moms health declining, may have to send her back to a nursing home

Hey everyone,

I just came on there to vent and hear (or should I say, read) from the voice of others. I posted about this a while ago, but will give a brief intro. My mom, back in Jul. 2016, had an emergency stomach surgery. She had a hiatal hernia that grew large and cut off the blood supply to part of her stomach. They had to cut out half of her stomach, disconnect her esophagus, and put her on a feeding tube which she remains on to this day. She almost died from the ordeal, but after months of hospital visits and almost a year in the nursing home, she was able to come home and fend for herself. She was walking and even driving again everywhere.

She's struggling with nutrition being on a feeding tube and dropped to 80~ pounds. We believe she's lactose intolerant and also may have a gluten sensitivity, so it's hard to find the right food for her to take in the feeding tube. On top of all that, because the chemistry of her stomach has changed from the surgeries, she doesn't always get all her nutrients.

This past month has been REALLY hard, though. She lost almost ALL of her strength due to the lack of nutrition and can no longer get up out of her chair or even off the toilet on her own. And well, this is starting to become a massive burden on me. This whole freaking ordeal has been. Before all this happened, I was looking at moving to the sunny west coast for a job. Now I'm trapped, living with her and my dad trying to take care of her. And I'm getting fed up with it. It wasn't so bad when she was able to do things on her own, but now she can't. To add more fuel to the fire, my dad is a lifetime alcoholic and he is just making the situation even worse. He's a whole other story...

This stuff in the past month, it's just getting too damn much. I have a sister but she has a house and kids of her own to deal with. My mom constantly hounds me for stuff, get me this, get me that, make me coffee, help me up, help me with my medicine, pick me up this, help me adjust my seat cushion, pull my pants up, I mean, it's getting nuts, I can't walk in my living room anymore without her asking for something! She also keeps putting the thermostat up to 83 degrees and gives no F about how anyone else in the house feels. I can't sleep in my bedroom anymore because it's astronomically hot upstairs. I sleep on the couch in my office, and every other day I'm woken up to nurses talking loud super early in the morning that visit her.

It's getting annoying and severely exhausting dealing with all of this. I just can't take it anymore. I try to get her better, too, making food in the blender and things, help inject her medicines. Mixed baby foods, protein powders, etc. help her exercise. Finally they got her a new feed to try today. But still. I have work, the dog to take care off, and I'm finishing my last semester at college for my bachelors which I already delayed a year when she was in the hospital in 2016.

I am now faced with the dilemma that I may have to send her back into the nursing home, which I hate to do (i'm her POA and can make all those decisions for her health). It's getting too much for me, and I'm also not a nurse to be doing some of these things. She has visiting nurses and therapist, but they only come every couple days for 30~ minutes. Anyone here ever deal with this type of thing before? It's just, very burdening. I feel guilty for getting overburdened with it, but I can only do some much. A going on 28 year old man doesn't want a future where he has to take care of a senior citizen forever. I love my mom, but I can't be a round-the-clock nurse with the rest of my life going on. I also worry about her sitting around all day, getting bed sores, the progress is moving so astronomically slow to get her better. The nursing home was only 10 minutes up the street, I visited her every day, and I really think she should go back until she gets her strength back. One of her main nurses today told me to send her to the hospital if she gets worse, which I intend on doing.

I miss the good old days on here you know; coming on here posting about dating, women and things. I'd rather be talking about that then my mother's health. I can't even think or imagine that part of my life happening anymore now. It definitely feels over if it hasn't already. I don't think I've even glanced at a woman in almost a year, maybe since last valentines day. All of this stuff with my mom just makes me feel like garbage and I don't feel motivated to do some things anymore oer it. I don't even talk to some of my friends anymore, I can't have people over anymore with her the way she is. I'm just tired.

You're, quite naturally, suffering caregiver's depression.

