Parents caring for the parent support thread (Part 1)

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3001

<p>ENsMom, one of the things that helps me most on this forum is the continuing reminder that we can’t make other people (our college kids, siblings, in-laws, or our aging parents) do things they don’t want to do. We may be able to give them incentives to change, as your brother is trying to do with your mom, but we can’t make them. You have to (get to?) decide how much you can do for your mom, and accept that the result may still be less than you hoped for. As long as your mom has the cognitive and financial resources to stay in her home, that’s what she will probably do. It’s great that she is willing to accept the in-home help most days of the week.</p>

<p>My siblings and I are 100%, or at least 95% in sync on how to help our mother, which is great. I had a talk recently with the oldest sib about getting added to our mother’s checking account, and setting up electronic access to her brokerage accounts just so she can act in an emergency if needed (checking), and make sure that nothing funny is going on. All is well now, cognitively and financially, so it’s a good time to act.</p>

<p>My DH’s family is much more scattered, and I shudder sometimes at how hands-off they are with their parents. I can make observations and recommendations when something seems really out of whack, but they aren’t going to step in until there is a crisis, and their definition of crisis is going to be well beyond my threshold of comfort. But that’s the way their family works, and my nagging won’t change a thing. I have a hard time going for visits because of the clutter and grime, but have resigned myself that we’ll just deal with it all at once some day. </p>

3002

<p>Thanks 12dandelion. I do agree that her situation will eventually be one where a move will be necessary, and I have discussed various senior living communities with my mother in which she has shown some interest. She has not been totally averse to them “at some time, but not now.” I feel that her ultimate recovery from this surgery will determine how close that time is, and full recovery from this surgery may now take up to 12 months with her setbacks. But it is still expected.</p>

<p>It is the being caught in the middle between my mom and my brother that is starting to get to me The things he says to me contain no compassion (“I have no sympathy for her since she insisted on…”). His anger in phone conversations is palpable. My mom, however, is unaware how much he hates the current situation and still expects that he will continue to come to her place one day a week, at least for the next little while. </p>

<p>I can’t decide if I should say something to my mom that my brother has expressed to me his frustration with the current situation, and that she might want to seriously consider just having her live-in caregiver six days a week instead of five, and telling him that he no longer needs to come up to her place each week. Frankly, I am getting tired of listening to his complaints on the one hand and listening to her displeasure each week when his visits turn out to not go so well because he finds 1 million excuses to leave the house while he is there. But a part of me feels like they are both adults, especially my brother, and if he doesn’t want to do this he should just have a discussion with her about it. It’s not my responsibility to deliver his messages to my mom, and if this is the way he really feels about it then he should be able to tell her, and not vent to me. </p>

<p>I am taking the day off of work today to take my mom to her surgeon for a follow-up appointment, so perhaps this will be a good day for discussion with her based on how this all goes. Wish me luck!</p>

3003

<p>ENsMom I think you and your brother need to be a united front with medical providers. If it is no longer safe for her in her home, look for safer options.</p>

<p>My mom had a strong will to live and die in her home, and we were able to facilitate that with my brother who moved a door away when that home was available for his purchase. However my mom who had dementia was not a hoarder (although had a lot of stuff stored in the large home). She had to agree to allowing the cook/housekeeper to do their job with her being nice to them, because the next step was going to be moving out. Brother was firm with mom and she knew she had to ‘behave’. Mom was compliant with her dementia and became very accepting of the situation. Before a higher level of intervention, she was forgetting to eat (or comprehend how to get food out of the refrigerator; if you put food in front of her, she ate). For a while she did have meals on wheels.</p>

<p>One option may be to find a nice place for her to recuperate - respite care. If she likes it there after the short respite, she may be willing to let go of the dream of keeping up her home which she is not able to do w/o lots of help.</p>

