Longterm Planning For An Elderly Parent In Crisis--Advice?

[yolland]

Apologies if what follows is rambling--as some of you already know, keeping it concise is not my forte...

My 72-year-old mother has lived alone in Florida (my father died long ago), almost a thousand miles away from her nearest child, for several years now. As far as we and her doctors know, she was in excellent health until late last week, when she went to her local library and, for unclear reasons--perhaps weakness from a recent flu--apparently fainted while going down a flight of stairs, and fell the rest of the way. The library staff called for an ambulance to take her to the hospital, where the doctors determined that she'd sustained a fractured skull, a fairly large subdural hematoma (bleeding into the brain from veins in the outer meningeal layers), and some bruising of the tissue beneath the hematoma. While having no recollection of what had happened or even of having been at the library, she was apparently cogent enough to listen to and understand her medical options, and consented to emergency surgery to drain the blood. The surgery was successful, and the swelling in her brain had begun to reduce within 48 hours, by which time my younger brother--the only one of us in a position to temporarily drop his job obligations on short notice--had flown down there.

Since then I've been checking in with my younger brother daily, and also talked to all my other siblings (there are 5 of us) at least once. I'm trying to cobble something together with my colleagues where I could extend my spring "break" early next month to two weeks instead of one--so as to "spell" my brother, as well as see the situation for myself--but, for the time being, I'm limited to trying to piece together what's going on and what we collectively need to do via back-and-forth phonecalls to four different people with four different takes on the situation. And it's driving me nuts.

My younger brother is a one-thing-at-a-time sort of guy and seems to be operating strictly in crisis mode at this point, i.e. focusing all his energies on spending his time at the hospital and trying to be optimistic about my mother's progress. He's talked a little to the doctors, not at all yet to the social worker they've apparently(?) got lined up, and at least when I talk to him, makes everything sound fairly hopeful--She was up and walking around a bit today! Ah, sure she's a bit confused and cranky about the restraints they've got her in, wants to get up and leave with me when I leave, but hey, so-and-so I knew was like that too after his concussion, and he healed up just fine! Meh, the nurses say she was 'hallucinating' about what they were trying to feed her, but I think she may just have wanted healthier food and they misunderstood... etc., etc. But then I talk to my oldest brother (who hasn't seen her yet, but is a clinical social worker with some experience with brain injury patients, and has talked to the doctors more than any of the rest of us) and he's painting a much grimmer picture: ...I've NEVER seen a subdural hematoma patient regain full mental competence--their short-term memory's devastated, they get fits of rage and CANNOT be trusted to be responsible for themselves; yeah, she may well improve significantly relative to where she is now, but I think Reuven's just seeing what he wants to see...She's gonna need weeks of in-hospital therapy just to regain the basics, and we need to be planning NOW for getting power of attorney, selling her apartment, and getting her into a facility where she can have round-the-clock oversight and someone helping her daily with basic self-care... etc., etc. And my next oldest brother and younger sister are basically just going, Ummmm...I'll help out however I can???

Mostly, I guess I just need to get down there as soon as I can, so that I can see for myself what the situation is before I go signing any papers and "committing" her to anything. My gut feeling is that my oldest brother's take is *probably* closer to the truth, and his ability to think clinically and quickly plot out a plan of action may well prove invaluable very shortly; but I'm just not comfortable making decisions of that magnitude until I see for myself what shape she's in. Of course I would really, really like to believe that my younger brother's optimism is also warranted, that maybe she could move in with my family, or perhaps even continue to get by down there with hired help...but, I'm not going to count on that, and I'm trying to steel myself for the possibility that I'll arrive down there to find that the person I remember is more or less gone and may never be coming back.

Has anyone else here had experience caring for a brain-injured relative before? And/or more generally, does anyone have advice on how to go about planning for longterm care for a parent whose health and lifestyle prospects have suddenly taken a turn for the worse...who should we be prioritizing talking to, what do we most need to be asking about? I would really appreciate any pointers or advice.

 

[Sicy]

I dont have experience yolland but I just wanted to say I'm very sorry about your mom

I think though at that age + the injury, it might be a good idea to start thinking of moving her somewhere safe where she will have care, whether that be in a medical facility or with one of your siblings. Good luck.