"Caregiving can be physically and emotionally stressful. To provide the best care possible, you might put your loved one's needs before your own. In turn, you could develop feelings of sadness, anger and loneliness, as well as guilt. Sometimes, these emotions trigger caregiver depression."

https://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/caregiver-depression/art-20047051

You can read more by Googling "caregivers depression" and what you can do about it. The Mayo Clinic suggests taking time for yourself, staying in touch with friends and reaching out for help. For example, the hospital where your mother is being treated out of might have weekly group meetings of caregivers where you can connect with other caregivers.

But I would just comment that from what you describe, mom should probably go back to a nursing home if that's at all possible.

Have you looked into the option of having a caregiver come into the home once a day instead of every few - has a doctor determined that she is losing weight because she is not properly caring for her feeding tube - not doing what she is supposed to because she is neglectful or because she doesn't have the know-how or is this a general predicted decline?

I think that you should not tell mom "you need to go back to the nursing home" - i think you should have someone come in every day and when it gets to the point the visiting nurse talks to her etc, about it --- its better that its mom's idea or something she is in agreement about vs her thinking its you.

I also think that if mom goes to a nursing home, you should not move away if she doesn't have any other family.

My mom constantly hounds me for stuff

she is not hounding you. She genuinely can't take care of herself.

Can you talk to your sister and brother in law - have an honest conversation that you need a break - that you would like them to come over and sit with mom at least once a week - whether they get a babysitter, its your sister while the kids are in school or she comes when hubby is home on the weekend to look after the kids. You need help. You can't do this alone. She can't be expected to take over, but she needs to participate. She needs to see how mom is so when its time to put her in a nursing facility until she can take care of herself again - so that she is not railing against you and disagreeing

Oh, honey...I really feel for you. Been there, done that. She is really better off in a nursing home at this point. All of this is on your shoulders, and what happens if you have a breakdown She needs help that is beyond your capacity, and I can see that you have been knocking yourself out. What are you waiting for? Let us know how it goes, sweetie. :( chi

Take her to the hospital and from there you can get social workers involved to guide you in what services are available to you and her. I feel for you... you've taken on too much.

Hey everyone,

Thank you for the replies as well as others that have messed me outside of here. Well, I have some crappy news regarding this. The doctors called today; her bloodwork came back bad. He wanted her to go to the hospital to get that treated as well as the bedsore.

I called an ambulance and she refused to go. She thinks staying home another day is going to magically make her get better. I have her POA but it's useless. They wouldn't take her unless she cooperated because she is competent and alert. I called the doctor, they wouldn't do anything. This whole system is f'ed.I guess she would rather die. I don't think she's in the right place mentally but no one is listening.

The thing is, she can only continue at home if you support her. If you should become physically unable to help her yourself, she would have no choice but to go into the hospital. So....suggest that you get a broken arm. (Not really, of course)

Get an arm sling and there you go. Everything is relative, and when she cannot depend on you, what other choice does she have? :eek:chi

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Hello ENA,

I wanted to post another update for those that care or have been following. She put up a big fight over it, but I got my mother to voluntarily go to the hospital. I was prepare to do a 302 if she wasn't, because this is a life or death matter. I am suppose to care for her when she is unable to care for herself. It can be such a challenge to get someone committed to a hospital. She definitely wasn't herself and I think there needs to be less resistance in such scenarios.

They kept her overnight and she will most likely be put into a nursing home again once they fix her nutritional problems. They did lab work at the hospital and said her electrolytes were very low and her nutrition was completely messed up. She's now in the right hands to get her health back on track.

By doing this I potentially avoided her health declining even more or her even dying. That was the reality of it, and I don't think I would live with myself if something happened to her and I didn't do everything I could to make her go to the hospital. I got some much needed rest and peace for one night without having to constantly care for her. One the hospital is done with her, I am going to do everything I can to have her put back into the nursing home until she is back to normal.

Only sad thing, the dog misses her. He was sniffing her chair at night wondering where she is.

