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Medical Forum / Diseases and Disorders / Alzheimer's / June 2005Warning: Caregiver rant!
You have all been very supportive of me as I learn how to cope with in early to mid stages of dementia mother and muddled in denial dad. I need to vent about him -- and this is a safe place, so here goes! The AD connection is that he is chief caretaker, and I just got an example of how quickly that could change. Monday morning he was all hot to get his suit to the cleanres by 8 am for same-day service. (Why? I don't know. As far as his calendar, the first date he would *possibly* need it is Sunday.) He is a diabetic and did not eat breakafst or take his meds before leaving the house. Diring his minivan, about a mile from the house he got dizzy, passed out, "drove" through a busy intersection, across three lanes of oncoming traffic, jumped the curve, hit a sign and then a towtruck. (FYI to the curious: No, his airbag did not deploy. Yes, the front end was pushed in two feet and the tow truck knocked out of commission -- that takes a hell of a hit!) Good Samaritan with medical experience stopped, asked his medical history, assumed it was low blood sugar and gave him cookies while ambulance on way. (Good guess.) He called my mom and said Dad was in a minor car accident, he was OK but his blood sugar was low, so they were taking him to the local hospital to be checked out. She called me, said she was sure he would be home soon, no need to come down. (I live 25 minutes away.) I replied, no we should go check on him, get dressed and eat *your* breakfast and I will be there. I then called ER nurse, who told me his heart was in irregular rhythm and he *would* be going into surgery for a pacemaker as soon as I signed the release. I then made a mistake. I called Mom (to make sure she was getting dressed, etc.) and I told her he had an irregular heartbeat and would need a pacemaker. She had one put in a year ago and after initail apprehension is very proud of it and how much better it has made her feel. I got to the house and she is in tears that he has a heart problem, afraid he might die. She had just finished compiling a scrapbook about his career and my brother from California was coming to visit and those were maybe both "signs" that he wouldn't make it. I pointed out that a pacemaker is not a difficult surgery, that she could always add mroe chapters to the book and that brother's arrival was good because she would have a man around the house to help Dad when he came home. When we got to hospital, his primary care physician and the cardiologist both told us that his heart had _stopped_, which was what caused the blacking out. It started itself again, possibly from the shock of the impact. The restarted rhythym was very irregular, with large gaps between beats and a pulse below 40. They had given him atropine, which got him into a better rhythm and pulse, but they did not know what would happen if they took him off that. So the pacemaker was an emergency and not really negotiable. He also cracked several ribs and maybe his left clavicle (collarbone), but they were afraid to give him much for pain with the heart in that condition. Fortunately the surgery went well and now two days later he has been discharged to home. Of course while he was in hospital I was taking care of Mom, making sure she ate (she is diabetic too), etc. etc. Seeing how much gentle prompting she needs to get through the day (and I'll bet you a dollar to a doughnut he is not doing it). Brother came in last night to stay at her place with her, and he'll be there tonight, leaving before dawn to fly back to California. So I am clearing my calendar to take care of both of them, knowing he can't drive for a while and has no car. I'm self-employed, and when I'm not working, there is no money! But these are the sacrifices we make ... and then the final straw As I was on my way back today I recalled that he was discharged without any pain meds for the ribs, so I called his MDs office to ask for an Rx -- he still has Darvocet in his system now, but by midnight those puppies are gonna hurt. They called back and said I needed to pick it up in less than half an hour when office closes -- since a narcotic, they cannot call it in. So I call the house to ask brother to go get it -- and Mom tells me brother and Dad are out ... wait for it ... CAR-SHOPPING!!!!!!! How do I get this man to understand he has to take care of himself for her sake if not for his???????? I'm moving checking out the local AL facility up the list because if he had died Monday (and either the heart attack or the wreck could have done it -- I don't know how he survived it without the airbag deploying) I would be looking for a placement now. I'm a little unnerved -- soothing noises from those who have been there would be appreciated!!! Songbird > You have all been very supportive of me as I learn how to cope with in > early [quoted text clipped - 104 lines] > > Songbird Dear Songbird, I just want to tell you that I really feel for you...... (((( songbird ))))))! The situation sounds really difficult, but I have always admired your ability to think on your feet and get things done, even when things are really frustrating. I know it isn't for me to say, but it sounds to me like your dad maybe ought not to be driving anymore considering the awful mess he got into. Does your brother realize how bad it really is? Did he get a ticket for his part in that accident? Hang in there .....  SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Evelyn, I had exactly the same thought. Question for Songbird. What did the police and insurance company have to say about this incident. I'd be gobsmacked if he wasn't charged, or at least asked to go for a medical evaluation for fitness to continue driving. What will this do to his insurance rates? He was not only at mortal risk, but he put others at serious risk - heart problem or no heart problem - due to his poor judgement with respect to his diabetes. What was your brother thinking to take your dad out car shopping at this point? Surely he must realize what a close call the situation was (i.e. dad killing self and taking others with him). Better to have a "time out" from driving, and get an all clear from the doc prior to even thinking about resuming. I think you are doing the right thing checking out potential placement locations for your mom. You have to have a good back up plan if your father should become ill or otherwise unable to look after her. I would guess from your description that his ability to look after her appropriately is marginal even now, and will get increasingly hairy as she deteriorates and can't be left alone even for a minute 24/7. Neither of you is going to be able to do it (you can't just stop working for the rest of her life)- so start shopping now, for options for adult daycare, respite care and permanent placement. When you are checking places out, make sure you think about the spectrum of AD i. e. don't shop for a place that will take her just the way she is now - make sure you think about the unthinkable - what about when she needs more than just assisted living, when she needs a locked protective ward, when she's incontinent etc. so you are ready for anything. Nothing worse than having a nice place in mind and then finding out that they won't take anyone who can't control their bowels, or is a wanderer, or can't walk - or whatever else these places sometimes use to exclude AD patients from eligibility. Hang in there. You are very lucky your mother can still use a phone - my MIL lost that ability even with preprogrammed speed dials with names pasted on the keys, by mid AD. I wish there was something we could do for you! What a harrowing few days you've been through. Mary G. Songbird, I can only imagine how upset and frustrated you must be. Does your brother understand the situation with your parents? You need him to back you up in making arrangements for them, and it really sounds as if that needs to be done fairly soon. You will be in my prayers, and they will be that they will be safe. Gwen > You have all been very supportive of me as I learn how to cope with in early > to mid stages of dementia mother and muddled in denial dad. I need to vent [quoted text clipped - 81 lines] > > Songbird Just a thought -- how soon does his doctor say he'll be able to drive? Is there any chance he might be willing to be the bad guy and break the news to him about limitations? He may be willing to listen to a voice of authority, at least for the standard 6 weeks after surgery. One other thought -- if this has been an ongoing problem that went critical and will get better after the pacemaker, that might be a hopeful note. IIRC, people experiencing arrhythmia can experience some fairly odd symptoms caused by sleep deprivation (similar to the mental fog and depression some experience with apnea). They don't wake up enough to actually _wake up_ but they can't get sufficient REM sleep.You may find his inability to deal with reality improved if he regains mental resilience by getting solid sleep. Karen > You have all been very supportive of me as I learn how to cope with in early > to mid stages of dementia mother and muddled in denial dad. I need to vent [quoted text clipped - 81 lines] > > Songbird Talked to brother last night -- managed not to say "What WERE you thinking?" Bro appreciates the gravity of the situation; his thinking was here was a chance to get Dad alone and talk to him man to man. He also was able to show Dad that yes, IF he were cleared by the doctor, the DMV AND the insurance company, he could afford a reasonable car. He got Dad to commit to letting Bro (who used to be a fleet manager for a national car rental company as well -- we both have checkered pasts that are coming in handy) negotiate the deal when the time comes. That means Bro can SLOW things down as much as possible. The accident report shows him at fault; after all, you could hardly blame the sign or the parked tow truck. But no ticket was issued. I haven't discussed it with the officer, but we're in a small Southern