<p>It is a fine line on being supportive of your mom while not enabling a bad situation. If she is unhappy in her surroundings and the move long term, it will diminish her quality of life - but maybe a short period of unhappiness may have her see a ‘new normal’. However safety trumps some of these QOL concerns - if your mom can compromise. Perhaps look at various options, so she can choose the best for her (living in her home is out of the choices).</p>

<p>If she meets the assisted living criteria, perhaps a medical provider will need to tell her that is ‘doctor’s orders’.</p>

3004

<p>We try to care for them out of love and dedication- and because it’s right- but I have to remind myself we have no real training, most of us didn’t pick caregiving as a life direction and we can’t even always tell what’s up. I know some family members will pull back just to not be bothered. But I think it’s important to try to understand that, in ways, caregivers also become needy, when the burden is heavy. </p>

<p>When my grandmother would complain my brother wasn’t attentive, I’d try to remind her of something good he’d done. (He was great with phone contact.) At these times, it often doesn’t help to line up sides. That’s not saying one sib has to take over, so the other is fine. But sometimes even acknowledging a sib’s anger and frustration, letting them vent and seeing what Plan B is possible, can clear some of the air just enough.</p>

3005

<p>@SOS your graduation/anniversary sounds lovely. We, too, have many JCPenny photo shots. Used to do it every christmas for years and years. You did great!</p>

<p>@ensmom I would certainly acknowlege your brother’s discomfort in the clutter and give him massive kudos for sucking it up and going there anyway. I used to not understand how difficult it was for some people because it didn’t bother “me” so much. But other people are NOT me I <em>finally</em> came to realize. I don’t think you should step in and be the phone between your Mom and Brother. I do think he has a point, but I only see that from the rearview mirror of many years of my DH resisting and showing me that I was taking too much of HIS life for my mom and her problems. Yes, his family has a completely different approach in elder care and family connections. It is one of those things that takes a lot of time and thinking to get our heads around. Same with brother and possibly his family.
I have no solutions, everyone cobbles together what works for them in the moment. I do point out that one day a week is almost 15% of a life and 50% of his free time if you and brother are working and going on weekends. That is a lot to ask of anyone. </p>

<p>@Momof JnL That is something to keep posted on the mirror “I can only control me and I can only do what I can do. The outcome is not in my control.” </p>

3006

<p>“Serenity Prayer” written by Reinhold Niebuhr (1892-1971)</p>

<p>GOD, grant me the serenity
to accept the things
I cannot change, </p>

<p>Courage to change the
things I can, and the
wisdom to know the difference. </p>

<p>The rest of the prayer is here <a href=“The Original Serenity Prayer”>http://www.sandersweb.net/ed/OriginalSerenityPrayer.html&lt;/a&gt;&lt;/p&gt;

<p>It is important for each of us to do what we can and accept what we can’t. My relatives are not nearly as alert and sharp as they were but still doing much better than many of their peers, so we are grateful for that. They have applied to move into a retirement community that has various levels of assistance, up to and including 24/7 care, so that is much more attractive to them and all of us than them living with any of us. Wish they would start disposing of things, as they have packed closets and closets of clothing, most of which hasn’t been worn in decades (literally).</p>

3007

<p>Hello all,</p>

<p>I’m hoping maybe I can get some advice here. I haven’t read hardly any of this thread so I’m sorry if this has been discussed before.</p>

<p>My grandmother passed away almost exactly a year ago. She had been sick for a really long time so it was almost a good thing because she wasn’t suffering anymore.</p>

<p>Shortly after she passed away, my grandfather’s condition started to deteriorate pretty rapidly. I think this is for a couple of reasons: 1. He was very, VERY focused on taking care of my grandmother, and I think once that routine was gone he didn’t have much to focus on anymore, and 2. The rest of us were focused on her and so didn’t get a chance to really notice any small changes.</p>