 

[KhanadaRhodes]

i've got some experience with this sort of thing. it's not the exact same thing, but my grandma had to come live with us after her husband passed away. she's had strokes that went undiagnosed (she's very old-fashioned and anti-doctors) and is now experiencing possible early alzheimers or dementia. there's other stuff too but it's not important for this post.

since your younger brother is the one who's there with your mother right now, if at all possible i suggest he talk with the doctors some more to see if he can get a good idea as to what the doctor's prognosis is. like you said he hasn't been talking to them much so he's just going on his opinion, but at some point long term care will have to come into play. i have no medical experience, but i'm sure there will at least be some lingering effects from what happened to her, even if it's just that she gets headaches from time to time or something minor.

i do agree with sicy, that moving her to a care facility wouldn't be a bad idea. as long as cost isn't an issue and you can get her into a good one. i know how shitty the places are that are just covered by the government.

you and your family will be in my thoughts and prayers, and if you ever need advice, especially once it becomes more clear how she actually is, feel free to contact me.

 

[Lila64]

I don't have any answers either, yolland. Sorry to hear about your mom. Sounds like your older brother may, unfortunately, have the more "real take" on the situation. Your younger brother may be more optimistic & just hope everything will be okay. I think others in the family, whether it is you or other siblings should be there to make a more informed decision as to what the next step will be. If she needs to move to an assisted living facility or have live-in help, it might be best she do that somewhere closer to at least one of her children.

 

[BonosSaint]

 

[Liesje]

Sorry to read this, yolland. I hope it works out so you can extend your spring break.

I don't really have much advice. We just moved my grandma into a home last week, even though my grandpa is alive and well. The problem was that he gave himself 4 hernias caring for her and did some pretty serious damage to his intestines and such, so he is no longer allowed to be her caregiver. Lucky for us though, a few years ago we convinced them to move into a new condo that was financially attached to the nursing facility, so that if something happened, they would have higher priority getting into the nursing home and not have to wait. It still sucks, but grandma needs 24/7 care now and my grandpa near killed himself trying to do it. I'm not sure exactly how it happened. I believe a rep from the nursing facility came over and "tested" my grandma physically and mentally, in order to place her in the right ward. But again, they were already in the system of the home they picked out.

 

[PJW]

Hi Yolland,

I'm so sorry to hear about your mother. While I don't have any experience of someone with a brain injury, I do have a grandmother who has dementia (not Alzheimer’s) as a result of suffering many small undiagnosed strokes, which, while not quite the same as the bleed that your mother has had, is quite similar, and from what your older brother has described can lead to similar outcomes.

My suggestion is that you start looking into all the things your older brother suggested – power of attorney, a nursing home, etc – so you know what to do if it does turn out she is no longer capable of taking care of herself. It is better to make these decisions early, when there is still time to think about them, rather than being forced to take the first nursing home place that comes up because she has nowhere else to go and the hospital won’t keep her in any longer. I know people whom this has happened to, and, even though they’ve been unhappy with the home in which the relative has ended up, it is impossible to get them a place in another.

Here in Australia, there's a system called 'aging in place', where certain nursing homes take a patient and continue to care for that patient as they worsen - ie, as symptoms worsen and the ability to care for oneself diminishes, they step in with more and more help without having to move the patient to a new setting, which often causes even more confusion and distress. I would suggest that you look into whether a similar service is available in the states, as while I cannot comment on your mother's likely recovery, I would say at the moment it is best to prepare for the worst and hope for the best.

One other thing – if you do decide to have her move in with your family, keep in mind that this may need to be reviewed down the track. My father was horrified when my mother said no to my Gran moving in with them a few years back when she could no longer live on her own (Gran is my mother’s mother), but can now see why, as the strain it would have placed on both of them, and their marriage, would have been immense. The strain of having her in an independent living facility was bad enough, as they still had to do a lot of running around for her.

Talk to the doctors, talk to the social worker, get second opinions. See if there is a dementia association or similar for people with acquired brain injuries, as they’ll be able to give you some good advice based on other people’s experiences. And above all, remember there will be good days, and some really bad ones.

