Anyone Ever Deal with Sick/Elderly Parents?

[tedtan]

My mother has had some health issues lately and it seems that she is almost at the point where she needs a nursing home or in home nurse to help keep her sorted out, but she does not want either. Twice lately I have gone to her house and found her unconscious, lying on the floor and had to call for an ambulance to get her (back) to the hospital. What seems to be a big part of the issue is that she needs to take meds and eat at specific times throughout the day and if she misses a dose or meal, it throws her off and she spirals downward, missing the next dose/meal and so on.

My sister just took a vacation with her family and took our mother with her. She was able to help keep my mom on schedule, taking her meds and eating properly and she seems to be doing great now that they’ve been back for a bit. But I‘m concerned that she will miss a dose of meds/meal and we’ll have to repeat the unconscious/ambulance/hospital routine.

So my question: if staying on schedule continues helping her, how can we keep her on schedule when we can’t be there with her 24/7 and she doesn’t want in home healthcare providers and refuses a nursing home? Calling her to remind her, keeping her motivated, etc. seem to be helping for now, but am I missing something more that we can do?

 

[Randy]

Sorry to hear you're going through this.

What you're dealing with is not uncommon, as people get older and there's the fear of "what comes next" when you're talking about leaving their home for assisted living or in-home care options.

You say she "doesn't want" in-home care, but what are her specific objections?

She's playing with fire because if she's frequently having these spells and shes on medications, it means she's in frequent enough contact a doctor they can see patterns emerging and start taking some of her privileges away, leaving her no options.

I had someone close to mean that was taking care of their grandparents in their later years. Her grandfather was very stubborn, refused in-home care (paranoid of stealing) and refused to go to assisted living. He also insisted on continuing to drive his car.

Eventually he was reported for driving his car erratically by family members, which was corroborated with his declining mental state based on what the doctors had observed and they were able to have his license taken away. Then he insisted on staying in the house but the paranoia continued, so eventually the family members giving him his pills/food stopped visiting and eventually he couldn't function on his own, and ended up falling and I think breaking his leg or his hip. Now he HAS to go to the hospital, and now they decide when and where to release him. No license, no ability to fend for himself, no ability to get to doc appts, get his meds or his food, so he was sent to the nursing home. The walls kinda kept closing in because of his stubbornness.

So I mean, she's gotta make some concessions. She can't be in this halfway in, halfway out state forever where she can't take care of herself but she's also left to pick and choose what living arrangements she's willing to accept. Doesn't work that way. You might have to force her hand on that eventually.

Fwiw, I know people who were sem stubborn about in-home care that found a nice balance. If there's family around and you can limit dangerous things in her home, in home care might not be more than a couple hours a day/week when a person just sorts meds, light cleaning and gets groceries. It's not like this person is expected to sit on her lap 24/7.

 

[tedtan]

Sorry to hear you're going through this.

What you're dealing with is not uncommon, as people get older and there's the fear of "what comes next" when you're talking about leaving their home for assisted living or in-home care options.

You say she "doesn't want" in-home care, but what are her specific objections?

Thanks.

Her main issue is simply that she wants to be comfortable in her house and having someone she doesn’t know there makes her a bit uneasy. Not in the sense that she doesn’t like people, but more that she doesn’t want to feel like she has to entertain them while they are there. We did have someone helping out, but I’m not sure my mom ever gave her proper chance.

Secondarily, she is concerned about people taking advantage of her, but more so in terms of home repairs/maintenance and other purchases where she doesn’t want to be taken advantage of on pricing or paying for unnecessary repairs, so my sister and I are helping her out with these types of things.

She's playing with fire because if she's frequently having these spells and shes on medications, it means she's in frequent enough contact a doctor they can see patterns emerging and start taking some of her privileges away, leaving her no options.

I had someone close to mean that was taking care of their grandparents in their later years. Her grandfather was very stubborn, refused in-home care (paranoid of stealing) and refused to go to assisted living. He also insisted on continuing to drive his car.

