Parents caring for the parent support thread (Part 1)

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1101

<p>preironic … GREAT for you that level 2 LTC kicked in. I am still fighting Mom’s and she just upped to level 3.
One thing I noted about my mom just now (after a week of living with her and sleeping on her floor to keep her from running off… long story I’ll get to later). What I noted is that when Mom can’t remember what she did, she says “Nothing”. then you will find out she went to the tea or xx or yy or zzz. On the day after she had 6 teeth extracted and was supposed to be on bed rest … she cleaned up the kitchen, changed clothes twice, went for her one long post op check and denture fitting, came home and visited with DAR friends for an hour, then went to listen to the piano music and have tea. Unfortunately, when I got back just then, she was sitting on a bench, not knowing where she was or how to get to her room. When I tried to tell her she did too much (the next day) She exclaimed STRONGLY well, I didn’t DO ANYTHING all day! yeah, right. </p>

<p>I feel like I am spying on Mom asking the nurses what she does so I can queue her and remind her. She is a social being, so much happier here where she has people around. Problem/down side is that she works so hard to impress them that she looks/sounds even loopier. However, I have noticed that the people that are there for just a little care, food or driving, DO form friendships (or cliques) and do watch out for each other.</p>

<p>I just spent a week up there because Mom didn’t sleep for three days and got more and more wound up, just like a 2 year old when they get too tired they just can;t stop. I needed to take her for a car ride LOCKED in a baby seat. I am so very tired. And after that week I came home. My H is not a fan (to say the least) of her, the one thing we fought about for 40 years (so far) is my Mom and how much time she takes. He has been great with the amount of support and helping me straighten out the mess. But I can’t be away from home/him much more. And she lives 400 miles away. She still has friends in town that so visit her, although they are getting not to go as often as she begins to talk about my grandma (who died in 1985) being ready to have Mom take her for a drive in her car… never mind Mom also lost her driver’s license because she didn’t know how to anymore.</p>

<p>I guess I hope the drugs work.</p>

1102

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<p>You’re not spying. Well, you are, but with her best interests at heart. I’ve found it important and helpful to have open lines of communication – both ways – with the AL staff. They see things that I never will, and I know things about my parents that the staff can use to make the parents’ life better. Going with the aging-parents-as-two-year-olds meme, you’d never feel guilty about discussing your toddler with their daycare provider. For some of these elderly parents, it’s kind of the same thing.</p>

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<p>My mother and her next-door neighbor are best of buddies, but it took a couple of months for them to find each other. Give it some time. This is a big change for your mom and it’ll take a little while for her to get comfortable.</p>

1103

<p>Oh boy. This is just the thread I need.</p>

<p>Short version - mom came up to visit for Easter - staying at my sister’s. She was hospitalized with dehydration, diagnosed with dementia, family told by multiple docs (ER, Neuro, social worker, and more) that she should no longer live alone and must be in assisted living. We’ve been worried about her for a long time, but she has stubbornly stayed in her house (of 40 years), alone, 4 hours from family. Add to the mix that she is a hoarder, had 3 strokes in the past (but only lasting issue was disorganization), and has been extremely gullible for much of her life. (Also, she couldn’t tell the doctors what year it is, what her last name is, her 4 kids’ names, who the president is, etc. She is “well” now and thinks it is 2015 and still can’t remember all of our names.)</p>

<p>We have decided that she will move in with me, so we’ve been getting a first floor room ready for her. Meanwhile, she’s also been diagnosed with a bladder infection and given estrogen cream (?). Today she refused to take her prescriptions, saying they would kill her because she read the warning lists. </p>

<p>She has ordered everything imaginable from companies that sell books, book series, note cards, calendars, etc. She gets 10 plus pieces of sweepstakes mail per day. I am already dreading her moving in and wanting to see her “mail” every day.</p>

<p>I have read back a little, but want to read everything. I never gave much thought to needing to take care of an ill parent while working full time and being the emotional shoulder for 2 college kids and a high schooler. This is already hard and it’s barely started.</p>

<p>I apologize if this has been answered before, but how do you go about telling companies to stop sending “preview” books, or things in a series, when your parent is incapable of making an informed decision about buying such things? Is there some kind of cease and desist form letter that will help get removed from the mailing list?</p>

<p>My mom had POAs for Medical and Property drawn up 16 years ago, but I’m not sure in what capacity I can really use those. I don’t think she should be handling her finances any longer but don’t know that I can really force that issue unless I go to court to become her guardian. </p>

