Parents caring for the parent support thread (Part 1)

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<p>My mom has always had a major dose of white coat anxiety. The dr. could speak Swahili and she’d understand as much as she does now. As I think I’ve mentioned, I’m an only child so I have the advantage of not having to run decisions past multiple people. Considering my mom abdicated all medical discussions about my dad’s illness to me back when I was 17, she’s gotten used to me being the point person for the medical issues. But I still can’t get her to take her medication correctly & she gets mad when I tattle on her about that at the doctors. Oh well. </p>

<p>bookreader: I understand your frustration. IMHO, my inlaws have less than stellar doctors & I don’t think my MIL is getting adequate care for her increasing memory issues. Their kids have tried in varying degrees to push them on it, but to no avail. There’s a lot of throwing up of hands and saying “well what are you supposed to do?” Part of it is that our parents generation isn’t comfortable questioning doctors knowledge & authority. I have no such issues :slight_smile: But I also understand that they’re not my parents and I have to respect family dynamics. I plan on having a chat with my FIL alone next time we get together though; he’s a great guy & the burden of taking care of my MIL is starting to wear on him. In the past he’s listened to me about some things when he wouldn’t listen to his own kids.</p>

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<p>I think you can try your best, and if they have cognitive ability, and you are not the legal decision maker yet, with all these issues, you responses are limited. Of course the parents in question should change doctors - but we cannot force them. </p>

<p>A related case in point: my mother lived alone - into her early 90’s. We gave her years ago one of those life alert watches, and then a pendant. She refused to wear it, in her own home, saying it was for “old people.” Her problem was stability, - she could discuss current events, balance her checkbook, take her meds. She had a difficult time transitioning to a walker (which she eventually did) but that life alert - forget it. We had many conversations about what she would do if she should fall. She dismissed our concerns.</p>

<p>I told her she was a fall waiting to happen. She fell - which i figured out after several hours when she didn’t answer her phone. Hospital visit, broken leg. Now she is in a nursing home cause she can’t get around much without a wheelchair (actually a very nice place, where there are many activities, trips, concerts, even adult ed, for the alert residents). Not all nursing homes are horror places. </p>

<p>So, you can try, but ultimately, if they are in charge of their mental faculties, it is their life - when the choice effects only them. </p>

<p>If my mother was still driving though, I would do everything I could to take away the keys, including legal intervention - because I wouldn’t want to sit by when she crashed the car, and injured others. My father was driving with early stage Alzheimers! For that, we took away the keys - admittedly after he got involved in a minor accident, which was scary. </p>

<p>I think I would also take away the dog - maybe a neighbor could take him, and the dad could get visiting rights? Its not fair for the dog to suffer. My mothers crazy choice was not to wear the life alert - and I could not wear it for her. </p>

<p>A long winded reply to various posts I know!</p>

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<p>Went through this for 8 years after my mom died. I handled everything. Long distance. With a sibling who dod nothing , and if/when hd did (rarely) get involved it was to stir up trouble. Lost dad over a year and a half ago and have still had to deal with all the estate stuff, selling the house, handling all legal/financial matters, you name it. We are almost done (I think) but it is a long and arduous road. Hang in thee everyone. I still have a room full (literally) of files and folders and assorted paperwork.</p>

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<p>Just recently a 93-year-old went missing in Ohio & was found in Michigan…dead from a traffic accident where he went left of center. He had Alzheimer’s and should NEVER have had car keys!</p>

<p>I am so lucky my father (at 90) still has his faculties and is very organized about filing papers for insurance, bank accounts, the house, etc. etc. etc. My brothers live close and have been taking good care of him. At my distance there isn’t much I can do on a day-to-day basis.</p>

<p>And he just decided on his own to leave his house and live in “senior housing” (not assisted yet.) Go Dad! :)</p>