Eventually he was reported for driving his car erratically by family members, which was corroborated with his declining mental state based on what the doctors had observed and they were able to have his license taken away. Then he insisted on staying in the house but the paranoia continued, so eventually the family members giving him his pills/food stopped visiting and eventually he couldn't function on his own, and ended up falling and I think breaking his leg or his hip. Now he HAS to go to the hospital, and now they decide when and where to release him. No license, no ability to fend for himself, no ability to get to doc appts, get his meds or his food, so he was sent to the nursing home. The walls kinda kept closing in because of his stubbornness.

These are the kind of things I’m concerned about. I’m also concerned that there may a mental health component here, too, in the sense of being depressed about losing her independence. But she’s been doing really well, so if there is a way to maintain her current status, it would be great.

So I mean, she's gotta make some concessions. She can't be in this halfway in, halfway out state forever where she can't take care of herself but she's also left to pick and choose what living arrangements she's willing to accept. Doesn't work that way. You might have to force her hand on that eventually.

Fwiw, I know people who were sem stubborn about in-home care that found a nice balance. If there's family around and you can limit dangerous things in her home, in home care might not be more than a couple hours a day/week when a person just sorts meds, light cleaning and gets groceries. It's not like this person is expected to sit on her lap 24/7.

We do have someone she is willing to let help her with cleaning, cooking, groceries and so forth, but she is only available once a week or once every other week. If she were available more often or my mom would get to know someone else it would make things easier.

One thing we’ve tried to get my mom to agree to is to move in with either my sister or me, but she doesn’t want to move into a house with us. We both live out in the country, so we have a bit of land and my mom is willing to sell her house and build a house on either of our property. And while that is a step in the right direction, it is not nearly as easy as having her move in would be. And that is just in terms of helping her - building a house would take a while in and of itself.

So she seems to want to maintain her independence partly to be independent and partly to avoid being a burden. And, I’m sure, partly because she doesn’t realize that it’s a bigger burden for us having to help her while she’s living at her own house than it would be if she were to move in with one us.

 

[Randy]

Thanks.

Her main issue is simply that she wants to be comfortable in her house and having someone she doesn’t know there makes her a bit uneasy. Not in the sense that she doesn’t like people, but more that she doesn’t want to feel like she has to entertain them while they are there. We did have someone helping out, but I’m not sure my mom ever gave her proper chance.

Secondarily, she is concerned about people taking advantage of her, but more so in terms of home repairs/maintenance and other purchases where she doesn’t want to be taken advantage of on pricing or paying for unnecessary repairs, so my sister and I are helping her out with these types of things.



These are the kind of things I’m concerned about. I’m also concerned that there may a mental health component here, too, in the sense of being depressed about losing her independence. But she’s been doing really well, so if there is a way to maintain her current status, it would be great.



We do have someone she is willing to let help her with cleaning, cooking, groceries and so forth, but she is only available once a week or once every other week. If she were available more often or my mom would get to know someone else it would make things easier.

One thing we’ve tried to get my mom to agree to is to move in with either my sister or me, but she doesn’t want to move into a house with us. We both live out in the country, so we have a bit of land and my mom is willing to sell her house and build a house on either of our property. And while that is a step in the right direction, it is not nearly as easy as having her move in would be. And that is just in terms of helping her - building a house would take a while in and of itself.

So she seems to want to maintain her independence partly to be independent and partly to avoid being a burden. And, I’m sure, partly because she doesn’t realize that it’s a bigger burden for us having to help her while she’s living at her own house than it would be if she were to move in with one us.

Sounds like you might be heading the right direction, so that's good news.

My grandmother (92) still lives at home. She got lucky in that my uncle moved in with her after his kids had grown up and my grandfather passed away. He's getting up there in age too and not in the best health, so they semi-recently got in-home care.

I'm not sure the logistics of how they acquired their assistant. I've had a tiny bit of experience with this, and there's balance between what Medicaid, social services, Medicare, insurance and VA will cover, but generally I think the process is similar-ish, in that theres a medical evaluation and they determine the level of care, which determines the amount of hours they'll pay per week for an in home assistant.

