Support for caring for an elderly relative

[tribeca]

So many people are caring for elderly relatives.   Thought  it would be nice to have a place for us to have a place to get advice,  vent, laugh and get & give support.   

[SunnyBeBe]

I just saw this tread. It's a good idea.  I have some experience with this.  It's the kind of thing that can be very stressful, but rewarding.  

[Blergh]

You know what my biggest stress is re caring for my 80-something mother? The fact that she still wants to care for ME with the very same attention to detail she did when I was a child and refuses to consider that she can't do everything she used to do as quickly, efficiently or even safely that she once did.  Seriously, I'm VERY grateful that she loves me, wants the best for me  and KNOWS who I am( since I know many folks her age have even forgotten who they were much less who their offspring were). However; I have this fear she'll overdo it and wind up in serious trouble despite the fact that we're connected  even when I'm at work 24/seven thanks to New Millennial technology. I also start get worried if she doesn't pick up the phone in under three rings when I call her. I'm also thankful that she has a great many friends and family she keeps close touch with and is very keen on staying on top of what's going on (though, considering how upset news can get her, I do try to encourage her not to do more than necessary).

[tribeca]

@Blergh that does sound stressful.  I am not sure parents ever stop seeing us as children.   

When my dad was around 40 he was horsing around in the pool trying to jump in pool and landing on a beach all.  His dad yelled at him calling him a damn kid LOL.  

    My mom is disabled before my dad retired I rented out bottom half of their house and helped mom with cleaning and doctor appointments.   I had to leave some things for her to do or she said she didn’t feel useful.  Sometimes I would do laundry and leave some towels for her to fold and put away. 

Dad retired February and they moved to Florida.   I hate it because now dad has health issues and I am so far away.  

     I am alone     When I started going to church it’s such a family activity I almost quit going.    An elderly couple there adopted me as their church daughter.   Lately the husband (80) is having memory issues and the wife is having difficulty with the stairs at their apartment.    I have been going with them looking at senior apartments.  The ones that don’t go by income so very expensive.     The ones that go by income have long waiting lists. 

[SunnyBeBe]

Tribeca,

It's so nice that you are helping the senior couple.  I bet they really appreciate it.  I'm not sure what state they are in, but in some places ,seniors with disabilities, like dementia, can get extra help, like with Assisted Living, if the doctor prescribes it.  Not sure how advanced his is.  I know that one senior trying to take care another one, especially with cognitive decline can be very overwhelming. I hope they can find a place where there's help on the premises. 

[BookWoman56]

I've recently become the primary caregiver for my mother, who just turned 90 earlier this month. She'd been in an assisted living facility in another state for the past few years. Long story short, my oldest sister, who had been handling things with the facility and so forth, died after a brief illness. Without her there to watch over my mother's care, neither I nor my remaining siblings were comfortable with my mother remaining in the facility, in addition to her having lost her Medicaid benefits and not being able to afford the facility any longer. I was the only one of my siblings with the right combination of a floor plan that would work for my mother to get around in her wheelchair and no other caregiver responsibilities, etc. I'm currently dealing with major paperwork and bureaucracy issues, because all of my mother's ID disappeared while she was in the facility.  Her drivers license had expired while she was in the facility, so there's no option to just get a replacement drivers license. Getting her new ID for a different state has so far entailed sending off for her birth certificate, which turned out not to have her name on it, doing an affidavit to have the birth certificate corrected and getting a corrected copy, going with one of my siblings and my mother to the local SS office to grovel long enough for an agent to decide we were telling the truth about my mother's identity and the agent agreeing to have a new SS card and Medicare card sent to my address, and being under the impression, based on the damn checklist from the state, that I had everything I needed to take my mother to the nearest drivers license office to get an official state photo ID. But no, the agent there informed me that because my mother's birth certificate has her maiden name on it, while her SS and Medicare card have her married name on them, I have to also provide a copy of the marriage license for my parents, to have a paper trail for her name change. I swear it did not used to require nearly this much documentation to get an ID. But in about 2 weeks, I should have the marriage license and be able to take my mother to get an actual state ID, which is needed for numerous things such as opening a new bank account her for her, getting her in to a geriatric specialist so that when her current refills run out, she can get the meds she needs, etc. It's all been a  major PITA.

On the plus side, although my mother is understandably upset about my sister's death, for the most part she's happy to be in a private home again instead of a facility. The sole regret she has is that for the past six months or so, she had become very close to a guy who is a day patient at the facility. And this is what is pissing me off. The man is about my mother's age, and comes from the same town where my parents lived. (My father died about 5 years ago.) This man, though, is married to a  much younger woman and he has Alzheimer's, so his wife enrolled him as a day patient. The facility accepted him even though they don't really have the staff or expertise to handle someone with his condition; the full-time residents need assistance with some life functions, but they generally have pretty good cognitive functions left. Anyway, the staff encouraged my mother to spend time with this guy, to the point that every weekday that he came to the facility, they spent the entire day hanging out with each other and talking. Not surprisingly, they developed a romantic interest in each other, with the guy saying he wanted them to get married (forgetting that he's already married and his wife isn't letting go of him because he has money). So now that my mother is in a different state, living with me, there is no contact because the wife has now instructed the facility not to let my mother talk to the guy if she calls there. The guy does not have a cell phone, and the only number my mother has for him is the wife's business phone. So, I'm pissed because the facility staff strongly encouraged my mother to spend as much time as possible with this guy, because that way she was essentially taking care of him and so relieving them of the necessity of having a staff member monitor his daily activities. The wife was fine with my mother and him hanging out as long as my mother was at the facility, but has now blocked all attempts to communicate. And so my mother is extremely upset because she misses this guy, who will probably not remember her name in 6 months because of his condition. I feel like I'm in the middle of a geriatric soap opera, and like the facility used my mother's willingness to befriend this guy to their own benefit, and didn't stop to think that the situation was not going to end well. 