<p>Thanks for listening. I’ll go back and see if I can catch up.</p>

1104

<p>psychmomma, welcome to the thread. </p>

<p>Regarding the junk mail:</p>

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<p>[url=<a href=“http://ago.mo.gov/publications/sweepstakes.htm]Sweepstakes[/url”>http://ago.mo.gov/publications/sweepstakes.htm]Sweepstakes[/url</a>]</p>

<p>Are you still working full time? The reason I ask is that it seems like she could be a danger to herself if she’s home alone all day. She sounds like a handful.</p>

1105

<p>RobD- exactly! My mother is so resistant to any new things. Yet she also mentions she does not get many calls or hear from people, yet she will not call people, rarely writes anyone and I am pushing her, against her will, to try email.</p>

<p>One time my sister took her to a social event with the in laws, my mother sat with the grandmother visiting for the entire time. When the story was related to me, she said that the other woman never stopped talking, I said something to the effect she has nothing else to do, so it must have been fun to talk to someone else instead of watching TV. She replied, “at least I can turn off the TV when I am tired of it”</p>

<p>I feel badly that she is bored, but I am frustrated by her unwillingness to do anything we suggest. There is a reason for each activity to be quashed, but she is in good shape physically and mentally and could use the company of other people her age, just someone to show photos of the grandkids!</p>

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<p>LasMa, I do work full-time but my H works out of our house. I don’t think he knows what he’s in for keeping an eye on her all day. She does sleep late, piddle around making oatmeal, read, watch tv, etc., so I’m hoping she can be ok until I get home and can get her to go for a walk or to the store or help with dinner. I plan on giving her some small jobs like folding laundry, etc. so she feels like she’s helping out. (I know this is a big thing for her and many older folks.)
Thanks for the Sweepstakes info. I can only imagine how many companies need to receive that letter.</p>

1107

<p>Psychmomma regarding junk mail: you can request the post office not to forward any junk mail to her address. I recommend ( in case you have not done so) you to have power of attorney over her affairs so you’ll be allowed to change things in her behalf. People with dementia have to have someone look after their interests. My father would lose money like crazy. I stop giving him money. I paid all the bills, bought all the food , removed credit cards, etc. now he lives with me and things are easier to control. You are going through a tough phase, were they are still active enough to being able to do normal everyday stuff but do it erratically or carelessly and are difficult to control or convince. I’ve been there. It is very hard, I know. I also have kids, and I am an only child, so I do not have anyone to share this responsibilities with. Good luck.</p>

1108

<p>I have found great comfort from those posting on this thread. It can be a nuisance to try to stop the junk mail and mail from companies that a person ordered from in the past. Some companies stopped the mail and orders. When others did not, after much time and effort was put into proper notification, I finally wrote deceased, return to sender on the mail or package. (I know, I am going to go straight to H***). Check to see if the POA documents are drawn up in a state that has no expiration on them. Even in CT, I run into problems with certain banks that do not recognize the POA because it is greater than 6mos. old. One bank insisted that I get their own POA on file, it was easier than hiring my attorney to fight it. Is your name listed as POA on all financial, medical and insurance records? My aunt agreed to also put my name on her accounts as joint ownership. When she passes, I will still be able to continue to pay bills as POA terminates at the time of death. Does your mom have a will and are you the executor? Does she have a medical directive drawn up listing her wishes regarding end of life, DNR, and are you listed as her health proxy. I carry the POA and health directive to every MD visit and bank, have them make copies for their records, also have the pharmacy or mail order pharmacy notified and send them the documents they will need as well as any insurance company, etc. Is there a local agency that will pick up your mom for a couple of hours a week for supervised activities? It is a HUGE responsibility and strain on a family to care for a loved one with these needs in your home. The one thing that I learned here, be kind to yourself. Your intentions are wonderful, but realize it will be exhausting for you as you work full time and have a husband and children to care for. Thoughts and prayers for you and all my fellow CC’s.</p>

1109

<p>ECmotherx2 have does add very good points. If she receives help from the government (supplemental income for instance) you can have it transferred to your name if you fill out the appropriate paperwork. Very important point about taking the paperwork at any doctors visit and emergency room visit because if you are not the person designated to take decisions for her it can be a nightmare dealing with doctors. It is always wise to be informed of the laws of your state. I live in FL so I cannot advise but it is worth paying an attorney or a paralegal for a few hours of their time. It will answer and avoid a lot of problems in the long run. In Florida we also have Adult Day Care facilities for people that work and cannot leave their parents alone at home. Some even pick them up and bring them back later during the day. Also there are places specialized in dementia patients that offer occupational therapy for patients that are still able to do things for themselves.</p>