town and the elderly priest (in clerical collar) who is barely conscious may well have gotten a courtesy pass. I talked to his insurance agent last night, who has known him a decade or more. He says he doesn't think the insureance company will do any more than raise the rates, even with the health issues, his age (70 is not that old by his standards or mine), and the fact that this is the second vehicle he has totalled (and been at fault) in five years. (Now we know why the rest of us pay such sky-high premiums!!) He agrees with me that Dad does not need to rush back on the road and will counsel him so. The doctor said Monday that he would not be able to drive for a week since he could not raise his arm. I am thinking the ribs should add a little time to that -- he cannot move quickly to respond to a darting child, for example. Dad's mom was killed in front of him when he was 15 as she walked down the road and was hit by an inebriated truck driver; I would have hoped that would make him more attuned to the dangers, but I think the independent streak is kicking in. Bro left at 6:30 this morning to go back to the West Coast. (He already had a plane ticket and has to be at work tomorrow.) We agreed I need to work aggressively to find a placement alternative for Mom; he could see a real decline in a year. I am fortunate that he is on board with me (he's been known to call periodically and ask what I need him to be in favor of on his next phone call!). Dad seems to be recovering well and getting around OK. I'm trying to let him do as much as he can around the house, but I sat down with him and his calendar yesterday and cancelled things right and left for the next two weeks despite his "That's 10 days off, I'll be able to do that." "Dad, I've seen people recover from these things and it may well take a little longer than you thought. Let's not push it. People understand." Right now I am just tired. I was tired already from moving and was just to the point where the main physical labor was over and I thought I could start recovering my rest. That was Sunday night. Oh well. Thanks for the encouragement. Songbird Sure is good that you and your brother are on the same page. That should make it easier no matter what happens. Thank God for that. Gwen > Talked to brother last night -- managed not to say "What WERE you thinking?" > Bro appreciates the gravity of the situation; his thinking was here was a [quoted text clipped - 49 lines] > > Songbird > Talked to brother last night -- managed not to say "What WERE you > thinking?" Bro appreciates the gravity of the situation; his thinking was [quoted text clipped - 49 lines] > > Songbird It is great that your brother understands what is going on. When you hear of so many that are at opposites, it is good to hear of a family that can cooperate in these matters. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > The accident report shows him at fault; after all, you could hardly blame > the sign or the parked tow truck. But no ticket was issued. I haven't > discussed it with the officer, but we're in a small Southern town and the > elderly priest (in clerical collar) who is barely conscious may well have > gotten a courtesy pass. Time to have a little talk with the officer, and if you get no satisfaction, with his chief. They and his doctor need to ensure that he simply does not drive again. Period. Tell your father's doc what I told my mother's: "Think about whether you want to see him coming down the road toward you in the other lane." Songbird,I hope you won't get mad/upset for me saying this;but I have just finished reading this thread and the problems you had last week and I must admit that yours put my much smaller ones in perspective and in that way helped me. Calmed me down so that I'm not so fussy about somethings that went on here last week.:-) And when that happens I am less tense and stressed feeling. I just hate that such comes by your having such a hard time lately with your Dad and Mom. :-( Ronny, you are a good son. Gwen > Songbird,I hope you won't get mad/upset for me saying this;but I have > just finished reading this thread and the problems you had last week and [quoted text clipped - 3 lines] > less tense and stressed feeling. I just hate that such comes by your > having such a hard time lately with your Dad and Mom. :-( Thank you Gwen! :-) No, Ronny, it doesn't upset me. I have had the same feeling from reading others' posts at times. In the same way, those posts have helped prepare me for what was to come, to make me think "how will I handle that when my turn comes?" So I think venting helps not only the venters but the listeners as well! Songbird > Songbird,I hope you won't get mad/upset for me saying this;but I have > just finished reading this thread and the problems you had last week and [quoted text clipped - 3 lines] > less tense and stressed feeling. I just hate that such comes by your > having such a hard time lately with your Dad and Mom. :-( Talked to brother last night -- managed not to say "What WERE you thinking?" Bro appreciates