Aging--need for help & DENIAL

Parent Cafe
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<p>A relative who is 89 will be released from the hospital. She just admitted to a relative that this is her SECOND mini-stroke, not the first, which had been widely assumed. She lives alone in a large 3-4 bedroom house with a very sloped lot, with her adult children living and working in CA. She is on many medications and is becoming increasingly forgetful. We are concerned and trying to help figure all of this out. She doesn’t want to bother “the kids,” but I don’t feel they have an accurate idea of her abilities and needs; none of us have a good handle on this. I spoke with a friend who has done some respiratory home care and been involved in other health care, who STRONGLY urges that a relative speak with the hospital social worker BEFORE she is discharged tomorrow. She is still quite fragile and has sustained several falls recently and has great difficulty rising from each, as she has arthritis and other health issues.</p>

<p>I am concerned about that as well as how forgetful she may be in remembering to take her medications or perhaps taking more than intended because she may not remember whether she did or did not take them. </p>

<p>Her brother (mid-80s) is trying to have some system installed so she can push a button or the device will alert if she has a fall. This is rather sudden for us, as she was just hospitalized on Friday and no one is really taking charge. Her good friend has graciously agreed to stay with her for a few nights “until she is settled,” but she is also in her 70s/80s and has her own health problems. Her son has agreed to pay any bills but neither he nor his daughter has come down to assess the situation.</p>

<p>Not quite sure what to do at this point. The good friend does have the phone numbers of both of her children and has been speaking regularly with the nurses and doctors about her care.</p>

<p>Any suggestions from others who have been in this situation. It feels pretty awkward and I’m not sure when or how the adult kids will take a more active role in helping be sure she receives adequate care. They mainly visit perhaps annually or so, and she visits them perhaps as often.</p>

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<p>See if the hospital has anyone on staff for discharge planning. Let them know of your concerns…maybe they will take the initiative of contacting the appropriate family members.</p>

<p>My father had an adverse reaction to some outpatient surgery which propelled him rapidly down the Alzheimer’s path (which he had already been on, though I did not really know it at the time because he lived in a different state than me). It’s a long and frustrating tale, but the gist is that I had to FIGHT the doctors to get them to see that he could NOT be discharged and let out on his own…he needed more help than that. </p>

<p>Someone does need to let her kids know…</p>

<p>this is all so difficult. Prayers for you and your family!</p>

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<p>It looks to me like you are the one who may have to step up to the plate here, and you are just trying to figure out if it is OK to do so. Well, it is OK. Do it. Someone has to.</p>

<p>To start with, I’d encourage you to pick up the phone and call those cousins in CA. They may be completely out of the loop, and they may appreciate having someone on the spot who can give them an opinion about their mother’s situation. If the cousins rebel at the thought of taking responsibility for their mother, then you will be able to determine how much responsibility you are able and willing to take on. The hospital social workers deal with this kind of thing every day. They will have good ideas for you.</p>

<p>Wishing you all the best.</p>

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<p>Call the children. They probably have no idea or may be in denial. I am so grateful to my sister-in-law who called me when my Dad was dying. All I heard from my mother and brothers led me to think it was much less serious than it actually was. They didn’t mean to mislead me, but they did.</p>

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<p>My mother-in-law will be 96 soon. She lives alone, by choice, in her split level house. She is quite frail, has congestive heart failure, is legally blind, and starting to get forgetful. She won’t live with us or her sister because it would be too far from her doctors. She won’t allow a stranger to come in to assist her, and she won’t move to an assisted living facility. My husband’s cousins live nearby, while we are over 2 hours away. They call us asking what we are going to do. Mom is not incompetent and we want to respect her wishes, but we are at a loss as to what to do.</p>

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<p>Is she going to get PT or home health after she returns home for any rehab?</p>

<p>If so, part of their job at each visit is to assess for safety.</p>

<p>Yes, the discharge planner at the hospital should be aware of this, but until the relative actually DOES forget when she did or did not take her meds and it creates a problem, there’s not much any outside agencies can do. If it’s clear her strokes are due to her not taking current medications properly, then the discharge planner (usually a nurse on the unit, although the social worker is typically also involved) needs to know this. It will then be up to her, then to inform the family that the situation requires more ongoing, long-term oversight.</p>

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<p>mattmoosemom - One of the things that’s difficult to do as adult children is watch our elderly and frail parents make choices that we would not make for them. And sometimes the consequences are that they face death sooner rather than later. But it’s their choice. Unless they’re doing something that endangers the safety of others, they can pretty much make their own choices. </p>