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<p>You guys aren’t going to believe this but, after we took away my dads keys he must have had another set stashed and off he went…and another silver alert. This time gone almost two days. I can’t even describe how frightened I was. Not even just for my father but for what he could have done to someone else. He was located last night and is now in the hospital. Needless to say the car isn’t coming back home. My question is this. He’s being treated for a number of physical problems but no one has brought up dementia. I was supposed to meet with his doctor on Tuesday about addressing this problem. Where do I start? How does this get evaluated/diagnosed? When does it really begin to affect daily living? My father has a home health aide and food brought in and cleaning people etc. We are helping him with bills and other similar responsibilities. When do you know they can’t live at home any more? He seems very with it most of the time so this driving thing has me very perplexed. And of course my sibling is useless.</p>

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<p>anxiousmommy/(anniousdaughter)</p>

<p>For us the decision about moving my Mom revolved around 4 things (all which pointed to the change).</p>

<p>1) My Mom is among the dementia patients who wander. So we needed to basically lock her into the house and have someone there all the time to make sure she didn’t wander off. The full-time care also helped since my Mom had lost all concept of time and would get up at 2:00 in the morning and start puttering around the house thinking it was morning.</p>

<p>2) Safety … the house needed a bunch of adaptions to make it safe for her … locks so she couldn’t get out, stairs to 2nd floor, stairs to basement, stove, microwave, knives, scissors. hot water level, etc. These things are all fixable but my Dad was not pleased with everything in the house being a 5 stop process to get access and/or use. (Another form of safety was financial stuff … my Mom couldn’t have access to the checkbook, cash, or credit cards … and we took all her valuable jewerly after she started hiding it in all sorts of strange places)</p>

<p>3) Qualuty of Life … I guess my Mom could have stayed in the house longer if we had hired 24 hour care and modified a ton of stuff … however she was basically sitting around staring at the walls and talking to people who were not actually there. My Mom had been a very social person … moving to assisted living would provide much more interaction with people (and even just the chance to watch other people) and tons more activities for her to do.</p>

<p>4) My Dad’s quality of life . Taking care of my Mom 24x7 was totally wearing down my Dad … moving my Mom to assisted living allowed by Dad to live again.</p>

<p>As one person said the goal is not that you provide the best care possible for your Mom but rather that you arrange for your Mom to get the best care possible and you be the best husband, daughter, and son. To me this advice was dead-on. The three of us had turned into cranky caregivers … and after my Mom moved to assisted living we could be her relatives spending time with her again. I think we were late moving her but in the ballpark of the right timing. </p>

<p>(One last footnote … after moving to assisted living my Mom immediately started eating and sleeping better and gained almost 20 pounds … she thrived with the move … and that is a very common outcome)</p>

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<p>I held a conference yesterday on COPD (Chronic Obstructive Pulmonary Disease) for patients, caregivers and the public. We had over 250 signed up and counted over 190 in attendance at the event. So many of us are facing aging parents & relatives. Nearly everyone I know has an aging parent or relative that they’re at least partially helping provide some level of support or care for. It is indeed a sandwich generation we are all in and there is no end in sight. It makes sense to have a place for us to share, as so many of us have at least on in (or around) college age while we have relatives and/or loved ones in their 70s and beyond.</p>

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<p>RobD wrote: Part of it is that our parents generation isn’t comfortable questioning doctors knowledge & authority.</p>

<p>You are right on the money with this statement. My mother came with me to a prenatal visit (golly that was a LONG time ago!) and was stunned that I closely questioned the doctor about a few things.</p>

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<p>My parents & H believe your job as a patient is just to precisely follow doc’s orders NOT ask questions. H & they just smile & nod. When I went with my mom to her MD appt, I was the one who asked all the questions & the doc was happy to respond. Just glad he folks are as healthy as they are, even if their paradigm of medical care is different from mine.</p>

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<p>HImom, ten years ago, my dad was having angina pains right before they were scheduled to fly down to visit me. I told him to call his cardiologist and ask if it was OK to fly. A week later, I asked him what the doctor had said, and he said, “I left a message and the doctor never called back.” I said, “Well, CALL AGAIN!” The following week, I asked and he again said the doctor had never called back. I said, “OK here’s what you do: Call tomorrow morning and tell the receptionist that you’re going to call HER every hour on the hour until you hear from the doctor. Squeaky wheel.” Dad was shocked; his attitude was that if the doctor didn’t call him, then he must not need to talk to the doctor. He wasn’t ABOUT to make a pest of himself! Shortly thereafter, they flew down and while at my house, he had to go to ER for an emergency angioplasty.</p>