<p>He was diagnosed a few months ago with Lewy Body Dementia (Dementia and Alzheimer’s both run in the family.) My frustration right now is that my parents (mainly my dad, who is my grandfather’s son) does not want to make any changes or decisions. They did finally take away his car keys a few months ago, but have decided that he can take a test and let the DMV decide whether or not he can drive (we are all confident that he won’t pass, but even if he does, he should NOT be driving.) My dad refuses to admit that his condition is getting worse even though the rest of us can clearly see that he IS getting worse. He constantly has hallucinations and will act on them (the most concerning was when he cut all the stuffing out of a chair because he thought one of his grandchildren was trapped inside.) He says the people he sees are stealing from him, so he hides things, then can’t find them and again says people are stealing from him.</p>

<p>How do I help my dad see that his condition is deteriorating? My main concern at this point is that something terrible will happen (God forbid) and my dad will say “We should have done something sooner.” and will blame himself for anything that happens.</p>

<p>My siblings and I–and my mother to an extent–all have an understanding that at this point grandpa basically has the executive function of a child and needs to be treated as such; but dad doesn’t want to be the “bad guy” and thinks that grandpa needs to have as much autonomy for as long as possible. </p>

<p>Here is where things stand: grandpa comes over for dinner almost every night, dad takes him home and gives him his nighttime meds and does any errands that need running. It is always extremely hot in grandpa’s apartment when we get there because he can no longer work the A/C. (usually 85+ degrees.) Dad then leaves the morning medicine on a paper towel on the table with a note that says “after breakfast” on them. Rinse and repeat.</p>

<p>I don’t know what I can do. I feel like I don’t have a large say because I’ve only been back home from Indiana for about three weeks; moreover, I’m the youngest child and I don’t want to overstep. But I want my grandfather to be safe and get the help that he needs for his disease.</p>

<p>Finances used to be the main excuse; grandpa has quite a bit of debt. However, the last time I spoke with my mom about that she said they had figured out how to set everything up with the attorney to get state aid for his care.</p>

<p>I would greatly appreciate any advice.</p>

3008

<p>HisGrace, </p>

<p>It sounds to me like your grandpa is getting pretty good care from your father. Your father is feeding him, doing the errands, giving the meds. Soon that won’t be enough, but it might be enough now. </p>

<p>If he is not wandering, he might be pretty safe in his apartment.</p>

3009

<p>Cardinal Fang–the issue is that there are other things happening. He’s gotten locked out, lost things, etc. The night he got locked out he tore a window screen off trying to get back in even though his cell phone was in his shirt pocket. He also moves things around, hides things, etc. when we’re not there because “the people are _____” (moving it, taking it, etc.)</p>

3010

<p>Unfortunately, it may take something significant to happen before your father really acknowledges how much your GF has deteriorated. My mother’s dementia seemed to come on suddenly, apparently after an undiagnosed stroke. At first, she was claiming that people were breaking into her apartment. She changed the locks. Like your GF, she hid things or even destroyed papers so they couldn’t be found by the “intruders”. I lived over 2 hours away at the time, and maintained contact by talking to her daily and having neighbors check on her. I knew I needed to do something when she incorrectly turned on her gas stove. Fortunately, she lived in an apartment building and neighbors smelled gas. My mother claimed that whoever broke in had tampered with her stove. At that point, I knew she couldn’t live by herself anymore; talking crazy was one thing, but doing something dangerous was something else.</p>

<p>What does your GF’s MD have to say about his condition? Does your father accompany your GF to his appts and talk about what your GF is doing? It’s not always easy for us adult children to accept these changes in our parents, so hearing it from a professional, as opposed to a family member, may help your father.’</p>

3011

<p>@HisGraceFillsMe, your local government may have an office that helps with issues of aging residents. Perhaps you could google it and talk to someone there about what you, yourself, can do, and resources for your dad to deal with this. Really, it doesn’t sound safe for your grandfather to stay in his home alone. But as I am sure many parents here can tell you, it can be very difficult to wrap one’s head around the idea that they have to figure out what mom or dad needs in his/her current condition, and then tell them that it has to be done and implement the plan. Almost everyone with an elderly family member to worry about has a period of time when they really wish it would just go back to what it was and that maybe what they are doing right now will be enough.</p>

