt our backs and struggle to do what our generation thinks is the right thing but truth is ITS KILLING US! she's blind deft incontinent and walks circles all day medicated to the hilt. Not very verbal unless she's in a mood and then it's on for hours sometimes days. Days are long nobody comes around but hospice once a week telling us how good we doing. Ugh...so depressing. I truly miss being a wife. No grands coming as most are afraid of her. My own mother on death's bed. This world is getting to be too much. If you can afford help please take it and do it for your love one! They need you as you are not a caretaker. Just my thoughts. A very tired caretaker with tears flowing. Blessings on your journey

elhijo

https://alzconnected.org/discussion/comment/195208#Comment_195208

Feel me to send me a connect invite and I'll be happy to connect and share some ideas. Thank you.

elhijo

Thank you DCCPEK for sharing and being so vulnerable. I apologize for just checking this now but the new site doesn't seem to be as active as the old site. My mother is better but her pneumonia, or what **looks like it** is so weird. Took her to the ER around January again, she kept on coughing this thick, clear, phlegm. Oddly enough while we were in a very clean and very private ER room, she slowly quit coughing and the phlegm went away. The doctors did all sorts of tests and said there was nothing wrong with her. This was the same woman than a few hours ago had coughed and coughed with thick liquid clearn sputum coming out. No idea. Today it was the exact same thing again. I'm thinking my mom has a milk allergy, a strong one, and all the cheesecake I've been giving her finally got to her system. She does not eat/hates most of what I cook so it's hard to get her fed. But she is strong, gets up from the bed, goes to the living room, turns on the tele, etc. So her ALZ is not the aggressive kind (anymore).

Today I got scared again and I decided to just filter the air and made the apt. super cold, with the AC at 71. Slowly my mom's coughing went completely away. Turned it down some more to 68 and no more cough. I've read that when someone coughs like that it could be allergens due to bacteria, viruses, molds, etc. And a home health aide told me one of the reasons they keep the AC so low in those places is to kill bacteria, viruses, etc. which don't like cold AC temperatures well. I'm lucky in one respect where the apartment building where I live is under 10 years old, so everything works. Heat/AC/washer/dryer, etc. If I had a home or was renting in a cheap place, I couldn't handle the AC breaking down and things of that nature - on top caring for my mom.

I've given up on help for right now. It's so weird, my mom gets stronger and more lucid as she ages, it's like the Alzheimer's is getting better. She has her bad days but it's not a constant thing where she doesn't know who I am or where she is. If I could just lick the pneumonia or pneumonia-like symptoms I'd have it beat. Something tells me this could also be psychosomatic, yes, the milk allergy, and allergen to dust or something, but I can't shake the feeling about some psychology being at play into this.

Took her to the neurologist around November to see if he had ever heard of the brain causing this thick phlegm coughing episodes, and he didn't know of any. So much for that.

Thank you for sharing DCCPEK, you can send me an invite too.

You and your husband have a wonderful and hopefully quiet, safe evening alongside your loved one. I know it's hard.