1110

<p>Esobay - are the drugs for you or her? I recommend both.</p>

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<p>preironic, LOL. Drugs for her, whisky for me (not really, I didn’t dare drink while up there. My stomach hurt so I could barely eat. I survived on Advil for the headaches). Now I am home the 5 o’clock glass of wine time gets moved up and goes on later…</p>

<p>Mom’s drug was seroquel. The 25mg dose did nothing. the bump to 50 seems to be working a bit. She is calmer today about losing her purse (again… she hides it and forgets where she put it). Last week she would have been raging that the aids stole it and trying to call the police. Today she said she’d look again after I told her the three places we found it before. </p>

<p>I know seroquel use is controversial and doesn’t work in all cases. It has some dangerous side effects, but in her case, if it works to help her be calmer, I really think the risks are worth it.</p>

<p>psychmomma… I don’t know how anyone can survive having a relative like my mom (yours might be better, but sounds similar) in their home. There would be no respite. Mom sucks every minute of time and energy out of me when I am there. Coming home to deal with taxes comes as a relief!!<br>
I tried to get by with Mom’s POA and it did work for lots of things. Problem is that there are some unscrupulous people around that could get her to cancel the POA. So I just (after six months) have gotten around to getting the conservatorship and guardianship. The POA doesn’t, for example, keep her in the AL place. She <em>could</em> call a cab if she wanted to. The staff tries to stop her (and did!) but she <em>could</em> get out. When I have the guardianship, no she can’t get out and no she can’t overturn the POA.</p>

<p>I made up a postcard saying REMOVE FROM ALL MAILINGS and tore off the labels from magazines, books and that stuff and then faxed them together to every place that had a label. It has gone down significantly. I also had to get the credit card companies from sending the solicitations. She <em>did</em> surprise me in that she tore up the “checks” that came with one of her credit cards… we also stopped having anyone give her her mail, it was causing more grief than good. I have temporarily been paying her accountant to look at the forwarded mail and fax me any bills. a Forward will only work for 6 months so I hope I have it all changed by the time it expires. </p>

<p>People keep giving me great advice, but I have to move at my own pace. I probably should have gone for the guardianship 5 months ago, but she seemed sort of compliant. What I didn’t really accept is that it is a progressive disease and things will change with her mental state constantly. So compliant last month… angry this month … yeah, I should have moved on the legal stuff before the anger. But I don’t beat myself up about it, I really am picking up and letting go as fast as I can. DH especially would like it to move faster, lock her up and throw away the key and go to Hawaii without any worries over her. (well, he has no idea how daughters entangle with their moms in my case. His parents are dead, died young and he also never saw his parents care for their aging parents. I saw my mom live with my grandma and her Alzheimers for years. It wasn’t pretty, but Mom really didn’t complain, even when she changed Grandma’s diaper.)<br>
And that is a reminder that maybe pyschmom, that you should look into a professional place… your DH should not be contemplating that. And with your kids, IMHO neither should you. And it might happen so so so much quicker than you think.</p>

<p>Good luck to all on this journey.</p>

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<p>Of all the true words on this thread, these are some of the truest. I was on my last nerve and ended up in the ER for stress-induced gastritis (I thought it was an ulcer), before I finally learned my lesson. My DH, my brother, and the ER doc all had to tell me before I got it through my head and set some boundaries with my parents. And my parents don’t even live with me! </p>

<p>psychmomma and anyone else who has live-in parents, it’s essential that you draw some lines in the sand about what you can and cannot do, and that you carve out some regular time for yourself away from them. As hard as it is and despite the guilt it may produce, you simply have no choice, because eso is right, they really will suck you dry if you don’t.</p>

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<p>^^^ and we are entitled a break sometimes and our own happiness. Also, we have other family members that deserve our attention and non-stressed self.<br>
Some situations are so hard. When my dad was at his worst, we all struggled with balance between doing what was best for him and what was sustainable/reasonable for us. H and I decided long ago that we would not have a parent move in with us if possible(we both work, and in all honesty, his mother would suck the life out of all of us). In some ways, this line in the sand has helped because it limits what our care options are. One parent is gone after a long, debilitating illness, two are in the beginning/middle stages of what I fear will be long and difficult medical situations, and the fourth is still happy and fit and taking good care of herself (but that could change). Hugs to all.</p>

1114

<p>My mother is “friends” with the recreation staff and aides…a bit with the residents. Unfortunately, there are not that many 90 yr olds who are interested in current events and things she likes…too many are out of it. BUT if they try, they can make friends. Its an effort, if they are not naturally social</p>

<p>OH - preironic and esobay…there is NO WAY i could live with my mother, now the point is moot as she needs too much care, but in the best of times, it would be impossible. She is difficult, to say the least . It sounds like both of you are handling very hard situations well.</p>