Good luck,

Penny

 

[Carek1230]

Sorry to hear about your mom. Altho circumstances with my 73 yr old mother aren't exactly the same as with yours, my only sibling, a younger sister in Portland OR and I are faced with dealing with our mother whose health is failing. So I can completely relate with what you and your siblings are faced with. My advice would be first for all 5 of you to be communicating and sharing the info you gather from doctors and the different avenues you are faced with regarding your mother and her care. I've known friends in similar circumstances who took turns staying with the parent in hospital and out so the whole burden and responsibility did not lie on just one sibling. It is also easier to have at least one of you as near as possible to wherever your mother is being treated. Keep in mind if she is going to be placed in a long term care facility would it be possible to choose a place near to one of you and not necessarily near to where your mom lived? It is also so important to have open communication with the doctors so that they can keep you apprised of your mother's prognosis. If you have problems connecting with or communicating with the doctors, every hospital has a patient liason department so don't be afraid to seek out any and all help the hospital staff can give you. Does your mother have anything in writing, a will or trust of some sort outlining her wishes regarding any kind of long term or nursing care?

With my mother who lives half way between my sister in Portland and myself in So Cal, I contacted the local Senior Community Center near our mother and spoke to a very nice woman who is an adversary to seniors. She was a wealth of information in all kinds of respects, it's just unfortunate our mother is so very stubborn and is currently refusing outside help. Be resourceful and not just in the town where your mother lives....check in your area as well as have your siblings check in their respective areas for long term care facilities, and any kind of service for the elderly or for seniors. Just speaking to someone in social services can be of great help. Just be patient, listen carefully, ask questions and take notes.

Many Employers today are adding senior care and support in their Employee Assistance Programs. Perhaps you might have something similar available through your employee benefits or one of your siblings might? Just another suggestion and resource.

My mother hasn't been the same since my father passed in 1993. He had a blood clot in the brain, ended up vegetative/comatose and after 2 weeks we chose to disconnect him from life support. It was the most difficult experience I've been through in my life. Over the years my mother has done her own healing, unfortunaytely more with a bottle of vodka than of healthier means, and she is now battling breast cancer and other health issues and becoming more and more stubborn. She refuses to move out of a split level home she's lived in for 40 years, she only goes out once or twice a week. She doesn't eat well, she has isolated herself from neighbors and has had 3 nasty falls in the past 9 mos. It hurts to see her basically killing herself, but no matter what tactic we try or how much we talk to her, she just refuses any help at all. She refuses to be placed in a long term nursing facility which is her worst fear. My sister and I don't know what else to do.

It is very difficult witnessing a parent come to the end of their life like this. My thoughts and prayers are with you and your family. Feel free to PM me if you like, I'm pretty resourceful and might be able to help you in some way. Take care of yourself and be strong.

 

[BluRmGrl]

Yolland - I can't offer any advice, but my heart does go out to you & the rest of the family. You're facing some difficult decisions and I'll keep you in my prayers.

 

[anitram]

Sorry to hear that yolland.

I have no experience dealing with somebody who had a brain injury, but I was a full time caregiver for my grandmother at one point, and she was in very advanced stages of Alzheimer's. She has been in a home for a while now, because we could no longer provide the medical care she required.

The first thing really is the legal part of things. You guys should talk about who should have power of attorney and who should be her substitute decision maker with respect to medical decisions. Depending on her recovery, she may or may not be competent to consent to her own treatment, and in any event, may not make the best decisions for herself. This should probably be somebody who can be physically near her, because I think it's always best for the person to have a good sense of her needs, and the rate of deterioration and how she's reacted to different meds before, etc. Also, as was the case with my maternal grandmother, we quickly realized that her least favourite child (it sounds awful to say, but they clashed their entire lives) should not be the one in charge of her care. Not because she wasn't doing an amazing job, but because my grandmother just became very difficult and combative. So if there is a sibling of yours she is particularly close to, maybe that person may be best.

If it becomes obvious that she needs care, then you have to ask yourself about location. I know it was very difficult for my Mom to travel thousands of kilometres to see her mother many, many times in the year before she died. And from your Mom's point of view, where will she be happiest? Where does she have friends, family, a support system, etc?

I wish you all the best.

 

[BonosBaby12]

Im really sorry about your mom Yolland Wish I could offer some advice to you. Agree however with those who suggested the power of attorney. We are facing that decision right now with my grandmother who appears to have Alzheimer's.

 

[kellyahern]

Yolland, what part of Florida does she live in?

Depending on the county, there may be a local Area Agency on Aging that can assist you in finding the resources you are looking for.

The state of Florida has a website that has a lot of information and links to different resources.

http://elderaffairs.state.fl.us/

The elder helpline number is a good place to start.