Either way, in their case this is a person that's paid by the state/insurance to come in a couple hours a day for the basic stuff and just to make sure they're taking care of themselves, sometimes help making doc appointments, maybe give them a ride if they need it, etc. The rest of the family helps with the sensitive things like finances, paying bills etc.

In that situation (which I think is also fairly common during a transitional period like you're in), nobody is really overburdened. The family get maybe a few extra hours a month managing bills. The aids are getting paid and it's only a few hours a day/week of basic duties. The state has a person that's at least still in their home, paying taxes, utilities, buying most of their meals etc as opposed to the expense of having to house/cloth/feed them round the clock. And the parents gets to stay in their home. It's probably the best situation all around for everybody.

 

[Randy]

I do have a couple close friends who's mother/MIL was widowed and up there in age. Both went the route of having her move into an addition on the house.

I know one of them had a tiny house built by the Amish, and much of it was pre-fabbed. They built it off site, trailered it over and did the finish work after it was in place but it cut down on the overall scope/time frame of the project. It was basically a bedroom with sitting area, bathroom and kitchenette (kind of like a big hotel room). It's attached to the house but has a separate entrance, I believe they still share washer/dryer and they'll have bigger meals etc in the main house but she stays within arms reach so she can be monitored. I think the project came in sub $40,000 and was move in ready in two or three weeks from when it was trailered over.

 

[KnightBrolaire]

My mother has had some health issues lately and it seems that she is almost at the point where she needs a nursing home or in home nurse to help keep her sorted out, but she does not want either. Twice lately I have gone to her house and found her unconscious, lying on the floor and had to call for an ambulance to get her (back) to the hospital. What seems to be a big part of the issue is that she needs to take meds and eat at specific times throughout the day and if she misses a dose or meal, it throws her off and she spirals downward, missing the next dose/meal and so on.

My sister just took a vacation with her family and took our mother with her. She was able to help keep my mom on schedule, taking her meds and eating properly and she seems to be doing great now that they’ve been back for a bit. But I‘m concerned that she will miss a dose of meds/meal and we’ll have to repeat the unconscious/ambulance/hospital routine.

So my question: if staying on schedule continues helping her, how can we keep her on schedule when we can’t be there with her 24/7 and she doesn’t want in home healthcare providers and refuses a nursing home? Calling her to remind her, keeping her motivated, etc. seem to be helping for now, but am I missing something more that we can do?

There are many different levels to nursing homes and home care. The lowest and most hands off of nursing homes is assisted living, where they just need sporadic care and patients are mostly free to do what they want. Assisted living is closer to a dorm/apartment than it is to a room in a nursing home. There's a lot more opportunity for older people to socialize and bond with each other than in a nursing home typically. Assisted living isn't generally covered by Medicare fyi. Nursing homes are typically higher security, have smaller rooms, and are more suited to people that need more significant levels of care compared to assisted living. Elderly people have significantly less freedom of movement in nursing homes due to safety concerns. If you can, I would always recommend smaller facilities with fewer beds over larger facilities. Larger facilities are more likely to be understaffed and won't treat your mother nearly as well.

Home health care is a similar thing where it can range dramatically from basic assistance to significant assistance. It can be quite expensive (at least as much as assisted living) and it's not always covered by Medicare. They can help with medication compliance just like the other options, along with other tasks.

Medication issues are a big deal, and depending on how bad her compliance is, she may need more frequent care. IF your family can help keep her in compliance, then I don't see a reason to get extra help, but if she starts slipping with med compliance and starts losing her ability to do basic tasks like cooking/showering,etc, then you should definitely consider home health care.

There are also nursing facility ratings via Medicare.gov, so you can look at local facilities and see which are worth checking out, if you choose the facility route.


The biggest issue with the medication noncompliance is the unconsciousness/and potential for serious falls. Generally speaking older people heal poorly, and don't tend to recover very well from serious falls. I would definitely get someone into the home to at least help "fall-proof" it e.g. get rid of throw rugs, make sure extension cords/cables are out of the way, install hand railing in the shower ,etc.