<p>Excellent idea for your dad to go to the doctor with grandpa. Maybe you could come too just in case your dad doesn’t mention what’s going on?</p>

3012

<p>Both my father and my older sister currently go to the doctor with grandpa. Yesterday they had an appointment with the neurologist, who asked my grandfather most of the questions and went with what he said, then said they’d see him again in three months.</p>

<p>My dad told the neurologist he doesn’t think it’s better but also doesn’t think it’s worse. We had a long conversation about that last night and my dad has agreed to start looking at facilities for him. </p>

3013

<p>ENsMom, who do you think is “in charge” of your Mother’s care? Who do your mother and brother think is in charge? Some of the dynamics sound like the kind of things that happen when the pecking order is unclear. Does your brother think that your mother is not competent, and that is why he brings his complaints to you? Do you
think you mother is competent, and that’s why you let her make decisions, and expect your brother to follow her wishes instead of telling her what to do and expecting her to comply? Is this a family dynamic that has been going on a while in other areas? </p>

3014

<p>Thanks everyone for your input. I did have a talk with my mom regarding my brother and she has agreed to work more with some backup caregivers and rely on him less. She did get a little indignant at first, but I did point out to her that he has done a lot over the past three months and it is just too much for him to continue to do this long term, particularly now that she has had a complication and needs care for a longer then we all anticipated.</p>

<p>Cognitively, my mother is 100%. She does have a very strong desire to remain in her home, and I do think that since she is strong cognitively and is just having a difficult surgical recovery, that she does deserve the chance to wait this out and see if she can recover enough to take care of her own needs around the house, perhaps with some help a few hours a day a few days a week. Prior to this surgery, even though she had significant pain die to a faulty artificial hip joint, she took care of all of her own needs with only a cleaning lady twice a month.</p>

<p>HisGrace it is very nice of you to be so concerned about your grandfather. I know this is a difficult situation, we went through this with my mother-in-law and are currently experiencing this with a close friend of the family. The accusations of stealing, the hallucinations, we saw it all. However safety is a concern, as a matter of fact my coworkers grandfather, who has dementia, was rushed to the hospital last weekend after getting up in the middle of the night by himself and eating laundry detergent pods. He is in the ICU and may not survive. The home of an adult with dementia needs to be child-proofed like you would for a toddler.</p>

3015

<p>I am taking my mom back to the meeting spot this morning! If I may vent about family - I went up to see her, saw her and took her to the ER. Had her come stay here for 2 1/2 weeks while she recovered and built up strength. Took her to the ER while she was here, found a dr who would see her, and generally waited on her hand and foot. I also hired a visiting aide to start tomorrow at her house. My other sister sold mom’s place and got a complex application in for another apartment building. So I’m talking to my 3rd sister who just complains that she didn’t get to enjoy this long break because she still had to hear what was going on. Ummm…I had to take her to the hospital and we all needed to talk about the sale of the place, including closing date. Then 3rd sister texts me to tell me she’s working today and tomorrow she won’t go see mom. sigh I just said, brother is picking her up, and the agency starts you don’t have to have anything to do with any of it or mom. Just stay away, the rest of us did everything. sigh I thought it was a pretty good teamwork situation, you’d think my sis would be a little grateful we all took care of everything. </p>

3016

<p>Update from my May 27 post + additional question.</p>

<p>Update: MIL is moving to assisted living today. DH and sibs found a really nice facility close by which happened to have one opening. It was interesting to them how different the term ‘assisted’ is defined at different facilities. The unit that was available is smaller than what they preferred, so they don’t want to put up pictures, etc since they assume they will move her when the (slightly) larger unit becomes available. I suggested they make the new place as homey as possible to make MIL feel like it’s her place and because MIL may not want to move again. How much trouble is it to hang a few pictures? Ahhhh. Being a DIL in a large family can be so tough sometimes!!</p>