If you or one of your siblings decide that moving your mother to live closer to one of you is the best option, see if your state has a department of elder affairs or if the county in which you live has an Aging Services department. They can help you find out what services are available in your area.

 

[yolland]

It is better to make these decisions early, when there is still time to think about them, rather than being forced to take the first nursing home place that comes up because she has nowhere else to go and the hospital won’t keep her in any longer.

...Here in Australia, there's a system called 'aging in place', where certain nursing homes take a patient and continue to care for that patient as they worsen - ie, as symptoms worsen and the ability to care for oneself diminishes, they step in with more and more help without having to move the patient to a new setting, which often causes even more confusion and distress. I would suggest that you look into whether a similar service is available in the states, as while I cannot comment on your mother's likely recovery, I would say at the moment it is best to prepare for the worst and hope for the best.

One other thing – if you do decide to have her move in with your family, keep in mind that this may need to be reviewed down the track.

Yeah, it's really only now dawning on me how quickly we need to move on this. I don't think we have 'aging in place' nursing homes per se in the US, though some larger facilities do have different areas for different levels of care and patients can transfer between them, which at least is less disruptive than having to relocate to another facility at another site altogether.

Having her move in with me or my younger brother (no one else is really in a position to do that, I think) would be contingent on how much special care she might require, and also--since we both have young children--on how emotionally volatile she seems to be. But you're right, even if that winds up being the plan we'll need to be open to the possibility of review.

It is also easier to have at least one of you as near as possible to wherever your mother is being treated. Keep in mind if she is going to be placed in a long term care facility would it be possible to choose a place near to one of you and not necessarily near to where your mom lived?...If you have problems connecting with or communicating with the doctors, every hospital has a patient liason department so don't be afraid to seek out any and all help the hospital staff can give you. Does your mother have anything in writing, a will or trust of some sort outlining her wishes regarding any kind of long term or nursing care?

Many Employers today are adding senior care and support in their Employee Assistance Programs. Perhaps you might have something similar available through your employee benefits or one of your siblings might? Just another suggestion and resource.

Unfortunately her will doesn't address wishes for longterm care, no. But thankfully several of us do have elder care support through our employers.

I do think that if we wind up placing her in a care facility, then it would almost certainly be one near one of us. Unless she recovers so well as to need only the most minimal help, in which case I suppose we could give her the option of staying down there. Unfortunately that's not looking too likely right now.

My mother hasn't been the same since my father passed in 1993. He had a blood clot in the brain, ended up vegetative/comatose and after 2 weeks we chose to disconnect him from life support. It was the most difficult experience I've been through in my life. Over the years my mother has done her own healing, unfortunaytely more with a bottle of vodka than of healthier means, and she is now battling breast cancer and other health issues and becoming more and more stubborn. She refuses to move out of a split level home she's lived in for 40 years, she only goes out once or twice a week. She doesn't eat well, she has isolated herself from neighbors and has had 3 nasty falls in the past 9 mos. It hurts to see her basically killing herself, but no matter what tactic we try or how much we talk to her, she just refuses any help at all. She refuses to be placed in a long term nursing facility which is her worst fear. My sister and I don't know what else to do.

It is very difficult witnessing a parent come to the end of their life like this.

I'm so sorry to hear that, that must be very painful to watch. My father died suddenly at 49 of a brain hemorrhage as well, that was more than 20 years ago now though and since my mother was still raising three of us at the time, she had to keep herself reasonably together, which she more than did. She is also stubborn and, up until now, I had worried from time to time about how we'd ever get her to give up her independence if and when she should gradually but unmistakably become senile or feeble or so forth. Hadn't quite anticipated the dilemma arriving in this form though...

As you say, it is very difficult seeing how self-destructive elderly people whose health is in decline can be when their independence is involved. I can certainly understand the dread of the finality of being "stuck in a home" though...I think we all can. I hope that if and when that time comes for me and it's a situation where my children can visit me regularly but not care for me full-time themselves, that I'll be able to accept reality and make the best of a new situation, rather than subjecting them to chronic fear that I'm going to have some horrid accident or worse that wouldn't have happened if I'd had proper support.

Also, as was the case with my maternal grandmother, we quickly realized that her least favourite child (it sounds awful to say, but they clashed their entire lives) should not be the one in charge of her care.