Preventing Falls at Home: Room by Room

Explore these home safety tips to prevent falls, including simple changes in your living areas, personal and lifestyle changes, and home improvements.

www.nia.nih.gov

The National Council on Aging

www.ncoa.org

 

[jaxadam]

The lowest and most hands off of nursing homes is assisted living

That’s actually not quite correct. The first level would be an independent living facility (which my aunt and uncle are in) then assisted living, and finally memory care. We always joke that my uncle is one ladder fall away from taking a right instead of a left at the courtyard after dinner.

 

[KnightBrolaire]

That’s actually not quite correct. The first level would be an independent living facility (which my aunt and uncle are in) then assisted living, and finally memory care. We always joke that my uncle is one ladder fall away from taking a right instead of a left at the courtyard after dinner.

In this particular case she wouldn't be in independent living, so I didn't bother including it. Her inability to take her meds consistently would automatically bump her up to assisted living at minimum. Independent living wouldn't even be an option for her.

 

[jaxadam]

We bought my mom a house a few miles away and moved her here in 2019. The wheels have fallen off with her mentally, and it is very challenging keeping her on track but we have a lot of help and resources. Just the other day she told us she went to Maui with Jill and Joe Biden to view the destruction and she saw a dog there she really wanted to rescue. Oh, she’s also dating Barry Gibb from the BeeGees.

She is physically very vibrant and we feel that as long as we can manage her aging in place then that’s the best bet for her. I agree that the scheduling is the most important. We make her pills in a monthly dispenser and have an alarm go off that lets her know to take them every day. She does miss a few but we constantly check on everything and keep her up to date. She’s got great neighbors (one’s a nurse and the other used to be an ombudsman) so we have a great network immediately next to her. All of the services we have there (cleaners, yard, A/C, pest control, turf management, etc.) know her and us and call or text if anything strange is going on. We have looked at a lot of places for her to go but I don’t think we’re quite there yet. Her doctor has said one fall and broken hip will put her risk of mortality at 50%.

It is very hard managing things but we do it. We’re close, we have a lot of help, and we just have to adapt to the changes. The hardest part for me has been accepting the fact that she’s literally losing it mentally, but my wife has said that if those are the things she believes then she’s living her best life.

 

[jaxadam]

In this particular case she wouldn't be in independent living, so I didn't bother including it. Her inability to take her meds consistently would automatically bump her up to assisted living at minimum. Independent living wouldn't even be an option for her.

I’m with you.

 

[tedtan]

My grandmother (92) still lives at home. She got lucky in that my uncle moved in with her after his kids had grown up and my grandfather passed away. He's getting up there in age too and not in the best health, so they semi-recently got in-home care.

My grandmother lived to 96 with relatively few health problems, though she got to where she couldn’t see or hear very well in the last few years. Unfortunately, my mom thinks that means that she should have 20 or 30 years left even though she’s had some health issues my grandmother never had. She even seems to be losing strength and stamina over the past few months.

I do have a couple close friends who's mother/MIL was widowed and up there in age. Both went the route of having her move into an addition on the house.

I know one of them had a tiny house built by the Amish, and much of it was pre-fabbed. They built it off site, trailered it over and did the finish work after it was in place but it cut down on the overall scope/time frame of the project. It was basically a bedroom with sitting area, bathroom and kitchenette (kind of like a big hotel room). It's attached to the house but has a separate entrance, I believe they still share washer/dryer and they'll have bigger meals etc in the main house but she stays within arms reach so she can be monitored. I think the project came in sub $40,000 and was move in ready in two or three weeks from when it was trailered over.

I really wish my mom would go for something like this; it would make things easier for everyone.

There are many different levels to nursing homes and home care. The lowest and most hands off of nursing homes is assisted living, where they just need sporadic care and patients are mostly free to do what they want. Assisted living is closer to a dorm/apartment than it is to a room in a nursing home. There's a lot more opportunity for older people to socialize and bond with each other than in a nursing home typically. Assisted living isn't generally covered by Medicare fyi. Nursing homes are typically higher security, have smaller rooms, and are more suited to people that need more significant levels of care compared to assisted living. Elderly people have significantly less freedom of movement in nursing homes due to safety concerns. If you can, I would always recommend smaller facilities with fewer beds over larger facilities. Larger facilities are more likely to be understaffed and won't treat your mother nearly as well.