Sometimes you have to use the only card that you have, and that is to threaten to pull out of the situation or feign some reason why you cannot do the care giving anymore. You did a good job! Now she is in a place where she can get all the professional help she needs to get on the right track. How old is your mom?

I am glad that you are finally getting some rest, sweetie... chi

Sometimes you have to use the only card that you have, and that is to threaten to pull out of the situation or feign some reason why you cannot do the care giving anymore. You did a good job! Now she is in a place where she can get all the professional help she needs to get on the right track. How old is your mom?

I am glad that you are finally getting some rest, sweetie... chi

Hello chitown,

My mom is 65 years old. And another update; she is starting to improve and her bloodwork is returning to normal. BUT... she still seems a little, I don't know, delirious. Like, she is competent, and can think, and even pay bills. But she keeps insisting that nothing was (or is) wrong with her. She INSISTS that the hospital is making her worse and she should have stayed home. She is accusing me of putting her in the hospital on purpose. And it's getting me mildly upset to the point I hung up on her today on the phone.

My neighbor who is an ex-nurse and also helped care for her over the past several weeks told me not to worry about it. She said she is still gaining her nutrition back and things (which she is, and they are feeding her very very slowly). And until things are back to normal for her, she may be slightly loopy and confused. She's not going to gain her strength and normal behavior back in a couple days.

Also, she is driving the nurses at the hospital nuts. So, she can eat food still in her mouth, but it comes out of a plastic bag that has to be dumped. Well, because she's so low on nutrients, she's getting these very very severe food cravings. She will eat an entire bag of oreoes in one sitting. She keeps wanting to send me and my sister on grocery hunts to buy all this crap for her. And she kept bugging the nurses every five minutes to empty her feeding bag from eating so much. This morning, they took her food away (which I found funny) and she was furious, saying they are being mean to her and things. So, it makes me feel less worse now, that professionals even got tired of her. She's blatantly taking advantage of people's kindness and patience, which she's not doing on purpose.

She was doing the same thing to my 81 year old dad at home, making him dump her bag constantly (and it's gross). So it's good that she is in there. I hope she eventually gets her competence/understanding back, she knows somewhere in there I would never intentionally put her in the hospital (or a nursing home, which she will be going to when she leaves the hospital). In fact, once they told me to take her and I didn't because there was nothing wrong with her! But this time was different; the lab work, her poor physical health. She needed to go. And I don't regret it one bit, because it saved her life.

Hi musicman, I just saw your story today, and got caught up. I'm so sorry for what you're going through, what a huge burden! It's great that you convinced her to go to the hospital and that she is improving. From her general condition, it doesn't appear that she should return home unless she has full-time access to a care assistant or nurse. It must be hugely stressful to have those decision making powers and to struggle with knowing what action to take. I have so much sympathy for you, and hope you don't wear yourself out in this process.

I'm happy to hear you got some rest - what everyone else posted above is so important - caregivers often burn out and rightly so. You're struggling to live a normal life with work and school, plus you have a sick parent and an elderly alcoholic parent and you're primary caregiver for both. Hang in there, I'll be sending you positive energy. ((hugs))

Hi musicman, I just saw your story today, and got caught up. I'm so sorry for what you're going through, what a huge burden! It's great that you convinced her to go to the hospital and that she is improving. From her general condition, it doesn't appear that she should return home unless she has full-time access to a care assistant or nurse. It must be hugely stressful to have those decision making powers and to struggle with knowing what action to take. I have so much sympathy for you, and hope you don't wear yourself out in this process.

 

I'm happy to hear you got some rest - what everyone else posted above is so important - caregivers often burn out and rightly so. You're struggling to live a normal life with work and school, plus you have a sick parent and an elderly alcoholic parent and you're primary caregiver for both. Hang in there, I'll be sending you positive energy. ((hugs))

Thank you for the positive energy. Situation Sunday was the same as the past few days; excessive hunger, and still blaming/accusing me of putting her in the hospital. She is completely and utterly convinced that there is absolutely nothing wrong with her.