[DeLurker]

I'm sorry.  It sounds like a pretty harmless thing given all the factors they are both dealing with and I agree that the facility should not have accepted him if they did not have the proper staffing levels/experience.  Most of all I am sorry that your Mom is so upset by this - it seems like the wife took an unnecessary step because without the regular in person interaction, it probably would have come to an end because of his Alzheimer's.

[SunnyBeBe]

Bookwoman56,

I'm sorry about the loss of your sister. It sounds like you have a lot on your plate.

  The kind of things that you are doing are very complex and tedious. No wonder that you are frustrated.  There are so many rules and polices to be aware of. It can be very stressful too.  I went through something similar.   Do you have Durable Power of Attorney and Healthcare POA for you mother?  Those documents can be invaluable when you are the caretaker. I'd seek a consultation with an Elder Law attorney immediately to get advice and to get those documents.  They can also assist with advice on how to get things straight. I might explore becoming the Representative Payee with Social Security, if she gets social security and can't handle her own fiances.   And, if your mom is paying you any of her income for rent or services, I'd ask the attorney how to draw up a contract for that, since, if your mom ever needs nursing home care, a paper trail would show that she's not just giving her money away, but, paying for services and rent.

I hope you find the answers you that need and that things get easier. 

Edited June 28, 2018 by SunnyBeBe

[BookWoman56]

@DeLurker and @SunnyBeBe, so sorry for the delay in responding to your posts. Somehow I missed seeing that there were new posts here. Thanks to both of you for your words of advice.

For a status update, here's the current situation: Got her state-issued photo ID, which in turn enabled me to set up new bank accounts for her, because among other things, her old accounts had been compromised (unfortunately, one of my oldest sister's kids has very sticky fingers) and even if that were not the case, there were no local branches of her previous bank closer than 70 miles away. And while I generally do 99% of banking stuff online, there are occasions when you have to go into a branch. In this case, it was setting up a new account with me as the representative payee for her SS benefits. When my other older sister and I took our mother to the SS office and talked to an agent, he strongly recommended that one of us be set up as representative payee, and so since she's living with me now, we decided I would be the representative payee. My mother also receives VA benefits, because my father was in the military during the last year of official US involvement in WW2, and there is some program that provides benefits for widows who meet the eligibility criteria. We had no idea this was available, but the assisted living facility had notified my oldest sister of this possibility, and the paperwork had been processed and approved, about a year ago. (This is the reason my mother lost her Medicaid benefits in Florida, because her combined SS and VA benefits put her roughly $50/month over the income limit.) For the VA benefits, there has to be a fiduciary appointed and a fiduciary bank account set up. My niece (not the one with sticky fingers) had been handling that, but with the change in situation, she resigned as fiduciary. My other older sister and I discussed options, and I requested her to be the fiduciary for the VA benefits. One lesson we learned when my oldest sister died was that having one person responsible for everything is a little risky. 

The VA sent a rep out to my house to interview me and my mother, essentially to check on her new situation. (After the rep left, my mother asked me why the VA had sent someone, and I told her they were checking to make sure I didn't have her chained to a bed somewhere and wasn't using her benefits to buy crystal meth or opioids.) The guy was thrilled with the living arrangements, because they much prefer to have the beneficiaries live in a private home rather than a facility of some sort. I showed him her bedroom on the ground floor, and that she can get into the kitchen and living/dining area, plus bathrooms, in her wheelchair. Anyway, the VA did appoint my other older sister as the fiduciary, and did a couple of things to make everything easier. One is that unlike when my mother was in the facility, they are not going to require receipts for every single expense to account for how the funds are spent. While the rep was here, he talked to us about her expenses and identified a recommended amount for personal expenses such as clothing and so forth. At that point I was not using any of her benefits for room and board per se; as I explained to the rep, I had spent some funds on one-time expenses such as paying for moving her possessions over here, modifications to the house (widening doorways and installing grab bars), furniture for her bedroom, and so forth. He was fine with that, and so the second thing that has made it all easier is that the VA sent a letter confirming that of her combined VA and SS benefits, I will receive a set amount per  month for room and board, with the rest divided for a clothing allowance and personal expenses (cosmetics, etc.). So, the VA funds are deposited into the fiduciary account my sister set up, and my sister mails me a check for each month, noted with the designated amount for room and board, etc. Essentially, the one check she writes per month and sends to me is all the paper trail they need for how the funds are being spent, and that they are being spent for my mother's benefit. 

I do have a durable POA that the assisted living facility executed, which enables me to handle all of her affairs: financial, health, etc. It has definitely come in handy for banking and dealing with doctors' offices. I've been able to get her into a geriatric specialist a few times now, and she's undergoing a couple of procedures to address some circulation problems in her lower legs. So, since the time of my original post, things have come along as needed. She did have about 3 months of being intensely upset about not being able to talk to her BF from the facility, but that has faded with time and a change in antidepressants. I think the guy's wife forbade phone calls from my mother primarily because she was afraid it would upset him to hear her voice but not be able to physically see her. In any case, while it was upsetting to her initially, I think it's better for her to move on rather than deal with the guy slowly forgetting who she is.