the gravity of the situation; his thinking was here was a chance to get Dad alone and talk to him man to man. He also was able to show Dad that yes, IF he were cleared by the doctor, the DMV AND the insurance company, he could afford a reasonable car. He got Dad to commit to letting Bro (who used to be a fleet manager for a national car rental company as well -- we both have checkered pasts that are coming in handy) negotiate the deal when the time comes. That means Bro can SLOW things down as much as possible. The accident report shows him at fault; after all, you could hardly blame the sign or the parked tow truck. But no ticket was issued. I haven't discussed it with the officer, but we're in a small Southern town and the elderly priest (in clerical collar) who is barely conscious may well have gotten a courtesy pass. I talked to his insurance agent last night, who has known him a decade or more. He says he doesn't think the insureance company will do any more than raise the rates, even with the health issues, his age (70 is not that old by his standards or mine), and the fact that this is the second vehicle he has totalled (and been at fault) in five years. (Now we know why the rest of us pay such sky-high premiums!!) He agrees with me that Dad does not need to rush back on the road and will counsel him so. The doctor said Monday that he would not be able to drive for a week since he could not raise his arm. I am thinking the ribs should add a little time to that -- he cannot move quickly to respond to a darting child, for example. Dad's mom was killed in front of him when he was 15 as she walked down the road and was hit by an inebriated truck driver; I would have hoped that would make him more attuned to the dangers, but I think the independent streak is kicking in. Bro left at 6:30 this morning to go back to the West Coast. (He already had a plane ticket and has to be at work tomorrow.) We agreed I need to work aggressively to find a placement alternative for Mom; he could see a real decline in a year. I am fortunate that he is on board with me (he's been known to call periodically and ask what I need him to be in favor of on his next phone call!). Dad seems to be recovering well and getting around OK. I'm trying to let him do as much as he can around the house, but I sat down with him and his calendar yesterday and cancelled things right and left for the next two weeks despite his "That's 10 days off, I'll be able to do that." "Dad, I've seen people recover from these things and it may well take a little longer than you thought. Let's not push it. People understand." Right now I am just tired. I was tired already from moving and was just to the point where the main physical labor was over and I thought I could start recovering my rest. That was Sunday night. Oh well. Thanks for the encouragement. Songbird I'm new here so forgive me if I state the obvious or previously covered. Do you have Durable Power of Attorney? It might be a good time to broach the subject in view of his inability to function after the accident and might ease placement of your Mom 'just in case'. Be sure all phases of responsibility are covered in the DPOA. Otherwise it sounds like you've done very well under the circumstances. Me, I've BTDT. Good points, Bud. I have DPOA (already registered with county clerk of court), HCPOA, signatory power on the checking acount and access to safe deposit box and am executrix for both of them. I have HIPAA releases from both so I can talk to docs and insurance companies. I had a set of keys to everything but the car -- and I guess that one no longer matters.They have living wills and last wills. I have tried to cover all the bases. (I have a "worst case scenario" mindset on these things!) Anything else I could use -- please let me know! Songbird > I'm new here so forgive me if I state the obvious or previously covered. > Do you have Durable Power of Attorney? It might be a good time to broach > the subject in view of his inability to function after the accident and > might ease placement of your Mom 'just in case'. Be sure all phases of > responsibility are covered in the DPOA. Otherwise it sounds like you've > done very well under the circumstances. Me, I've BTDT. Songbird <song2871@yahoo.com> is alleged to have said: > Good points, Bud. I have DPOA (already registered with county clerk of > court), HCPOA, signatory power on the checking acount and access to safe [quoted text clipped - 5 lines] > I have tried to cover all the bases. (I have a "worst case scenario" mindset > on these things!) Anything else I could use -- please let me know! I'm not sure. POA's tend to only kick in if the person they're for is incompetent or ill, right? What I'm getting at is, where are you if you think you need to put Mom in a home, but Dad says "She's ok here at home." Who prevails? It would be too bad if you had to go to court to get a conservatorship over Mom. It does sound as though your Dad would not do to well on his own if Mom did go into a facility. In some ways, it would be easier if they