I have called the nurses on-call tonight and they are going to speak to the doctors and maybe get a counselor to talk to her about her mental health.

Hang in there, sweetie! chi

Hello everyone,

Thank you again for all the kind words and replies. For those that have been following. My mother was discharged from the hospital a few days ago and send to a nursing home only a few minutes up my street. She is happier there than at the hospital, as one of the nurses she made friends with from last time and she likes being closer to home.

I have to say though, she's not doing well. :moody: In the past 30~ hours, she has gotten extreme swelling in her face and legs, which the doctor thinks could be congestive heart failure. I believe he's doing some heart tests including an EKG on her starting in the morning (yes, the hospital did all of this as well, but he is checking again because this happened rapidly). The hospital mentioned to me this was possible due to her current state of physical health. If it's not that, possible kidney problems due to her severe state of malnourishment. She's getting more food in her now, but we also don't know if her body is absorbing all of it. Because of the type of surgery she had on her stomach, she doesn't absorb calories like a normal person anymore, and that is a problem, especially being on a feeding tube.

Her face is so swollen that she can barely open her eyes. I have to say, I noticed the swelling a number of weeks ago, very minor, but the past day it escalated. Additionally, she is a life-long sufferer of severe scoliosis. She's in constant, agonizing pain from it and at this point with her weak physical strength, she can't hold her head up anymore. Her head is pointed down to the floor all the time and her eyes are swollen so she can't see...

It's like, horrific to look at. I don't even know what to think or feel about any of this anymore. I thought the worst of this was all over in summertime and now she's in horrific condition. And you just feel so helpless about it, you know? I'm just glad I sent her to the hospital when I did, despite her (still) thinking it was a terrible idea. I think she would have died at home.

My sisters and I had to make this decision for my mother who lived completely alone although family were nearby. My mother is considerably older than your mother, but not sure that is relevant. My mother was born with a serious autoimmune disorder, and was in remission of that until she was in her early thirties - so she has been unwell since I was 11 years old. She has also had life-threatening asthma, a quadruple bypass, multiple operations and serious depression. We basically had supports in place to enable her to live as independently as possible for as long as possible, but eventually that was not enough. As well, her quality of life at home was not good in that she had to wait for nurses to come to monitor her heart and do some other things, but I can't remember exactly what it was. Then one day, she was taken to hospital and we knew she was now requiring trained staff to be with her 24 hours a day. It was like a miracle fell out of the sky though. My sisters had looked around at aged care facilities and they were awful, and the thought of sending our mother there was just terrible.

Then a vacancy came up at this beautiful place which is a lot like a hostel. She has a large room with ensuite and a balcony overlooking the sea. None of my other sisters lives not too far away and visits her almost every day. I live interstate as I have for a long time, but we speak very regularly.

It was very hard for her at first, but she has been there around 4 years and loves it. Yet another sister takes her out to restaurants regularly,mand one of my nephews is very close to her.

Nobody, especially a 28 year old can be expected to be a care giver for a long time as you have.

I do think it's possible though that as your mother is not that old, that maybe she will get well enough to come home at intervals. My mother is 81 years old (though she doesn't look it).

Since my mother has been at this place,bushes had a major stroke and wasn't expected to pull through, but she has and has done very well.

With regard to my mother, the key was in finding such a wonderful place for her. She says the staff are all beautiful. I think probably we just got lucky. One thing that does sound really selfish is that there was a sense of loss, at least for me. Mum had to sell her home to afford to go to this place. I go up and visit when I can, but it was strange knowing I could never go stay with my Mum again. In many ways, we were close. The "family home" which was actually a townhouse is gone now. Life is different, but it's what my mother needs and I thank God she is happy.

With regard to your mothers unusual eating obsessions, it does sound that they are related to her gastric surgery - and that is common. Do you mind me asking if your mother has a permanent colostomy bag? Yes, that can be unpleasant. Not a job I like to do and have worked many years as a Carer so something I have had to do every now and again.