<p>I suspect the cousins are feeling sort of put upon, even if they are not involved in her day-to-day care. They know that they are likely the first responders if/when something happens to her, and they may feel an impending burden. They may also be of the mindset that you step in and make choices against your MIL’s wishes, but you will have to make it clear that you only want to honor your MIL’s wishes and will do so unless it endangers the lives of someone else.</p>

<p>It’s hard to compromise on the level of help someone should get when family members are in disagreement and/or feel burdened. They might just need permission to accept whatever consequences arise if the MIL refuses intervention and something happens, and reassurance that you won’t hold them accountable for anything.</p>

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<p>Also meant to add… if and when I get to 96 (or 80 for that matter), I sure think it’s my prerogative to decide whether or not I want to stay in my own house, even if it means my life may be cut shorter. When we get to that age, I think we sort of earn the right to make these kinds of decisions… again, as long as we are aware of the consequences (including consequences of family members setting boundaries on what they will and won’t do). Give me my options, with possible consequences, and let me make my own decision.</p>

<p>Most elderly parents will take into consideration their adult children’s feelings about the situation, but for those who aren’t willing to, that’s their choice with its own set of consequences.</p>

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<p>moottmoosemom, How does she get her food and prepare meals? Who cleans her home? How does she change her sheets? Shower? Does she pay her own bills? It seems like it is becoming a very hard situation. </p>

<p>I have a friend who travels 2 hours every weekend to do the grocery shopping for her mother. It seems pretty hard since my friend works full time. At this point her mother does not leave her home on her own. I don’t know when she sees daylight. She is mentally fine, but a bit unstable when walking.</p>

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<p>There is a point when the roles can comfortably switch: children become parents and parents children. There is no disrespect to it just responsibility. In my sister’s and my case, our parents were 94. For me it was a sad thing. We took our responsibility for them completely until the end of their lives. It was like a five year process and I would do it over and over again. I learned so much about my parents and myself. Contact the children, would be my suggestion.</p>

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<p>I am with my mom about 18 hours. Share care with younger sis who comes down on weekends. 94.
My sister is on a trip to make arrangements for MIL with the big A. ~87
My bro spends weekends with MIL with big A. Shares care with 2 SIL. ~90.
My DW is watching her mom at our home. 90.
My father luckily has a young wife who is watching him. 91.</p>

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<p>I don’t really agree with this. While many elderly may think they are independent, oftentimes they are dependent on others, and thus they should take others into consideration when they make decisions. On the point of “dying sooner” because the elder prefers to stay at home in an unsafe environment. Is it really fair for a relative or neighbor to find them dead on the floor because “that’s what they wanted?” I think it’s selfish, quite frankly. I have a similar situation with my father who lives alone quite a distance from any of his children. We are trying to convince him that he needs to live closer to someone. He says that it’s “his choice” and he’ll do what he wants. Well and good, but that means when he has a healthcare crisis (fairly frequent nowadays), someone faces a flight or a long drive to care for him. We are not the kind of children who would neglect their parent, yet he’s put us in a very difficult situation.</p>

<p>We should all understand that everything we do affects others - few people live in such an isolated world that they shouldn’t take the convenience and wishes of those they love into consideration. When I reach that age, I plan on making things as easy as possible for my kids.</p>

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<p>Thanks for all of these thoughts. They are much appreciated. I don’t know whom is able or willing to step up for this relative, as none of us has an accurate picture of her abilities and needs. All of her nieces and nephews in HI are living their independent lives, as is her brother & brother’s wife. She is very set in her ways and likes everything “just so,” scared to live alone but very fearful of “strangers.” </p>

<p>Will try to have discharge nurse speak to her brother & perhaps her kids as well. Her brother and friend will help with her discharge. One of her nephews is also involved in speaking with her son in CA. The son is pretty responsive (willing to pay for whatever his mom needs) but doesn’t know have a good picture of his mom’s current condition; none of us are qualified to assess but are all concerned about how frail & forgetful she appears.</p>

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<p>oops, HIMom, crossposted; I wrote all this before you posted the above! Hope some is relevant still:</p>

<p>This is a long reply because it is such an important, complex topic; like rearing children, really.</p>

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How much is “any bills”? I think I’d be zooming in right here to see if son will buy some visiting or live-in help through a bonded domestic agency recommended by the hospital. Sometimes they don’t recommend but have lists of agencies in the area.</p>