One suggestion I do have for anyone caring for an elderly relative is to get them into a geriatric specialist to review all current meds and OTC items being used. My mother's specialist noted that one of the meds my mother has been on for about 10 years now, may have helped with the condition it was originally prescribed for, but the long-term side effects have exacerbated another condition she has, which is much more serious than the other condition. Similarly, there are better choices available now than some of the prescriptions she has been taking for several  years. His attitude is that he's not going to change a bunch of her meds all at once, but the goal over the next year is to switch out one med at a time for something that works better with fewer negative side effects, in the cases where a change is needed. Also, with geriatric patients, there is often a situation where they are taking meds prescribed by several different doctors, and the PCP needs to be aware of everything the patient is taking to make sure there are no bad combinations or combinations where drug A offsets the benefit of drug B. 

[SunnyBeBe]

Thanks for the update BookWoman.   I'm glad you've gotten so much taken care of.  

[Vixenstud]

Oh boy.  

So I'm a 54 year old living and primarily caring for my 76 year old mother, who suffers from Secondary Progressive MS.  Ma was the original independent bad ass, who raised 3 kids on her own in the projects of North Philadelphia.  She worked for the city as a File Clerk and had a sharp mind and was always walking; unfortunately, that's where the MS zapped her, for she now uses a walker and electronic/manual wheelchair.  She's still stubborn af and wants to do what she wants when she wants which would be fine if she didn't have MS.

I've gone from living on my own to taking care of her; I work full-time and IMO work two shifts....work then her when I come home.  I started with mild arthritis in the knee to moderately advanced.  Add high blood pressure to an overweight body and you get the picture.  My brother lives in Georgia and my sister lives in Virginia; my sister is the one that comes up when she can.  My brother, who is the oldest and 'golden boy'?  We rarely see, since he has his family.

It is so fucking challenging taking care of her by myself and she doesn't make it easier.  Unfortunately, I am extremely sensitive and take things personally, plus my patience left me long ago.  I'm surprised Mr. Vixenstud is still around as we hardly have time to get together.  

I could go on and on, but I'd either start crying or eating scary huge portions of spaghetti. 

Just wanted to add my two cents and glad to know there is a forum for this.

Edited January 17, 2019 by Vixenstud

[shapeshifter]

On January 17, 2019 at 4:01 PM, Vixenstud said:

Oh boy.  

So I'm a 54 year old living and primarily caring for my 76 year old mother, who suffers from Secondary Progressive MS.  Ma was the original independent bad ass, who raised 3 kids on her own in the projects of North Philadelphia.  She worked for the city as a File Clerk and had a sharp mind and was always walking; unfortunately, that's where the MS zapped her, for she now uses a walker and electronic/manual wheelchair.  She's still stubborn af and wants to do what she wants when she wants which would be fine if she didn't have MS.

I've gone from living on my own to taking care of her; I work full-time and IMO work two shifts....work then her when I come home.  I started with mild arthritis in the knee to moderately advanced.  Add high blood pressure to an overweight body and you get the picture.  My brother lives in Georgia and my sister lives in Virginia; my sister is the one that comes up when she can.  My brother, who is the oldest and 'golden boy'?  We rarely see, since he has his family.

It is so fucking challenging taking care of her by myself and she doesn't make it easier.  Unfortunately, I am extremely sensitive and take things personally, plus my patience left me long ago.  I'm surprised Mr. Vixenstud is still around as we hardly have time to get together.  

I could go on and on, but I'd either start crying or eating scary huge portions of spaghetti. 

Just wanted to add my two cents and glad to know there is a forum for this.

I thought recent changes to Medicare now cover in-home nurses for some relief for family care givers. 

[Vixenstud]

*Runs to Medicare website*

If so, that would be a huge help....the company we use, we pay out of pocket.  And while we love the employee that cares for my mom, I'm paying half of the bill and she pays the other half.  If we could get a smidge of monetary relief that'd be great.

[DeLurker]

I hope that works out @Vixenstud.  It would be important for you, but expanding the group of people who your Mom interacts with might help keep her engaged. 

[Vixenstud]

Thanks, D.

As for interaction, well.........

Ma, like the rest of our family, has always been a loner.  She likes the caregivers that tend to her everyday but aside from family, she keeps to herself.  If she can watch tv all day without doing anything then all is right in her world.  We keep trying to let her know that she's gotta move around while she can; it is hard enough for me to take care of her now but should she become unable to walk then she's going to have to be put into a facility, the one thing she's fought against.

[DeLurker]

Ahhh...understood.  My Dad was naturally a bit nosey so the more people were around, the more he tried to keep track of what was going on.  When it was just Mom most of the time, he would start to slide a bit and her trying to get him to do things he needed to do became more difficult.

[SunnyBeBe]

On 1/17/2019 at 5:01 PM, Vixenstud said:

Oh boy.  

So I'm a 54 year old living and primarily caring for my 76 year old mother, who suffers from Secondary Progressive MS.  Ma was the original independent bad ass, who raised 3 kids on her own in the projects of North Philadelphia.  She worked for the city as a File Clerk and had a sharp mind and was always walking; unfortunately, that's where the MS zapped her, for she now uses a walker and electronic/manual wheelchair.  She's still stubborn af and wants to do what she wants when she wants which would be fine if she didn't have MS.

I've gone from living on my own to taking care of her; I work full-time and IMO work two shifts....work then her when I come home.  I started with mild arthritis in the knee to moderately advanced.  Add high blood pressure to an overweight body and you get the picture.  My brother lives in Georgia and my sister lives in Virginia; my sister is the one that comes up when she can.  My brother, who is the oldest and 'golden boy'?  We rarely see, since he has his family.