<p>My mother is MUCH nicer to the staff at her care facility than she is to family, too… My dad who had Alzheimers was easier.</p>

1115

<p>Hmm, if only we could all get our 90ish parents, who are still with it mentally, to talk to each other. You are right, san-dee, when you are approaching 90, a huge portion pf people who would be your age are dead, and the remaining ones often have physical and/or mental issues.</p>

1116

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<p>VERY true, the above. Always was. So that she is sometimes better with them than with me for that reason as well. </p>

<p>Trying to remember H deserves a non-stressed self as we squabble over taxes. Somehow I don’t think it is actually taxes …</p>

1117

<p>My father is 92. I know how hard it could get. He used to live on his own ( with daily help) but at night he would call my house 2 to 3 times in the middle of the night to say “Good Morning”. It got really bad. I disconnect the phone one end he end up in the lobby of the apt building screaming for help because he could not call me. People thought I did not take care of him. I was there every day! Anyways. Alzheimer’s in women are many times worst than in men and it progresses faster. It is difficult to deal when someone is aggressive and uncooperative. My heart goes out to all of you.</p>

1118

<p>At this time my folks in their 80s live in their own house which is within a ten minute drive of most of their 7 kids 30-60 minute drive for two of the kids). We see and or speak with them many times a week. They are pretty active but slowing down a bit and getting somewhatore forgetful. They have friends ranging in their 40s through at least one or more in the 100s. Several of their buddies (many of their golfing peers) have moved to an AL facility that provides some meals and some shuttle service as well many activities. There are options for higher levels of care as well. It does motbappeal to my folks, but my sister swears she’d love living in a place like it. We’re of course hoping our folks can continue to age in place. They love that their golf course is 10 minutes from their home. Both golf many times/week. </p>

<p>Dad has a fabulous secretary. I fear that when she retires dad and my brother will have to retire too, as they’ll never find anyone like her.</p>

1119

<p>I can empathize with all of you dealing with elderly relatives and thank you for all of the wisdom shared on this thread. I have just experienced a taste of your lives and appreciate how difficult it can be.</p>

<p>I had talked to a 90-year-old friend of the family last month about moving her from her 1-bedroom apartment into assisted living (never married, went to college with my parents 60 years ago, adopted into our family as she was estranged from her own). She finally seemed ready to consider it, so my sister and I arranged to meet in her town to look for a good place for her and plan for a move to happen at a later date. She’s a 3-hour plane ride from me and a 4-hour plane ride from my sister. </p>

<p>In advance of my trip I had a box of produce and a Life Alert pendant delivered. Both boxes were placed outside her door on a Friday. When the boxes were still there on Monday morning, her neighbor became concerned and called the apartment office. The maintenance man unlocked the door and found my friend on the floor unconscious where presumably she’d been for 3-4 days. She was taken to a hospital, diagnosis was a stroke.</p>

<p>My sister was on a plane at that point so she arrived Monday night, and I flew in as planned on Wednesday. Our friend was at the hospital for 3 days, bruised, dehydrated and woozy. She was then transferred to an acute rehab hospital where she stayed for about 3 weeks. It was clear that our friend could no longer live on our own, so my sister and I started the process of packing up the apartment and looking at places for our friend to live. My sister had to leave town and I stayed on another 4 days to finish sorting/packing/storing/donating the contents of the apartment. We also looked at assisted living options, tried to get the paperwork for VA benefits together, and visited our friend in the hospital. It was exhausting. </p>

<p>I left our friend in the acute care hospital and flew home, then flew back last week for her transition from there to assisted living. </p>

<p>The most difficult part of the entire process was knowing what the right next step should be. I couldn’t get a clear answer from her caregivers what level of care she should receive. The definition of assisted living in this city was very different from what I’d seen on the East Coast with my MIL, which I didn’t realize until we were well along that path. The default level of care was much lower than I expected, with each additional service coming in at a fairly high price. She was evaluated by our first choice facility and rejected because they felt she’d require a higher level of care than they were set up to provide. So I had to scramble for another option, which will work but the cost of the add-on services is high. My family felt strongly that it was better to pay for the additional services rather than start out with a nursing home right away.</p>

<p>Fortunately my friend has perked up quite a bit, she’s appreciative and hasn’t second-guessed any of my choices. She’s now in her new assisted living home and I feel hopeful that she’ll be well cared for. My sister, parents and I will check in on her every month for the next couple of months.</p>

<p>My sister is POA and Medical POA, and I’m her backup. It helped enormously to have all the right paperwork in place.</p>

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<p>vballmom–your friend is lucky to have you and your sister!</p>