<p>It’ll be Expensive. Do-it-yourself hiring and supervision of help is out-of-the-question here and don’t accept any such responsibility. The distant children may need to be told that, while ad hoc help costs less (as the children may quote you lower costs of friends who do the hiring themselves…) anyone who goes that route knows the hiring, monitoring, and re- re- hiring is the hardest part of finding lower-cost local help ad hoc. (ETA: It’s so expensive that sometimes is the thing that pushes people to choose continuous care/assisted living as it costs less, all told, than 24-hour help at home.) </p>

<p>I have come to understand Teriwtt’s responses, which might be surprising to some. The independence and “pluck” we admire in older people can be a mixed blessing at this stage. Their self-sacrifice “not to bother the children” can be coy and cause enlarged problems that might have been prevented. But they don’t always choose the fuss of intervenors, so do die sooner if they, for example, fall…and then one thinks, “if only I had moved her to an independent living complex sooner…” </p>

<p>As an out-of-town daughter with 2 brothers living right in the town of our mother, I at least was able to fly in and be a stimulator of change when we all wanted her to move from her “big house.” Understand that her house may have so many memories that, to her, supercede the safety concerns. The key is "independence’ so convincing someone they’d be more independent (not “safer”) in an assisted living setting sometimes is the way to talk. In my mom’s case, what worked was a longer-than-usual visit, around 3 years after my Dad died, in which I simply sat with her until she listed and decided all the things wrong she wanted to fix iin her life. If your neighbor is able to travel to visit children, she’s probably reasonably capable and might be engaged to figure this out for herself. I found my mom had been thinking along these lines, but it took a visiting relative to help her assess her own situation and give her some courage to move forward. She chose her own place to live. This neighbor might be more at that stage now. </p>

<p>I’m wondering if you can speak to the children by phone and give them some grace by saying that your call is voluntary because you recognize that their mom doesn’t want to share any problems with them, which is unfair to them. You may be surprised to find they agree with you. And take it from there, suggesting a longer visit by one child to work with mom on her current status. When a couple visits, she’s more likely to put on the show and take care of them. A long, slow visit by just one child also allows the staying home spouse to keep up all the middle-aged obligations longer if there are young children to care for at home, to lengthen the stay of the other partner. </p>

<p>Meanwhile, the children should absolutely be on the phone at this departure moment to talk to the discharge planner. They might be able to sway her to have more visiting nurse care or PT. </p>

<p>She might need training on how to use a medicine-dispenser box with days of the week, and even times-of-day, to dispense her own meds from there and not pill bottles. You or the helpful brother-on-the-call-bell might be the one to buy her those kinds of at-home devices since he sounds like a fix-it kind of guy. They’re available at pharmacies; shop pharmacies a bit for the various styles depending on how many pills she takes daily. </p>

<p>The brother might visit once weekly to fill the pillbox for the coming week,following directions from each pill bottle. Less confusion for her, plus it shows her when she forgot a dose because it’s still sitting there screaming, “Monday Afternoon.” There are also little beepers to remind her to take pills the brother might set up for her now. A PT or visiting nurse might list for the brother many hardware devices, such as installing bathroom railings, to help in this inbetween time. If the brother can’t install, a professional handyman with bill sent to the children might be better. Good luck to all and good for you for caring.</p>

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<p>First I would like to say HImom, best wishes for a good resolution for your relative. I understand your dilemma.</p>

<p>Some answers to questions about MIL. She did all her own cooking up through last year. In January she reluctantly agreed to get meals on wheels. We bring her food when we visit, and her nieces bring food, too. She has a cleaning lady come in twice a month, and we clean when we are there. She only agreed to let us clean recently. She still won’t let me change her sheets for her. She uses a shower chair, and hangs on to a walker to get out of the tub. We fill out her bills when we are there, and she asks a neighbor when we are not. We offered to pay her bills for her online, but she has refused that help. She wants to be in control, and doing what little she can gives her purpose in life.</p>

<p>She has a weekly pill box, and will not let anyone else fill it for her, even though doing so is mentally exhausting.</p>

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<p>Thanks–will send the son the name & contact info for the social worker who has just been assigned to her case. She’s new and according to the nurse, the record doesn’t show whether there will or will NOT be a discharge today. Have just spoken with the brother about this and given him the info and think I’ll call the son & share the info with him as well.</p>

<p>The brother says she’s very stubborn and would NOT want to be discharged to a extended care facility for further rehab while she regains her abilities to live alone and I told him that the concern is her being SAFE. In her current condition, it’s not clear that her living alone would be SAFE and he’s starting to think about that as well. I also mentioned to him that financially (for insurance), it is often better to be discharged from hospital to an extended care place than home and then to an extended care place.</p>