It is so fucking challenging taking care of her by myself and she doesn't make it easier.  Unfortunately, I am extremely sensitive and take things personally, plus my patience left me long ago.  I'm surprised Mr. Vixenstud is still around as we hardly have time to get together.  

I could go on and on, but I'd either start crying or eating scary huge portions of spaghetti. 

Just wanted to add my two cents and glad to know there is a forum for this.

That must be pretty tough, but, how is this helping you out?  Taking care of your mother, plus two jobs, then your own health issues....it sounds like too much, imo.  If's your call though.  I get it.  I would just say that when you burn the candle at both ends and are miserable too, it can take a toll on your health.  Even if mother prefers no outside help, it might not be possible.  Sometimes, necessity dictates things go a little differently than we want.  I hope you can get some relief.  I wouldn't shy away from being an advocate for myself and my mom.  Others, including your mom, may not realize the stress on you.  I'd share as much as possible with what you are dealing with.  It helps to vent and get other' people's input, imo.  I've gotten a lot of support online.  

[Vixenstud]

16 hours ago, SunnyBeBe said:

That must be pretty tough, but, how is this helping you out?  Taking care of your mother, plus two jobs, then your own health issues....it sounds like too much, imo.  If's your call though.  I get it.  I would just say that when you burn the candle at both ends and are miserable too, it can take a toll on your health.  Even if mother prefers no outside help, it might not be possible.  Sometimes, necessity dictates things go a little differently than we want.  I hope you can get some relief.  I wouldn't shy away from being an advocate for myself and my mom.  Others, including your mom, may not realize the stress on you.  I'd share as much as possible with what you are dealing with.  It helps to vent and get other' people's input, imo.  I've gotten a lot of support online.  

It is too much.  Before caring for her, I was unemployed for almost over ten years.  I had to move in with her and give up my apartment due to my benefits running out and not having any place to live.  Finally get a job and still caring for her. 

It is taking a toll on my health, and I constantly relay that to my brother and sister; they never have an answer when I ask about Plan B in the event that something should happen to me.  I guess they aren’t thinking about that, as all three of us ain’t spring chickens.  While they always thank me for what I am doing, that doesn’t always work for me, as I truly believe that they don’t get how hard this is.

My uncle recently passed away and my mother’s siblings are giving my sister the house; she plans to renovate it and bring in Ma.  She’d have to get live in help though, as I made it perfectly clear that I have no plans on living with them.  At this point in my life I’ve had enough roommates and prefer to be on my own again.

Tthough we have someone to watch her during the day via a homecare service, there have been times when the caregiver is sick or something comes up.  If there isn’t back up then I have to take a day off and care for her.  I am her staunchest advocate, to the point where eyes roll whenever I accompany her to appointments or when she was in facilities to regain her strength. 

As for venting, I figure what for?  Even posting here I feel silly because after all is said and done I’m still in the same situation.

But you guys have been kind, much appreciated.

[SunnyBeBe]

It sounds like you have done A LOT for your mother's care. I hope you are able to take credit for that.  It sounds like you are investing a lot of your own time and energy into her care.   It is hard when a caregiver doesn't show up.  Sometimes, though, it's more expensive, an agency will have backups so you aren't caught off guard.  I hope those plans work out, so, you can get some relief.  It sounds like you really have had it rough. 

[SunnyBeBe]

I'm sorry to hear about your dad's condition.  It's really challenging to keep sodium intake down.  Practically anything in a grocery store has it and A LOT of it.  Just one cup of soup may have over half your daily allotment of sodium.  Practically, everything that is in a box is high salt.  If you check raw meat, some of it  also has it! Like raw chicken fillets.  Be careful to check ingredients.  Many of them have added sodium. The only thing I can think of are fresh and frozen fruits, vegetables, whole grains and some meats. You can flavor with herbs and spices (check with his doctor on these).  Is he also on a blood thinner?  If so, then green food is not allowed. I would think there would be some recipe books for someone like your dad.  I'd also talk to him about just how strict he wants to be.  My dad is a heart patient, but, he eats pretty much as he wants.  He's almost 82 and he feels that enjoying his favorite dishes are important, so, he's not very strict with his diet, though, he' doesn't have CHF. 

Edited April 9, 2019 by SunnyBeBe

[Vixenstud]

If I hear or read the word 'heart' one...more...friggin' time today!

So this past weekend I treated myself to a high end hotel in Atlantic City…..I figured I do so much for Ma that I need ‘Vixenstud’ time.  Mr. Vixenstud was supposed to come with me but had a heart attack on the day we were supposed to go!  After visiting him and trying not to freak out more than I had earlier when he told me, I went by myself to the hotel.  Outside of winning $50 at the casino, I basically spent the time eating (Excuse me, Room Service?  You are too goddamned expensive, piss off sir!!) and watching Lifetime movies.  When it came time to sleeping, I tossed and turned like a ship in the ocean.

Come home, literally drop my bag to the floor and check in on my mother, who is on the commode having a vaso vago moment!  She’s had them before so I was going to wait it out….but then she vomited, so freaked out and called 911.  The medic said it was a good thing that I did, as her heart rate and blood pressure was so low that we almost lost her.  So after two days, she’s going to be discharged tonight; Mr. Vixenstud was discharged last night and is doing well.

I’m back at work, sleepy, hungry and ready to machete the first idiot that comes at me wrong.

Forumfish, hope your dad is feeling better, sorry to have ranted about heart issues and stuff.