<p>bookreader, once when they were visiting, my mom had a blood vessel break in her eye. Not dangerous as it turned out, but it looked alarming, so I took her to an opthamologist. The doctor diagnosed it and gave treatment instructions, and I then asked a number of questions, the sort that all of us would ask – Here’s her med list; is everything OK? Can she fly home in a few days? When should it start to clear up? When we got in the car, Mom said, “Are you allowed to ask all those questions?”</p>

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<p>^^ LOL LasMa</p>

<p>I can so relate. Now my Mom asks me to come with her to Dr visits so that I can ask questions.</p>

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<p>Actually, I never USED to ask many questions until I was diagnosed with a significant, progressive, chronic health condition 12 years ago. My kids were diagnosed with a different chronic health condition, which has also made them stronger advocates about their own health. Our parents (and my H) just are NOT used to asking ANY questions of their MDs–they think that the MDs will just test for & tell them whatever is needed and they are just supposed to be passive & follow any instructions to the best of their ability. It is a SIGNIFICANT paradigm shift. Good for your folks that you are helping with these issues.</p>

<p>I had to ask the doc about my mom getting a flu shot, when it was safe for her to resume driving, what activities were and were NOT safe for her to do, etc. when we went for a follow up visit for mom after she fractured her sternum and ribs in an auto accident.</p>

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<p>My mom has a chronic bleeding condition. When she had her stroke, the EMT’s took her to a hospital where none of her dr’s had privileges. I asked them to take her to the teaching hospital as they were putting her in the ambulance but one looked at me and said “that one’s farther. Do you want her to die?” Guilt, much? So I capitulated. When we got to the hospital, I told every person I came in contact with about this bleeding condition, and how she couldn’t take any kind of blood thinner. Her CAT scan showed it was a bleed, not a clot so the treatment plan shouldn’t have included blood thinners. The attending doctor argued with me, so I explained the whole medical condition. </p>

<p>10 days later, after she was discharged to the rehab center, I get a phone call that she’s almost bled out and they had to rush her to the teaching hospital. Turns out that they’d had her on a blood thinner since the day of the stroke. I was absolutely livid; not at the rehab, they were following orders from the discharging dr. at the 1st hospital. I wanted to go back and choke that smug dr who didn’t listen to me & I was super p.o’d at myself for not double checking her chart every time I went to the hospital.</p>

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<p>What a nightmare, Rob! It’s a cautionary tale, though, especially for those who are new to all this. We have to be VERY involved in our parents’ care, and communicate long and loud to health care professionals. I once had a tantrum right there in ER, because it was the only way I could get them to pay attention to what I was telling them about my dad.</p>

<p>ETA – Not that you should be p.o.-ed at yourself. For crying out loud, why should you have to check your mother’s chart? That’s supposed to be their job!</p>

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<p>I was going in for a two-fer. Having my large intestine removed and also a hysterectomy. My original ob and I were in synch- remove everything except one ovary as he didn’t want me to go through menopause while having a temporary ostomy. Of course right before the surgery, he was deployed so I had to go talk to backup ob. He tells me they’ll take everything out including both ovaries as I’m over 40 and ‘don’t need them anymore.’ He argued with me for 10 minutes before I finally got ****ed and said in terms he might be able to relate- ‘how about we remove your testicles, because you don’t need those anymore.’</p>

<p>He didn’t appreciate my attitude, told him I didn’t appreciate his either. The morning of the surgery I had my hubby use a Sharpie and write this message on my stomach- ‘leave one ovary, or else.’</p>

<p>Found out later my GI doctor did all the removal and just let the ob watch. He did enjoy my note.</p>