both went into assisted living together. Is that likely? SignatureJo Ann Malina, make spamthis best to find my address Growing old -- it's not nice, but it's interesting. -- August Strindberg > I'm not sure. POA's tend to only kick in if the person they're for > is incompetent or ill, right? Not necessarily. They can be cancelled by those giving the permission and then it would be necessary to take the next legal step of getting guardianship. > I'm not sure. POA's tend to only kick in if the person they're for > is incompetent or ill, right? What I'm getting at is, where are you > if you think you need to put Mom in a home, but Dad says "She's ok > here at home." Who prevails? It would be too bad if you had to go > to court to get a conservatorship over Mom. I have a durable POA that does not require them to be incompetent, rather than a "springing" POA that "springs" into action when someone is incompetent as some states provide for. For example, I signed all the papers at a real estate closing for them last year because it was inconvenient for them to be there logistics-wise (Mom was recovering from HER pacemaker). When they signed the POAs, we had a discussion on this, and it was decided to make me the primary decision-maker for both of them. (The attorney explained to Mom that this meant I, not Dad, would be making the decisions for her, in front of both of them. I waited for him to balk at this at the latest minute (held breath), but he told the attorney he trusted me and I understood the medical stuff better than he did.) Part of our thinking was that if Dad were Mom's POA but he became incompetent, I would have to prove him incompetent to assume his POA for her. Dad has a horror of getting the courts involved (by-product of a brief stint in foster care as a child) so he agreed to remove that possibility. At this point it is 50/50 whether Mom would be considered competent enough to revoke the POA or change the designee. So technically, I could admit Mom to an AL without Dad's consent. She's not ready for that yet IF he is willing to do for her. The problem at this point is getting him to realize he needs to tell her go take a bath, eat your breakfast, we ARE going for a walk, etc. She will do 98 percent of what he tells her -- she fights him on the exercise because she is afraid she will get lost. She doesn't trust him to stay with her and rightfully so. (That was the six months ago rant that you missed <lol>). > It does sound as though your Dad would not do to well on his own if > Mom did go into a facility. In some ways, it would be easier if they > both went into assisted living together. Is that likely? It's questionable at this point if Mom would even be accepted to AL. She can bathe, toilet, dress and feed herself -- she just forgets to do it. She is much better about taking her meds than any of that, actually. I would probably have to find an independent living place for her (provides meals, transport) and have a home care worker (or me!) make sure she bathes, do the housekeeping, that sort of thing. The only thing questionable on Dad is whether he can drive after this. He has just accepted a full-time (though limited contract) job as a minister. (Which I was and remain opposed to, but the POA doesn't let me *quit* for him <G>. Even if it did, he could re-accept it. The POA does not strip him of right to make his own decisions until he is considered incompetent medically. So to admit Mom, if she were opposed, I would have to get her declared incompetent by probate court, but Dad has no standing to object to my decisions on her behalf.) When the day comes, they will need to go into a progressive care home, so he can be in one end and she in the other. They looked at this a few years ago and I was the one who talked them out of it. The entrance fee would have stripped all their assets and they could have both afforded to live there as long as they were both independent. Once she needed AL, they would not have enough $ and would be dependent on the benevolent fund. The church home's propaganda said they had never asked anyone to leave for financial reasons, but there was no guarantee they wouldn't in the future. Plus, it said they could ask you to leave for medical reasons. They had no Alz ward, but said they cared for Alz patients on the nursing wing. So here was my worse case scenario -- she turns into the Alz patient from hell, wandering, cursing, abusive (which is so hard to imagine my gentle Charleston lady mom doing, but the disease is another matter), they say they can't handle her and ask her to leave -- there is no money for her to go anywhere but whatever Medicaid spot I can find her. That was when I convinced them to move closer to me so we could keep Mom at home as long as possible and hopefully save some more money towards her care. (They live below their means now.) A great resource that helped me sort through that scenario was www.aplaceformom.com . They have trained nurses and social workers who will talk to you about all the options. It is free to you; just if you agree she