[BookWoman56]

@Vixenstud, that's a huge amount of shit to have to deal with simultaneously. I hope Mr. Vixenstud makes a full recovery soon, so you don't have to deal with two patients. Is the plan still on for your sister to renovate the house she's being given and move your mother in with her? It definitely sounds as if you need a break from caring for her, and you need your own space. 

On 3/19/2019 at 3:45 PM, forumfish said:

He's 89 and I know there's no point trying to get him to stop snacking completey, so I will make sure to buy healthier options. I am making no-sodium trail mix and have fresh fruit on hand

I try to make sure my mother has healthy options on hand, but she also likes a fair amount of junk food. And I'll be blunt here; she's lived to be 90 (91 in a couple of months) eating whatever the hell she wants, so I am not in any way going to insist that she eats only food I approve of. When she was in the assisted living facility, she had to eat the food they prepared but also insisted that my sister bring her certain snack foods. With your father, certainly you feel obligated to make sure he has healthy options, but as long as he's capable of making his own decisions, ultimately it's his choice as to whether he sticks to a healthy diet or eats comfort food. My mother consumes insane amounts of salt; her own mother always kept a small dish of salt (maybe a salt cellar?) next to her plate to dip her food into, so my mother grew up thinking a ton of salt was normal. I don't cook using much salt at all, but she adds salt to almost everything. Her blood pressure is fairly good and she has no heart problems, so it's evidently not doing her much harm. But for me the bottom line is that I'd rather have her eat stuff she likes and be happy, even if that means living a year or two less than she might, than to insist that she follow a specific diet and be miserable, simply to extend her life another year or two. It would be different if she were younger, but she's lived a long, full life and I'd rather she enjoy her life for however long she has left, whether months or years, than to listen to her bitch and moan about not having her snacks and salt for an extra year. 

In general, I will say the biggest lesson I've learned from being the primary caregiver for an elderly parent is that much like when  you have small children, it's critical to find some time for yourself. I work full-time from home, take care of my mother, and am also babysitting my grandson a few hours every weekday. So lately I've been finding it therapeutic to take either Saturday or Sunday and go on a solo excursion for several hours, usually just driving to some specific landmark, chilling out for a little while, and then driving back. Highway driving relaxes me and gives me some peace and quiet for the most part, which I usually desperately need after a week of dealing with a lot of stress. The last few weeks have been especially stressful for several reasons, and adding to that is my mother wants to be helpful by loading and unloading the dishwasher. Sounds great in theory; in reality, not so much. She sometimes forgets to run the dishwasher, thinks dishes have been washed, and proceeds to put up an entire load of still dirty dishes into the cabinets, blissfully unaware of their condition. She also will take dishes out of the dishwasher and put them on the kitchen counter next to the sink, in the designated place for dirty dishes that haven't made it into the sink yet, with the result that she mixes up clean dishes with dishes that haven't even had scraps removed or dumped. In all seriousness, a week or so ago, I found 2-3 glasses in my cabinet with an inch or so of tea/soda still in them. 

[Vixenstud]

15 hours ago, BookWoman56 said:

Is the plan still on for your sister to renovate the house she's being given and move your mother in with her?

After much back and forth from her (wondering if she was taking on too much to renovate, yadda-yadda-yadda), yes.  However, this is a project that's going to take some time.

[Elisecrumley]

The job of caring an elderly relative is somewhat very difficult, as we want to care for them, but due to busy daily schedule the things don't get in the way we want. In this case, people find out options for assisted living, or Care giving centres. I was just surfing on the web, and I came across, some of the lawyers who are reading for taking care of elderly parents at home NJ. This news made my day, as I was actually in a need of such caring person, to take care of my aunt.

Edited August 26, 2019 by Elisecrumley

[BookWoman56]

My mother’s doctor decided last week that she qualifies for hospice care, given the extent of her vascular disease and that she’s had 2 hospitalizations, followed by a 3-week stay in a skilled nursing facility, followed by being at home with some home health care in the form of physical therapists, all in the last several months. It’s a somewhat convoluted story, but here goes: she barely nicked her left thumb while slicing a tomato. Didn’t mention it to me until a day or two later, at which point I applied antibiotic cream. But sepsis had already set in, which resulted in hospital stay plus surgery on her hand and wrist area because the infection had spread. She was discharged and came home, only to end up back in the hospital for pulmonary embolism plus clots in her legs. That in turn led to the stay in the skilled nursing facility. 

The hospice care just started, but already I am thrilled by it. No, her doctor doesn’t think she’s dying on an immediate basis. But her health is compromised enough to qualify her for this, which is 100% covered by Medicare. She will get a nurse visit once a week, and a visit by an aide 3 times a week to help her with showering, cleaning up her bedroom and bathroom, grooming, light laundry, etc. While she’s on hospice, they pay for her critical meds (in this case, everything except some cholesterol meds) and have them shipped to my house. They cover any incontinence supplies. To anyone dealing with a similar situation, I urge you to check with your elderly relative’s doctor about whether this is an option. My mother’s doctor flatly said it can be the difference between a caregiver being able to function well and complete burnout. Some patients and caregivers are hesitant to pursue it because they think it means death is imminent, but that’s not the case. 

ETA: in the event of a fall, which is quite common for elderly people and my mother in particular, I can call them 24/7 and they will send a lift team out to pick her up and check for injuries, at no additional cost. 

Edited August 24, 2019 by BookWoman56

[BookWoman56]

I mentioned elsewhere that my mother finally died a couple of days after Christmas. Although I am still exhausted from the last few months, I did learn a few things that I hope will be useful for others. 