Which unfortunately would be me in this case...*sigh*...Yeah, that concern has flitted through my mind, and if they're willing and a caretaker is called for, it might well be best for her to be with my younger or my next oldest brother. But, we'll do what we need to in the end...

Yolland, what part of Florida does she live in?

Depending on the county, there may be a local Area Agency on Aging that can assist you in finding the resources you are looking for.

The state of Florida has a website that has a lot of information and links to different resources.

http://elderaffairs.state.fl.us/

She lives in Fort Pierce. Thanks so much for the link--having Googled around a bit, it looks as if (as to be expected, I suppose) most if not all states do indeed have some such agency. But at the risk of endorsing stereotypes, I'm guessing Florida's are particularly good, which if nothing else is a reassuring thought in terms of who we'll be working with, at least initially. My brother seems to be very impressed with all the people at the hospital at least.




Thanks so much for all the advice and support everyone. Hopefully the social worker down there will be able to guide us through a lot of this stuff, but for me it's really helpful to not be walking into this blind with no sense of what options to ask about.

 

[Carek1230]

Glad to hear back from you, Yolland and thanks for your comments. It sounds like you and your siblings are doing your homework and that's the best thing for the moment, so you aren't blindsighted completely...do keep us posted. Continued supportive thoughts though

 

[joyfulgirl]

So sorry to hear about this, yolland. I had a similar experience some years ago when my mother fell and broke both of her wrists. My sisters and I all had to take our turns taking care of her, putting our jobs and lives temporarily on hold. Now she's in the early stages of Alzheimer's, so my sisters and I are dealing with that, but I really have nothing to add to the good suggestions already here. My sister who lives close to my mom has assumed power-of-attorney and is handling all the major details (with input from me and my other sister), partly because she's close by, and partly because she's just a really good take-charge kind of person. My other sister and I trust her judgment and don't get along well with our mom. But it's really, really hard, and since my mom is otherwise healthy, I feel we're only at the beginning of this long road. I wish you well. Take care of yourself, too--boost your immune system and do whatever you have to do to relieve stress.

 

[KhanadaRhodes]

i definitely second/third/whatever getting someone put in place to be power of attorney asap. with my grandma's situation it demanded it pretty much as soon as her medical diagnoses started piling up, and if her state of mind improves at all to where she can think cognitively, i'd definitely suggest altering her will to add a bit about long term care in situations like this or getting a living will or something. of course if that's not possible that's no big deal, then you guys will just have to deal with things however you think she'd want it handled.

let me just give a bit of personal advice and say to avoid having her come live with any of you unless it's just not financially possible for it to be any other way. you don't want to bankrupt her or any of you guys for her to be in a care facility or put her in a subpar place where it's fully covered, but i can attest it is a handful taking care of an elderly person. i wouldn't put my grandparents or parents in a government facility if it sucked, but taking care of someone full time is a huge task, even if you're not working.

good luck with everything.

 

[martha]

i i wouldn't put my grandparents or parents in a government facility if it sucked, but taking care of someone full time is a huge task, even if you're not working.

I'll second this. A close friend is taking care of her invalid grandma in her home, and cannot leave the house without pre-arranging in-home care for her. There are no spontaneous plans anymore, and the expense of an outside care-giver just for a few hours makes her really think twice about doing anything that requires a leaving home.


Sorry about all this, yolland.

 

[joyfulgirl]

Fortunately my mother is in the early stages of Alzheimer's so she is able to participate in these decisions. My sister had a family meeting with her family and asked her husband and four kids how they would feel about grandma coming to live with them. They have the room and the means to take care of her. The kids all said yes, which shocked me because my mother is very difficult. She's not exactly a fun grandma who spoils the kids. She's cranky and stubborn and angry with an occasional sweet side. So when my sister presented the idea to our mom, she said absolutely not. She wants to go into the facility near her house where a lot of her friends are. My sisters and I find the facility horrible and don't want her to go there but she will not hear of leaving her hometown and moving in with my sister in Richmond. And frankly, I'm really relieved for my sister's sake.

 

[Carek1230]

Isn't it sad that in this country of ours we aren't better prepared or the country better able to assist in dealing with those requiring long term care or just providing for our elderly?