needs AL, nursing care, etc., they will provide you with the contacts of their sponsors. No obligation to actually go there, though. My social worker was wonderful -- even called back after she knew I was going to tackle the subject with parents just to see how I was. And she was the first one to agree they did not need a placement at that time, rather than a hard sales approach for her sponsors. I guess what Monday showed me was that on any day I might be having to find her a placement if something were to happen to Dad. So I am now investigating those options. Songbird Dear Songbird, Hi... (excuse the top posting) but have you considered having a visiting nurse come once or twice a week to help your mom bathe? I have heard of situations where that worked out well, and it would serve in several ways. It'd give you a little break, it'd be someone who is a good observer/witness to the situation, and your dad might listen to their recommendations regarding your mom's needs more readily as an outside professional? You know your mom sounds just about where Ida was when she first came here. She could do all those things with just a little prompting, but she couldn't manage to think of them herself, all alone. Only part she resisted (initially) was the bath thing, but we did get past that when I began assisting her and telling her when it was time to bathe. I probably asked this before, so forgive me if I have forgotten, but is daycare an option in your area? It was such a lifesaver for us and for Ida, I have no idea how we would have managed without it. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >> I'm not sure. POA's tend to only kick in if the person they're for >> is incompetent or ill, right? What I'm getting at is, where are you [quoted text clipped - 84 lines] > > Songbird > Dear Songbird, > > Hi... (excuse the top posting) but have you considered having a visiting > nurse come once or twice a week to help your mom bathe? I have heard of > situations where that worked out well, and it would serve in several ways. Yes, and I suggested it to Dad -- he doesn't seem to think she has a problem. This is somehtring I need to check for a clearere understanding on how she is doing in her own environment. She stayed with me for 24 hours and never touched a towel or washcloth (even to wash hands or face), but that may have been due to unfamiliar environment. .> > It'd give you a little break, it'd be someone who is a good > observer/witness to the situation, and your dad might listen to their > recommendations regarding your mom's needs more readily as an outside > professional? I'm wondering if there is someone I can get to do an assessment of how she is functioning, perhaps "ordered" by doctor. It might help to have an objective assessment for both of us. I must admit I sometimes wonder if I am being an alarmist. > You know your mom sounds just about where Ida was when she first came > here. She could do all those things with just a little prompting, but she [quoted text clipped - 5 lines] > daycare an option in your area? It was such a lifesaver for us and for > Ida, I have no idea how we would have managed without it. The only daycare program I am aware of in the area is a very good one, but most of its participants are much more advanced. Most have mobility problems or are incontinent. Some are nonverbal. I think she'd be better served if we create our own "day care." If Dad is insisting on leaving her alone 30 hours a week to take on this job, then we need to enlist friends, volunteers, even paid aides to take her to an exercise class, to go shopping, to go to the library (she might actually enjoy going to Storytime to see the children). She can and has been doing some volunteer work at the church office, folding bulletins, stuffing envelopes, entertaining small children who come in with their parents. It's just this doesn't occur to Dad. He assumes she will entertain herself, as she always has, but the problem is more one of supervision than activity. Songbird >>> I'm not sure. POA's tend to only kick in if the person they're for >>> is incompetent or ill, right? What I'm getting at is, where are you [quoted text clipped - 84 lines] >> >> Songbird Dear Songbird, >> have you considered having a visiting nurse come once or twice a week to >> help your mom bathe? > Yes, and I suggested it to Dad -- he doesn't seem to think she has a > problem. This is somehtring I need to check for a clearere understanding > on how she is doing in her own environment. She stayed with me for 24 > hours and never touched a towel or washcloth (even to wash hands or face), > but that may have been due to unfamiliar environment. As time goes on the environment becomes even more unfamiliar. Someone here once said something that stuck in my mind.... at a certain point "the only thing still familiar becomes ones own dirty clothing." This was to explain why they hated to change and to bathe. I wouldn't call it normal at all not to touch a towel or anything for 24 hours, so she may be possibly neglecting regular bathing. I