First, while the hospice care was quite useful, they don’t escalate to daily visits until the patient is near death. That means you will need to handle a variety of physical things, such as moving the patient in the bed and dealing with incontinence. I found a positioning bed pad with handles and a couple of waterproof bed pads from Amazon to be invaluable. The incontinence supplies (disposable underwear, adult diapers, and disposable bed pads) supplied by hospice care were often thin and sometimes not workable, so I purchased a stash for overnight use. For example, in theory my mother wore a size medium in diapers, but I could never get the things spread under her far enough to fasten, so I got some in a larger size. Because of the incontinence, even with diapers and so forth, there were days when she was going through 4 sets of pajamas. My advice would be to stock up on some inexpensive pajamas and sheets; avoid anything with a silky texture as the patient will then slide right off the bed. I also bought one of those bedside tables like they have in hospitals to keep a supply of iced water and Kleenex on. 

Second, decide on funeral arrangements ASAP. My mother’s funeral had been paid for and her cemetery plot purchased about 6-7 years ago. But it did not cover the cost of transporting her from TX to her home state. Note: if you need to make similar transportation arrangements, don’t call a funeral home to do this; the quotes I got ranged from $3200-$3500. Call a mortuary service instead; they know which paperwork is needed and have reasonable costs. So the difference there was $600 for the airfare plus minimal other costs, and aside from the airfare, the funeral home in my hometown will pay for those services out of what they have already been paid. For example, the prepaid plan included embalming the body; since that had to be done by the mortuary service so the body could be put on an airplane, the prepaid plan simply reimbursed the local mortuary service. 

Sorry if this all seems a bit morbid, but it’s all definitely things I wish I had known earlier. It seems like everyone wants to give you brochures on your relative’s emotional/spiritual needs while ill or dying, but not much in the way of practical knowledge. 

Edited January 6, 2020 by BookWoman56
Fixed typos

[BookWoman56]

On 4/10/2020 at 4:27 PM, forumfish said:

Anyone else living with a relative with dementia? If so, how are you handling things related to Covid-19? For example, I try explaining to my dad that it isn't wise for me to make multiple grocery runs to pick up snacks, but it doesn't seem to matter. He wants what he wants when he wants it.

My mother’s vascular dementia made it problematic at times for me to comply with her wishes/whims, even without a pandemic. I would just tell her that I couldn’t do XYZ today, but maybe in a few days. Typically she would forget what she had wanted me to do. With your father, can you just tell him you have to wait a few days, and will get all his snacks at once? That is, don’t tell him it’s “unwise” to go; tell him that you have to follow the city/county guidelines. That said, dementia is very difficult to deal with and there will be times when there’s no reasoning with the person. 

[MissT]

I apologize for just seeing this post.     Has anyone ever used "A Place For Mom"?  I think my mother is almost to the point where she needs assistant living. She lives with me now , but she starting to get dementia and though I care about her, I'm not comfortable providing washing and dressing.   Please don't judge me.  I'm a nice person, just not with those things.    I work from home as well and taking its toll on me with no sibling help.  

[ginger90]

7 hours ago, MissT said:

I apologize for just seeing this post.     Has anyone ever used "A Place For Mom"?  I think my mother is almost to the point where she needs assistant living. She lives with me now , but she starting to get dementia and though I care about her, I'm not comfortable providing washing and dressing.   Please don't judge me.  I'm a nice person, just not with those things.    I work from home as well and taking its toll on me with no sibling help.  

There is absolutely nothing wrong with knowing your limits. 

[Absolom]

A Place for Mom didn't help me and gave out my information all over the place so I was still getting calls long after I placed mom.  Hospice has been wonderful and was great for my dad.  

[SunnyBeBe]

On 10/25/2021 at 12:10 AM, MissT said:

I apologize for just seeing this post.     Has anyone ever used "A Place For Mom"?  I think my mother is almost to the point where she needs assistant living. She lives with me now , but she starting to get dementia and though I care about her, I'm not comfortable providing washing and dressing.   Please don't judge me.  I'm a nice person, just not with those things.    I work from home as well and taking its toll on me with no sibling help.  

It’s quite understandable that your mother would need help, under the circumstances.  No one should judge others for getting help for family members.  Trying to work from home and care for a person with dementia can be daunting.
 

 I struggled with caring for my cousin in her home, when she got dementia.  It was not too long before I realized that she needed around the clock professional care.  After a certain point, the person needs hands on care, bathroom assistance, bathing, changing, etc.  Plus, their personality can change and they may be resistant to care.  Sleep disorders are also common.

  I’d explore the options, so you’ll know what is available.  I got so stressed when caring for my cousin, trying to work, etc. that I had multiple health issues that arose. It did take a toll.  It finally improved when I got her placed in a Memory Care facility.  You might get a professional to do an assessment to see what level of care your mom needs.  
 

  I’m providing a lot of care for my parents right now and see that I’ll need a lot more help before long.  I have siblings, but they do not help me.  

 

 

 

 

 

 

 

 

 

 

On 11/6/2021 at 4:10 PM, Absolom said:

A Place for Mom didn't help me and gave out my information all over the place so I was still getting calls long after I placed mom.  Hospice has been wonderful and was great for my dad.  

My cousin eventually went on Hospice.  They were quite helpful.  

[Absolom]

I saw Mom today.  She's been moved into the hospice room at her place.  The caregiver told me she was refusing lunch and wanted to know if I wanted a tray in mom's room to try to get her to eat.  I sat down near Mom to try to talk to her and she rose up off the bed, hit me, and screamed for me to go to hell and never come back.  I smiled and said I'll see you Thursday.  This has happened before and I'm sure will happen again.  Dementia is best treated with a sense of humor and an I'm not getting rattled attitude.  I saw the hospice nurse on the way out and she said she'll have the doctor review Mom's meds as the caregivers have reported increasing episodes like that one.  