I think you need to go get on with your life. That is understandable.

Ps. I have a son slightly older than you, and I would never expect or even want him to give his life and happiness up for me to be caring for me.

Yes, I agree with Silverbirch. It is easy as a caregiver to get all caught up in the role and to forget about yourself. I think that you have done a great job of caring for your Mom, and it is not important that she acknowledges that fact or not. You did, undoubtedly, save her life. Where there is life, there is hope. I hope that she continues her life having the best quality of life for her. And as for you young man....you need to start enjoying life a little bit more yourself; don't you think?

chi

Hey everyone, I just felt like posting briefly. My mom is still in the nursing home and is making progress slow as molasses. She's walking but still can't stand up on her own yet. I feel like I constantly disappoint her. She always gets demanding and wants me to bring things to her and I can't bring it all. Food, drinks, etc. She still has this mindset she shouldn't be in there, just makes me feel guilty about ever sending her to the hospital.

This week, I also had to send my alcoholic 80 year old dad to the hospital. He decided drinking was more important than everything and everyone around him. Got loaded and crashed into the living room table while I was a sleep, found him on the floor and had to call and ambulance. Just another uphill problem I have to deal with. He'll eventually end up killing himself or someone else and I can't do anything to prevent it from happening.

It was my birthday a few weeks ago, I turned 28. And I'm just goddamn miserable and alone now. All I have is my dog. Hung out with a few friends one day but that was that. I'm finally graduating college in summer, but it just feels pointless sometimes. This is already a hard time of the month for me, I always get disgustingly depressed over my birthday and valentines day. Now with both my parents messed up it's even worse.

Just so depressing, nothing to look forward to but people disappearing and dying. Quit karate a couple years ago after 16 years after the owners of the business took advantage of me. Don't care so much for music anymore, no success or recognition out of it, no one to ever play with. Tried doing stupid hobbies a couple years ago on meetup. Couldn't even make any friends, people just go to do the activities and then leave. Lol, dating life is a goddamn joke. Everyone is getting married around me. I couldn't get a date anymore if my life depended on it. All I got is work. I feel like if I wasn't doing meaningful work, I really wouldn't want to live anymore at this point. I don't know what I ever did to deserve any of this.

I think that you are a kind, young man and you no doubt will have a girlfriend....life has just got in the way, sweetie. Hopefully, you will see the light at the end of the tunnel soon. :smug:chi

Though it probably doesn't seem like it, it won't be this way forever.

I wish I had a great answer for you. Some people just get a bad deal sometimes.

This will pass, promise. . . Hang in there.

Thanks again for the replies. Things are still kind of tough. At this point, my mom is just totally disgusted with the nursing home. I guess, what makes things harder, is she used to be there for me to talk to. You know, about dating/women, with words of encouragement. Now, it's like it goes in one ear and out the other. No optimism. She seems to take it as complaining now and/or has something negative to say about it. She's just has this look on her face "to hell with your problems". I also don't want to dump my problems/issues on someone who's suffering in a nursing home.

In some ways, I feel like I don't have a mom anymore. :moody: It's just this person I'm related to that asks and demands things of me constantly.

I've been considering calling my insurance to ask if I can get a therapist to talk to. I both do and don't want to talk to a therapist. Not so much with professional life, at least in areas where it's important things are ok. College is good, work is good, I am responsible. I'll be graduating in summer. I'm learning another language. It's more so personal problems. Talking to people, getting angry, offended, depressed, and/or upset about the subject of dating. I feel like certain things trigger me over the subject. Sometimes I feel like the walls are closing in on me with dating, like I'm trapped in this whole.

I just wish I wouldn't take it so personal anymore. I wish I could sign up on dating apps/sites again and not feel offended or discouraged if people don't answer me. I wish I could feel like I did years ago, I don't know I had more optimism/faith in finding someone, a romantic side. Now I don't have that anymore. Thanks to people that have wasted my time and hearing "no" one too many times.