<p>Question: MIL has had a number of anxiety attacks recently, starting late in 2013. She will get herself all worked up over something that seems trivial to the rest of us - like how is she going to be able to get to an 8:30am doctor appointment on time (appointment wasn’t until 2 weeks later). Another example, MIL thought DH’s brother was picking MIL up at 9:30am to go see AL facility (he had told her 11:30). When he hadn’t arrived by 10:00 am, she had worked her into a full-blown anxiety attack and called DH’s sister convinced she was dying. Over the weekend, leading up to today’s move, MIL has had no less than 4 additional anxiety attacks, all related to her concerns about the move - how heavy her bed is, how are they going to set up the TV, how she doesn’t have the right size sheets or bedspread, etc. Does increased anxiety go along with aging and/or beginning dementia?</p>

3017

<p>Cncy gal- yes, anxiety can accompany the onset of dementia. It can also be that, like many traits, it is highlighted with the aging process itself. This sounds quite difficult for all. The recent uptick could be related to the stress of transitioning and hopefully there are caring, tuned in staff to be supportive and keep an eye on things. True panic attacks with hyper-ventilation can sometimes be helped with breathing slowly with the person ( sometimes I’ve seen it done with a small paper bag at the mouth). If it persists, medication or other techniques to calm things down early can be useful. Panic attacks sometimes co-exist with depressive symptoms as well. </p>

<p>It seems like keeping track of plans and details is hard for your MIL at this point. If she is still mostly with it, perhaps structuring her new place with a calendar, white board, large clock, etc. to help her consolidate her schedule and routines would help. Also, call regularly about schedule issues to be reassuring and let staff know plans, so they can help. . It’s always hard to know how entrenched symptoms will be when you see them at first, especially with a significant change. Big disruptions can also reveal difficulties that were well masked by established routines. It bears watching, as this can be distressing and likely remedied if intervention is indicated. If there is information about the context of this onset in DC., 2013, that may also help. Best to all. </p>

3018

<p>FIL has been noticeably anxious the past few years, maybe he is more anxious than he once was or maybe he was always this way and can no longer hide it well? When he had a traumatic event happen, the Doc gave him a prescription, but as far as I know he won’t take it & has not tried it. I am not sure all the reasons, but mainly he seems to be against meds for anxiety and does not feel he should need them.</p>

<p>I did call his PCP last month and gave them an update, asked if they could talk to him about anti anxiety meds, FIL would not bring it up, but he might take the doctor’s advice.</p>

3019

<p>Well, I feel nervous endorsing anything on a forum like this, but my dad has been taking Xanax for almost two years and it has been helpful. He is allowed to take two a day, but only takes one in the middle of the night because that is when his anxiety hits.</p>

3020

<p>Somewhere on CC is a thread asking about posters best contribution to CC … for me it has been starting this thread. While I have not contributed a lot to the thread I always read the thread and am heartened to know so many of us are having common experiences and amazed at the support and advice shared (hence my silence as I have little to add to the great comments already given).</p>

<p>A particularly bumpy time in my Mom’s journey with Alzheimer’s was the impetus for starting the thread. Time for update and a vent. Mom has placed on hospice care … her death is not imminent it is likely 6-12 months away … however she has basically lost any interaction with people and can’t function on her own. Her experience through Alzheimer’s has been about as good as it could be … her hallucinations and delusions are overwhelmingly good ones (she saw dead relatives, extra children and grandchildren, etc). In the hell that is Alzheimer’s as her son all I can hope for is she is “lucky” and catches pneumonia or something and is released from this hell ASAP and does not have to endure another year.</p>

<p>Someone who was so good, loving, and caring as my Mom should NEVER has to experience such an ordeal … may whoever invented Alzheimer’s burn in hell for eternity. </p>