[Absolom]

In the continuing saga of mom, she's gone down hill some more.  Her responses frequently are non-sequiturs now and a bit off the wall.  The last few visits she's been more and more agitated and irritable to the last one yesterday where she was out of her mind.  She was fighting the care givers and even tried to bite one.  I'd never seen her or heard about her being that bad before. It's amazing how strong she still is to the point where I'm very cautious around her.  The visit before last she tried to hit me again.  This last time I kept my distance while she was fighting the caregivers.  Alzheimers with psychosis is no joke.  

[supposebly]

This sounds exhausting and heartbreaking, @Absolom. Thank you for sharing. I have a friend who cares for his mother who has dementia. She is however, quite calm and still has the occasional moment where she can communicate that she's aware of what's going on. Still, I don't know how he does it. I can't even begin to imagine how this is for you when she becomes so agitated.

[Absolom]

I can usually kind of laugh it off as she's grumpy today.  It was that it was the worst spell yet and that she kept it up for over 40 minutes that kind of got to me.  Some people with dementia are very docile.  Based on what I've seen that's more likely and the temper tantrum crowd is around 10% or less.  Mom can be very sweet and loving and then she'll turn on a dime and become quite violent.  I'm very firm that it's due to the Alzheimer's with psychosis and try to remember my mother as she was 10 years ago before this hit.  I think that helps.  

[BlueSkies]

On 8/16/2017 at 8:56 PM, tribeca said:

So many people are caring for elderly relatives.   Thought  it would be nice to have a place for us to have a place to get advice,  vent, laugh and get & give support.   

Thanks for starting this thread

While I’m not in this position I’m surrounded by co workers that are.  So yes see firsthand how tiring it can all be 

On 8/26/2017 at 11:34 AM, Blergh said:

You know what my biggest stress is re caring for my 80-something mother? The fact that she still wants to care for ME with the very same attention to detail she did when I was a child and refuses to consider that she can't do everything she used to do as quickly, efficiently or even safely that she once did.  Seriously, I'm VERY grateful that she loves me, wants the best for me  and KNOWS who I am( since I know many folks her age have even forgotten who they were much less who their offspring were). However; I have this fear she'll overdo it and wind up in serious trouble despite the fact that we're connected  even when I'm at work 24/seven thanks to New Millennial technology. I also start get worried if she doesn't pick up the phone in under three rings when I call her. I'm also thankful that she has a great many friends and family she keeps close touch with and is very keen on staying on top of what's going on (though, considering how upset news can get her, I do try to encourage her not to do more than necessary).

I’m not there yet with taking care of the folks but can relate….  Family dynamics are set in stone in my family.  We all have our roles it seems.  Frankly I’m tired of it 

[Blergh]

I got nauseated last night but that's not the issue here.

 Mama was on pins and needles trying to do all she could to help me get better  which I truly appreciate. However, it occurred to me (not for the first time) that, when she's no longer in this world, there won't be ANYone who sincerely cares if I'm under the weather- at least not anywhere close to Mama's intensity

[Bethany]

1 hour ago, Blergh said:

However, it occurred to me (not for the first time) that, when she's no longer in this world, there won't be ANYone who sincerely cares if I'm under the weather- at least not anywhere close to Mama's intensity

I felt like that when my grandfather died.   I guess because I was the first grandchild, I don't know, but when I lost him I lost the one person in this world who loved me completely unconditionally.

[Absolom]

I guess I wasn't up to posting about it.  Mom passed away a couple of months ago.  In the end, she went peacefully.  

[supposebly]

3 hours ago, Absolom said:

I guess I wasn't up to posting about it.  Mom passed away a couple of months ago.  In the end, she went peacefully.  

My condolences.

[Bastet]

4 hours ago, Absolom said:

I guess I wasn't up to posting about it.  Mom passed away a couple of months ago.  In the end, she went peacefully.  

I'm glad, after all the turmoil that constituted her final months, she wound up dying peacefully, and I know there's a sizable extent to which, with dementia, you'd already lost her before she died, but the death of a parent is still profound.  I understand not being ready to share until now, and extend my condolences now that you have.

[ginger90]

My condolences @Absolom.  

[Maisiesmom]

Hi everyone! I'm having issues with my husband. My father died last year from dementia and I think the hubs is getting it too. His behaviours are getting very odd. He sleeps all day, keeps losing things, (cell phone, car keys, identification, won't take care of his mail or paying bills and many other problems. He has fallen 4 times in the past 2 years (two of the falls have had him transported to the hospital). He also won't eat or take a shower and it is becoming very hard to even have a conversation with him that makes sense. Our doctor is aware of this and has him set up with a neurologist but that isn't until next month. He is mobility challenged but won't use a walker or a cane. We have no kids and he has no siblings. His mother also had dementia and would be sweet as pie and then become violent for no reason. I don't know how much longer I can take care of him on my own. He refuses to let someone come and help me (and him) and gets very angry when I suggest this. I'm starting to lose my sanity (I think) am very depressed and pissed off that I have to do everything now. He keeps saying he wants to travel but I can't see how I could take him anywhere because he can hardly walk. I don't sleep well because when I go to bed, he gets up and does unsafe things like setting the toaster on fire or leaving the broiler on all night. Any advice would be really appreciated He is 72. My dad was 94 and his mom was 80 when they died. Thanks for listening to my rant but I am at a loss and would appreciate any advice given. Thanks!