<p>He’s not happy, but is mulling all of this over.</p>

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<p>We might need some professionals in this area to chime in, but isn’t part of the discharge process asking the patient: Who there at home to help you - regularly and on an as-needed basis? </p>

<p>IME, some elders play it both ways down the middle. They tell the hospital “I have my brother and he’ll do anything for me” when in reality she won’t let the brother help her enough or he’s not as available as she imagines. </p>

<p>I wonder: Should the brother call in to give a real feedback to the social worker as to what he can/can’t/will/won’t be allowed to do? My mom was always telling people about how “everyone” would come to help her, including her neighbors who “always” looked in on her. It wasn’t true, but it was a way to fend off social workers/insurance from advising her to more professional care…</p>

<p>HIMom you have great communication with this family at a key moment. You are a neighbor to be admired, praised … but not overused :slight_smile: Sounds like it’s worth a busy day for you here. As neighbor you don’t want to see her frail and on less-than-solid footing. It’s nervewracking.</p>

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<p>I just sent an e-mail to the CA S & D. I know that this woman is very independent and will probably be chewed out for sharing the info, but know that it is not easy for her kids only to get bits & pieces of info. I don’t think either has ever lived with her long enough to get a good picture of her health–they only stay about a week or less and are rushing all around which is not her normal routine. Also THEY drive, not her, while she is the one who usually drives.</p>

<p>I think part of the issue is that her brother IDs with her and doesn’t want her treated any differently than he would want to be treated, tho he works full-time & she’s been retired & more forgetful for decades. Hard to know how much people will step up if they are only given bits & pieces of the picture. He also lives with his wife & ALL his kids live in HI.</p>

<p>Had a longish chat with the brother just now & he now has a better understanding of the key role the social worker will play and how to work with her to be sure that the best possible options are available for his sister.</p>

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<p>And most elderly parents do make it as easy as possible on the children and/or there’s some sort of compromise. But there’s a lot of tough, old cookies out there who have spent their lives doing things their own way and who will not change in these circumstances. Those are the people I’m speaking of. In these situations, the family lays out the consequences of someone being stubborn and uncompromising, and if you’ve spent way too much time and money traveling back and forth and missing work, etc. due to parent’s rejection of help, then you tell them that you can’t keep making those trips as frequently if the parent won’t take ownership in the problem. And there’s no guilt to be had. And the family has to accept their choice to make that decision. </p>

<p>The rate of non-compliance in elderly parents is much larger than you think, which leads me to believe that perhaps they know something about how they want to live the last years of their lives, better than I do. Even if someone has live-in help, moves to assisted living, etc., if they have non-compliance in their blood, they will continue to push the limits. I’ve been in many, many different nursing homes and assisted living facilities and have heard every which way possible for a resident to be non-compliant, leading to some sort of health crisis. That’s why I think there must be something to their experience that I can learn from… what it’s like to lose independence whether it’s gradually or suddenly. </p>

<p>It has been almost seven years since my mom died - she had a history of chronic health problems as long as my arm and my dad had died 2 1/2 years before her. She stayed in the house for just over a year before deciding she couldn’t do it on her own. She thought she didn’t want live-in help so she chose an assisted living facility. And yes, she did OK there (and actually was one of the compliant ones), but it almost broke my heart when I saw a cousin (who saw my mom more frequently than I did due to geographic locations) who told me that my mom eventually confessed had she to do it over again, she would have stayed in the house. It makes me wonder who intentionally (or not) ‘led’ her to choose assisted living. My mom was never one to choose conflict, so I’m sure whoever (another family member) convinced her (because it was more convenient for them) had an easy sell. Because I lived so far away and was not involved in the day-to-day care, I always deferred to my family’s choices. </p>

<p>Anyway, I’m sorry if my opinion seems so harsh. I think we often have a prescribed view of what the last few years of our parent’s lives should look like based on how our society used to deal with these issues, but in reality, with so many people scattered across the country, it is not as easy as it used to be (not blaming this on anyone).</p>

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<p>Terriwtt, your comments reflect our thinking. That is exactly why we don’t “force” Mom to do what we think is best. She is choosing how to live out her final years. We help as best we can, and she has control over the little bit that is left in her life that she can still do. She is outliving all her friends, has lost siblings, a husband, the ability to see (mostly), drive, etc. Who are we to take what she has left? </p>

<p>She has macular degeneration, and can see a little bit. I think staying in her own house which is very familiar is helpful.</p>