 

[yolland]

A little update (I should probably really use my journal for this kind of stuff)...my oldest brother was able to fly down there just for the weekend, and called me this afternoon to share his impressions so far. It wasn't very encouraging-sounding. She didn't recognize him at all; he had to explain to her who he was. He asked her how her head got hurt, and she looked at him blankly for several seconds before finally saying, "I think the doctor did something to my head." She can sign her name and recognize individual written words, but can't read or write an actual sentence, because the needed analytical/comprehension skills aren't there. She cannot tell time. Her speech is thick and slurred and hard to follow. She remains uncooperative about eating. He spent several minutes talking to the nurse (with my mother there listening) about my mother's years of teaching in New York and Florida, her having raised five kids, that she's an accomplished sculptress etc., and "she smiled a little while I was saying it, but I don't think she fully recognized what I was talking about." On a somewhat brighter note (I guess), he disagreed with my younger brother's impression that "she seems irritable just beneath the surface a lot of the time," and felt instead that that "irritability" is probably just wariness towards everyone who comes to visit or work with her--which makes sense, because after all she doesn't fully understand who anyone is or what they want from her, so she's feeling guarded and unsure. Even if she remains prone to occasional combativeness, if anything her general emotional affect seemed "muted" to him, he said. The way he summed it all up was: intellectually, she currently seems to be at about the level of a two-year-old--a normal two-year-old who's alert and wants to participate, but often lacks the cognitive and analytical skills to follow through on that the way they'd like.

The good news (sort of) is that yesterday they moved her without incident to a rehabilitation facility for brain-injured patients. I had previously been under the impression that her rehab would take place in-hospital, but apparently this is a place where people stay more or less indefinitely and/or until their families move them elsewhere, or they recover enough to be OK on their own. So while we still need to get power of attorney secured and initiate arrangements to sell her apartment soon, it sounds like we've got a bit of breathing room to allow her doctors to determine some sort of prognosis for her, which they're firmly resisting doing at this point ("It's just too early"). No one's expecting miracles, but that still leaves a lot of ground in between the state she's in right now and "normalcy". The fact that she's starting from such a low level, plus her age, almost certainly means she'll require a fair amount of oversight and assistance, no matter what. But, there's a big difference between the intensive level of care she needs right now and what she might need if, e.g., she recovers her grasp of who she is and what she's done, while also recovering enough cognitive skills to articulate her desires and seek assistance, even if still not competent to, say, cook or clean for herself safely.

Given what looks to be the possible range of prognoses, I think it's extremely unlikely that it'd be realistic or advisable for any of us to care for her in our homes, but it sounds like we'll have to wait at least a little to get a clearer sense of where on that spectrum she's likely to ultimately fall. Looks like I will be able to get down there for several days in late Feb./early March, and hopefully all my brothers at least will be able to come down for a few days also, so that we can get the outlines of a longterm plan mapped out and who's going to handle what, etc. delegated.

Thanks so much again for all the advice and support.

 

[MrBrau1]

Go see a lawyer who specializes in elder law.

http://www.naela.org/

 

[Angela Harlem]

 

[VintagePunk]

So sorry to hear of your mom's health issues and the difficulty that's facing you and your family, yolland. My thoughts are with all of you.

 

[Lila64]

 

[Carek1230]

 

[U2Girl416]

I'm days late in finding this thread and can't offer much to the great suggestions many have put forth. I do have experience with someone with a brain injury. Back in 2000, My stepfather fell down some stairs in a hotel when he and my mom were in PA one weekend. While my mom obviously did not disclose all the details to my 3 sisters and I, she said she knew there was something wrong because he was shaking on the ground. He fractured his skull and had bleeding in/on his brain. He was in a coma for some time. He spent months in intensive care at the hospital before he was well enough just to be transported back home to NY. From there he went to a rehab facility and learned how to speak again, how to move and get his basic skills back. He was combative toward the staff and even my mom. It really was very difficult to visit him at this place. he looked so different and he struggled to speak and all he wanted to do was go home with my mom. a few more months went by before he was able to come home. my mom cared for him every step of the way and for a long time he couldn't drive or be left home alone. my story does have a fairly happy ending though. years later, anyone who hadn't met him wouldn't know he suffered an injury. He still struggles sometimes to speak but he's completely with us again. still, he sometimes will say things that don't make sense or have some mood swings, and he's on medication that he has to take for the rest of his life. I'm not quite sure how my mom managed to put aside the thought of this is her husband suffering and went into full caregiver mode, but she did. I'm just thankful he's still around.