know Ida was always a very clean woman, but as time progressed we noticed she had b.o. when hugging her hello or goodbye, and it amazed us. That got worse and worse. By the time we took her to live with us there was an inch of dust in the bottom of her tub, and it had become a closet or sorts for all kinds of stuff that didn't belong in it. But when I asked her, she told me she had a bath "yesterday".... our noses and the tub revealed the true tale, and it was a way longer than that :-( > I'm wondering if there is someone I can get to do an assessment of how she > is functioning, perhaps "ordered" by doctor. It might help to have an > objective assessment for both of us. I must admit I sometimes wonder if I > am being an alarmist. Not at all. You are a realist. I was the only one who realized that something was terribly wrong with Ida. Nobody else figured it out. Tests revealed it was a lot worse than anyone knew. Periodic re-testing might be a bit stressful for all concerned, but if there is still a doubt in anyones mind you might want to ask about having it done at least once to be sure. It was a psychiatrist who gave the test that showed us exactly where Ida's illness was 'at,' and it was recommended that she couldn't be alone anymore. There was actually a whole battery of tests to rule out other possible causes of dementia, but the psychiatric test showed her real state. >> is daycare an option in your area? It was such a lifesaver for us and >> for Ida, I have no idea how we would have managed without it. > The only daycare program I am aware of in the area is a very good one, but > most of its participants are much more advanced. Most have mobility [quoted text clipped - 8 lines] > doesn't occur to Dad. He assumes she will entertain herself, as she always > has, but the problem is more one of supervision than activity. That all sounds excellent. About the daycare scenario; Yes, there often are people there who are in a lot worse shape. Ida was still continent, still able to dress herself, put on a bit of lipstick, comb her hair nicely, and pick out the matching jewelry for her outfit when we started her at daycare. She complained to us about how there were such "crazy" people there. But the staff knew exactly what to do with people of EVERY stage of the illness including those with only minimal problems in early stages. Let me see......I can list some the stuff they did for you. Ida was kept busy helping with folding laundry, wiping down the tables, coloring pictures and doing crafts, stringing beads, scrapbooking, gluing decorations onto old notebooks to make photo albums. They took lots of photos. They had entertainment occasionally. Young musicians would sometimes come and play for them. It was good for the old folks and helped the young ones get confident in front of an audience. They played bingo. They had a kindergarten class come to visit with the old folks. A wood carver came, did a demonstration, and made a little carving which he gave to Ida. They had birthday parties for each and every patient. They made a big fuss over each and every holiday. The daycare clients worked for weeks making holiday decorations of every kind, even minor ones. Since most of their clients were memory impaired they left the decorations up till the next holiday was near. They had picnics in the park and in the daycare center yard. They went for a boatride on the Hudson River. They went to a diner and had a group lunch. They had visiting therapy dogs come to be petted. They had a big open house party with the families of their clients. That is just a small list of some of the stuff they did. They kept the people busy all the time, and there was always some event going on. Naturally the more reclusive or more impaired ones would just sit on the recliners or sofas in the adjoining room and snooze in front of the TV. Ida eventually did that too. But they had enough amusements and activities that the less impaired managed quite well. I have to tell you the truth though, Ida kept asking to "go home" all the time, constantly. Later on she did stop that somewhat, but it was because she was too impaired to deal with the concept anymore. You ought to call your local daycare center and ask them about their activities and what they do to amuse people who aren't in later stages. One woman here convinced her (formerly active professional) mom that she was needed at the daycare center as a volunteer. It worked. So even if your mom isn't quite ready just yet, it may be an option to consider sometime soon. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > I'm not sure. POA's tend to only kick in if the person they're for > is incompetent or ill, right? What I'm getting at is, where are you > if you think you need to put Mom in a home, but Dad says "She's ok > here at home." Who prevails? It would be too bad if you had to go > to court to get a conservatorship over Mom. I have a durable POA that does not require them to be incompetent, rather than a "springing" POA that "springs" into action when someone is incompetent as some states provide for. For example, I signed all the papers at a real estate closing for them last year because it was inconvenient for them to be there logistics-wise (Mom was recovering from HER pacemaker). When they signed the POAs, we had a discussion on this, and it was decided to make me the primary decision-maker for both of them. (The attorney explained to Mom that this meant I, not Dad, would be making the decisions for her, in front of both of them. I waited for him to balk at this at the latest minute (held breath), but he told the attorney he trusted me and I understood the medical stuff better than he did.) Part of our thinking was that if Dad were Mom's POA but he became incompetent, I would have to prove him incompetent to assume his POA for her. Dad has a horror of getting the courts involved (by-product of a brief stint in foster care as a child) so he agreed to remove that possibility. At this point it is 50/50 whether Mom would be considered competent enough to revoke the POA or change the designee. So technically, I could admit Mom to an AL without Dad's consent. She's not ready for that yet IF he is willing to do for her. The problem at this point is getting him to realize he needs to tell her go take a bath, eat your breakfast, we ARE going for a walk, etc. She will do 98 percent of what he tells her -- she fights him on the exercise because she is afraid she will get lost. She doesn't trust him to stay with her and rightfully so. (That was the six months ago rant that you missed <lol>). > It does sound as though your Dad would not do to well on his own if > Mom did go into a facility. In some ways, it would be easier if they > both went into assisted living together. Is that likely? It's questionable at this point if Mom would even be accepted to AL. She can bathe, toilet, dress and feed herself -- she just forgets to do it. She is much better about taking her meds than any of that, actually. I would probably have to find an independent living place for her (provides meals, transport) and have a home care worker (or me!) make sure she bathes, do the housekeeping, that sort of thing. The only thing questionable on Dad is whether he can drive after this. He has just accepted a full-time (though limited contract) job as a minister. (Which I was and remain opposed to, but the POA doesn't let me *quit* for him <G>. Even if it did, he could re-accept it. The POA does not strip him of right to make his own decisions until he is considered incompetent medically. So to admit Mom, if she were opposed, I would have to get her declared incompetent by probate court, but Dad has no standing to object to my decisions on her behalf.) When the day comes, they will need to go into a progressive care home, so he can be in one end and she in the other. They looked at this a few years ago and I was the one who talked them out of it. The entrance fee would have stripped all their assets and they could have both afforded to live there as long as they were both independent. Once she needed AL, they would not have enough $ and would be dependent on the benevolent fund. The church home's propaganda said they had never asked anyone to leave for financial reasons, but there was no guarantee they wouldn't in the future. Plus, it said they could ask you to leave for medical reasons. They had no Alz ward, but said they cared for Alz patients on the nursing wing. So here was my worse case scenario -- she turns into the Alz patient from hell, wandering, cursing, abusive (which is so hard to imagine my gentle Charleston lady mom doing, but the disease is another matter), they say they can't handle her and ask her to leave -- there is no money for her to go anywhere but whatever Medicaid spot I can find her. That was when I convinced them to move closer to me so we could keep Mom at home as long as possible and hopefully save some more money towards her care. (They live below their means now.) A great resource that helped me sort through that scenario was www.aplaceformom.com . They have trained nurses and social workers who will talk to you about all the options. It is free to you; just if you agree she needs AL, nursing care, etc., they will provide you with the contacts of their sponsors. No obligation to actually go there, though. My social worker was wonderful -- even called back after she knew I was going to tackle the subject with parents just to see how I was. And she was the first one to agree they did not need a placement at that time, rather than a hard sales approach for her sponsors. I guess what Monday showed me was that on any day I might be having to find her a placement if something were to happen to Dad. So I am now investigating those options. Songbird > I have tried to cover all the bases. (I have a "worst case scenario" mindset > on these things!) Anything else I could use -- please let me know! Proper mindset and good thinking all around, I'd say. Have nothing to suggest at this time except a deep well of patience and fortitude. LOL! |
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