[SoMuchTV]

26 minutes ago, Maisiesmom said:

Hi everyone! I'm having issues with my husband. My father died last year from dementia and I think the hubs is getting it too. His behaviours are getting very odd. He sleeps all day, keeps losing things, (cell phone, car keys, identification, won't take care of his mail or paying bills and many other problems. He has fallen 4 times in the past 2 years (two of the falls have had him transported to the hospital). He also won't eat or take a shower and it is becoming very hard to even have a conversation with him that makes sense. Our doctor is aware of this and has him set up with a neurologist but that isn't until next month. He is mobility challenged but won't use a walker or a cane. We have no kids and he has no siblings. His mother also had dementia and would be sweet as pie and then become violent for no reason. I don't know how much longer I can take care of him on my own. He refuses to let someone come and help me (and him) and gets very angry when I suggest this. I'm starting to lose my sanity (I think) am very depressed and pissed off that I have to do everything now. He keeps saying he wants to travel but I can't see how I could take him anywhere because he can hardly walk. I don't sleep well because when I go to bed, he gets up and does unsafe things like setting the toaster on fire or leaving the broiler on all night. Any advice would be really appreciated He is 72. My dad was 94 and his mom was 80 when they died. Thanks for listening to my rant but I am at a loss and would appreciate any advice given. Thanks!

Oh, hugs.  The only thing I have to contribute is that when my aunt was taking care of my uncle for years after a stroke that left him with a lot of needs, they were able to get some support from the VA (he was a US veteran).  I think it covered an aide to come in and help with some of the physical stuff.  There might be a way to frame it to him as something he's entitled to.  Not sure if that would apply to you or even if you're in the US, but there must be some support groups (local or online) that might be able to help with options.

[supposebly]

1 hour ago, Maisiesmom said:

Hi everyone! I'm having issues with my husband. My father died last year from dementia and I think the hubs is getting it too. His behaviours are getting very odd. He sleeps all day, keeps losing things, (cell phone, car keys, identification, won't take care of his mail or paying bills and many other problems. He has fallen 4 times in the past 2 years (two of the falls have had him transported to the hospital). He also won't eat or take a shower and it is becoming very hard to even have a conversation with him that makes sense. Our doctor is aware of this and has him set up with a neurologist but that isn't until next month. He is mobility challenged but won't use a walker or a cane. We have no kids and he has no siblings. His mother also had dementia and would be sweet as pie and then become violent for no reason. I don't know how much longer I can take care of him on my own. He refuses to let someone come and help me (and him) and gets very angry when I suggest this. I'm starting to lose my sanity (I think) am very depressed and pissed off that I have to do everything now. He keeps saying he wants to travel but I can't see how I could take him anywhere because he can hardly walk. I don't sleep well because when I go to bed, he gets up and does unsafe things like setting the toaster on fire or leaving the broiler on all night. Any advice would be really appreciated He is 72. My dad was 94 and his mom was 80 when they died. Thanks for listening to my rant but I am at a loss and would appreciate any advice given. Thanks!

I'm so sorry to hear that. It sounds like it's already quite advanced. Maye it's time to make that decision to get some help without his input. There must be services where someone comes to the house and helps with things. Or at least have someone there for a few hours so you can take a break and leave the house. I don't have experience with this but I hope you can get some help. Sounds like you need it.

And maybe unplug the appliances over night?

[Maisiesmom]

Thanks for your inputs! We live in Michigan and he is not a vet. He does have a doc appointment soon and I will be asking a lot of questions. I think he will be hospitalized since he looks so bad (gaunt, pale, weak) and maybe they can help me too. It's breaking my heart since we have been together for almost 50 years but he is not the man I married and I'm tired of crying and being stressed about it. Keep us in your prayers and thank you again.

[Browncoat]

Has anyone here tried care.com for help with care for someone with dementia?  Or, really, for anything else?  Are there any hidden things with care.com that might be red flags about using them?

[SoMuchTV]

1 hour ago, Browncoat said:

Has anyone here tried care.com for help with care for someone with dementia?  Or, really, for anything else?  Are there any hidden things with care.com that might be red flags about using them?

I don’t have experience with care.com but it looks like it’s an Angie’s list type thing that tries to connect you with local resources?  I’m thinking it’s only as good as the actual local resource? 

When we needed help for my mom we went with the local franchise of RightAtHome, because a family member knew the owner and could vouch for him. I think any of the franchises are only as good as who’s responsible for the local business.

Obviously there are advantages and disadvantages of choosing an agency vs hiring individuals on your own. Agency are pre screening their staff and you won’t be left hanging if a particular caregiver nopes out, hiring individuals may let you find that gem for less $$. 

Good luck, it’s not easy. 

[EtheltoTillie]

I am so sorry to hear this. I’m an elder care attorney, yes there is such a thing, in NYC. In New York we have a Medicaid program that helps people with care aides at home but even that never leaves the family members without something to worry about. I lived this with my own parents and continue to live it with clients. My work is half counseling and social work, and the other half advocating to get people the help they need.  Please contact the Alzheimer’s Association. They have support group meetings and help people find help. There are people like me in your state too. 

Edited July 10, 2023 by EtheltoTillie

[Browncoat]

Thanks!  Even just having information about how I can go about finding help is extremely useful. My parents live in ground zero of the opiod crisis (Barbara Kingsolver’s Demon Copperhead, though fictional, is accurate), and that makes it doubly hard to find someone trustworthy.