this thread reminds me that my parents are getting older. my stepdad is in his early 70s and my mom in her early 60s. I'm pretty sure prior to his accident though, that they had all their legal stuff in order. my mom has always encouraged my sisters and I to make sure that stuff is done, regardless if we are married, have kids...etc. I updated my will about a year ago and took care of power of attorney stuff too. scary but I feel better having something on the books and will update it again when I get married in a few months. Just last night one of my sisters called and asked if my fiance and I would be my niece's guardian if something happened to her and her husband. I definitely would suggest taking care of legal matters before stuff happens, if possible. and now with your mom, trying to sort stuff out now seems to be smart.

sorry to be so lengthy yolland, I don't mean to take away from the issue at hand. I don't have a lot of experience with the nursing home/care facility aspect of your situation. but I do know that when my grandparents were still alive, it took a bit for them to finally sell their house and agree to living in a "community". They had their own apt and if necessary they would be moved into a constant care unit that was attached to the building. it was somewhat comforting to know that care was available if they needed it. Neither of them ended up needing the constant care as it turned out.

I hope your mom's condition improves. so sorry you and your family is going through this

 

[Carek1230]

I was just cruising thru and wondering how things are going yolland?

 

[yolland]

Originally posted by U2Girl416

Thank you so much for sharing that. I've gotten very helpful advice about the legal aspects from several people now, and have talked to a couple people whose relatives had strokes or Alzheimer's who can certainly relate to some aspects of the situation, but you're the first person I've come across who actually had/has a brain-injured relative. It sounds like thus far at least, my mother has been more fortunate with the early stages of recovery than your stepfather was--the doctors told us that 85% of patients her age die immediately from injuries of this type, yet she was never in a coma, spent only a week in intensive care before discharge to a nearby rehab facility, and despite many obvious intellectual and emotional/'personality' deficits, remains in excellent physical shape otherwise...she can walk just fine and retains normal eye/hand motor skills, for example. But so much else of what you say is familiar--the difficulty in understanding others' speech or in making sense herself, the not being able to be left unattended for a minute because her grasp and judgment of her situation is so poor, and the painful-to-watch inability to understand the enormity of what's happened to her and why she can't just go home and get away from all these strangers who keep her tied up in restraints and try to make her do things she doesn't see why she needs to do. Fortunately, as of right now (knock wood...) she doesn't seem to have anything like the level of combativeness many brain-injured pople do; she does get toddler-like fits of peevishness sometimes because she just doesn't understand, but no real rage or radical mood swings, and according to my brother at least, most of the time she's alert and pleasant and even laughs a fair amount. Still, she just has very little ability to engage in "higher" thought processes requiring ability to synthesize multiple kinds of information, remains largely amnesiac (only inconsistently recognizes her own children, and when she does it's really just visual/name recall--no abiding sense of who they are as people or felt personal connection), and when she manages to undo her restraints--which she's proven unnervingly good at--she wanders off and does really strange things, like locking herself in utility closets or moving around furniture in visiting rooms or ducking behind unattended nurses' stations and pressing Code Blue buttons, flipping switches etc.

My brother has to fly back home to his family and his job tomorrow, though, so I won't be getting too many more detailed updates until I go down there myself for a week next month. As of right now, the longterm plan is that once she's stable enough to be transported halfway across the country (a couple months away yet at least), it would be to a skilled nursing facility near either myself or my younger brother. Unless she experiences dramatic (and, frankly, unexpected) improvements in her grasp and judgment of her social and material surroundings, though, I can't imagine us caring for her at home, especially since we both have spouses and young children. It's not so much the language deficits or the difficulties with basic self-care tasks etc.--it's the lack of judgment and the fact that she's probably going to have to be watched pretty much round-the-clock, lest she unpredictably do something bizarre that might endanger herself or possibly others.

Best of luck to your family with supporting your mother and stepfather as they get older.

 

[martha]

I'm sorry yolland. This sounds really tough.

 

[Carek1230]

Thanks for checking back in yolland and I am deeply sorry the prognosis isn't more positive although you did list some very good and positive points that your mother could be much worse off. I wish you and your family the best, I am glad to hear youare all pulling together to deal with this difficult situation. I am sure if your mother were able to process all that her children are doing for her she would let you know how very proud she is of you all. Keep doing what you are doing and occasionally let us know how things are going. Meanwhile if you need anyone to listen, etc. know that we are all here for you, sending positive energy and vibes your way. Take good care.