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<p>3togo - your post could have been written by me! When my dad went to a nursing home, my mom got her life back and we could all go back to being loving relatives instead of stressed and (I hate to admit this) resentful caregivers. We visited him often (someone was with him almost every day) and the staff was loving and attentive.</p>

<p>I have 5 friends that have transitioned their parents to senior living situations (everything from independent living in a 3 stage place to full on assisted living) in the last two months. Every one of them thinks it was the right decision. Every one of them wished they had encouraged the move sooner. Many facilities are wonderful! I know it is a tough decision and very emotional and that getting old stinks, but a move may result in a much more positive outcome than expected.</p>

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<p>We have to be advocates for our parents. Two years ago, my mother almost died from drug-related side effects. Her blood pressure had gone up & the staff at the nursing home were trying to get it back down (she has a history of stroke). I was concerned about the number of BP meds they were giving her and the dosages. They were checking her BP and heartrate several times per day and were instructed to not give her a dose of meds if her HR dropped. She was becoming more lethargic and sleepy. The nurse practitioner asked me how aggressively I wanted them to treat my mother – the implication being that she was dying. I had checked the side effects of the meds they had her on and figured that her lethargy was due to the meds and asked that she be taken off them. The nurse practitioner agreed to do it and within a few days, my mother was fine. After this episode was over, I found out that she was given the BP meds regardless of what her HR was. If she had stayed on the meds, she would’ve died. </p>

<p>Being an informed advocate with healthcare professionals is absolutely necessary.</p>

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<p>Anxiousmom (daughter) - Your dad and mine would get along well. They could plan harebrained escapades together. I always said I NEVER got any calls from school about my daughter, you know the kind that start, “Hello Mrs. WNP, we have some concerns about your d…” But I received a lot of calls about my dad from his retirement community before he went to skilled nursing. “Hello, Mrs. WNP - we just thought you should know your dad was on RT. 000 with his walker waiting for a bus.”</p>

<p>Taking the car is easier when they are in the hospital. That’s when we made a move and sold the car. </p>

<p>As to the dementia evaluation - I think you were give some great points to consider and I will just add two more. You can google assessment of activities of daily living and use an objective checklist to have a tool to relay your concerns to the doctor. I used such a tool and wrote a note to the doc and dropped it off the morning of our appointment. I think using the language/categories of the checklist is helpful. I think the more you understand the types of memory and explain your dad in those terms, the better. You can provide the background info, the history, that the doctor can’t possibly see in an office visit. </p>

<p>Other post - I apologize, can’t remember who asked about switching docs - I agree with those who say, you can try, but if your mom is not willing it will be an uphill battle and she may not be compliant. If you find someone who is certified in geriatrics or at least is known to have an interest - I would suggest it to your mom, but save your breath if she argues. I would put it in terms of a hairdresser. Tell her that no matter how good a stylist you have, sometimes they start to take their client for granted and just do the same old, same old. I would say that maybe it was time to get a fresh set of eyes. </p>

<p>My mom’s hair is VERY hard to style and I often use hair analogies to get her to cooperate. YMMV! </p>

<p>PS - Mom is adjusting to assisted living. Some ups, some downs, but for me the worst of the anguish is subsiding. I have made the place look as much like hers as possible and have tried to make the move fun. I can only wait and see how it all works out. Dad is in skilled nursing and he keeps talking about when he moves in with her - and I just play along.</p>

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<p>I’m so glad to hear that your mom is getting settled, wnp. It takes a little time, but she’s on her way.</p>

<p>I think for a lot of our seniors, the prospect of moving into AL is worse than the actual event. I think they picture a dreary, antiseptic-smelling warehouse where they will be basically left to die slowly. Once they find out the truth – it’s bright and cheerful and fun, filled with caring staff – most of them do very well.</p>

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<p>My MIL moved into AL in Colorado (near my SIL) a couple of months ago. It sounds really nice. She still refers to herself and the other residents as “inmates,” though.</p>

<p>She agreed that her children can sell her house back in Wisconsin. So all five siblings, including DH, are getting together next week to figure out what to do with all of her stuff and clean up the house. It sounds like more than a 3-day project, but I’m staying out of it!</p>