Home health care is a similar thing where it can range dramatically from basic assistance to significant assistance. It can be quite expensive (at least as much as assisted living) and it's not always covered by Medicare. They can help with medication compliance just like the other options, along with other tasks.

Medication issues are a big deal, and depending on how bad her compliance is, she may need more frequent care. IF your family can help keep her in compliance, then I don't see a reason to get extra help, but if she starts slipping with med compliance and starts losing her ability to do basic tasks like cooking/showering,etc, then you should definitely consider home health care.

There are also nursing facility ratings via Medicare.gov, so you can look at local facilities and see which are worth checking out, if you choose the facility route.


The biggest issue with the medication noncompliance is the unconsciousness/and potential for serious falls. Generally speaking older people heal poorly, and don't tend to recover very well from serious falls. I would definitely get someone into the home to at least help "fall-proof" it e.g. get rid of throw rugs, make sure extension cords/cables are out of the way, install hand railing in the shower ,etc.

Preventing Falls at Home: Room by Room

Explore these home safety tips to prevent falls, including simple changes in your living areas, personal and lifestyle changes, and home improvements.

www.nia.nih.gov

The National Council on Aging

www.ncoa.org

Thanks.

We’d rather make it work ourselves if possible and, if not, go with home health care so long as it’s feasible rather than put her in a facility. But if it comes to that, we’ll have to make the decision. Any input on when it’s time to make that call?

We bought my mom a house a few miles away and moved her here in 2019. The wheels have fallen off with her mentally, and it is very challenging keeping her on track but we have a lot of help and resources. Just the other day she told us she went to Maui with Jill and Joe Biden to view the destruction and she saw a dog there she really wanted to rescue. Oh, she’s also dating Barry Gibb from the BeeGees.

She is physically very vibrant and we feel that as long as we can manage her aging in place then that’s the best bet for her. I agree that the scheduling is the most important. We make her pills in a monthly dispenser and have an alarm go off that lets her know to take them every day. She does miss a few but we constantly check on everything and keep her up to date. She’s got great neighbors (one’s a nurse and the other used to be an ombudsman) so we have a great network immediately next to her. All of the services we have there (cleaners, yard, A/C, pest control, turf management, etc.) know her and us and call or text if anything strange is going on. We have looked at a lot of places for her to go but I don’t think we’re quite there yet. Her doctor has said one fall and broken hip will put her risk of mortality at 50%.

It is very hard managing things but we do it. We’re close, we have a lot of help, and we just have to adapt to the changes. The hardest part for me has been accepting the fact that she’s literally losing it mentally, but my wife has said that if those are the things she believes then she’s living her best life.

Sorry to hear that. It’s been tough here with my mom, so I have a bit of an idea of what you’ve been going through.

Unfortunately, with m mom, she doesn’t seem to be living her best life. She thinks doctors are holding her against her will, trying to separate her from her family and that if she pays cash instead of via Medicare that they may have to let her out (this while she’s in no condition to be discharged).

You being close to your mom is a good thing. I’m 45 to 60 minutes away, so having a commute makes it tougher and less efficient. We definitely need to get her closer to us if nothing else.

 

[KnightBrolaire]

Thanks.

We’d rather make it work ourselves if possible and, if not, go with home health care so long as it’s feasible rather than put her in a facility. But if it comes to that, we’ll have to make the decision. Any input on when it’s time to make that call?

The main issue is the med compliance. All of the options can deal with it tbh. If she's not having other issues with basic activities (e.g showering, dressing, cooking, buying groceries,etc) then she may need only minimal help, which home health can do, or she can get help via assisted living typically. Neither is incorrect in this situation, though most home health tends to be more focused on people unable to care for themselves versus assisted living.
If she starts to deteriorate quickly in terms of being unable to do basic activities on her own you may be better off putting her in a dedicated nursing home.