Parents caring for the parent support thread (Part 1)

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<p>I have no memories of the two weeks before my heart attack or of the week afterwards (full arrest, had no oxygen for some period of time, then was in an induced coma). The neurologist who evaluated me for driving three months later was stunned at my level of cognitive functioning (in a good way). I still have word retrieval issues and can tell some subtle differences, but it must be a while nuther ball game for someone who is older and has gone through serious medical trauma to have to deal with the aftereffects of anesthesia or a heart-lung machine.</p>

<p>Friend of mine had open heart surgery where she was placed on bypass and the docs told her in advance that things might be cognitively different afterwards. They were right. She said that mental fuzziness is real.</p>

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<p>Hello all. I have not opened this thread very often because I am still getting back on track after dad’s death. Some of the posts are just too close to home. I am sorry to be selfish, but I generally come to the Cafe for lighthearted discussion (Dressing Young, Downton Abbey, etc.)</p>

<p>Jshain & lima - I am sorry for your loss and I hope you are doing okay. </p>

<p>Momsquad - my dad’s surgery for a bowel re-sectioning was the beginning of the end for him. I don’t know whether the surgery, the anesthesia, or the two weeks in the hospital was the cause, but from that time on - he never was the same. He retained enough of his mental functioning to be dangerous, he talked a good game and sounded perfectly reasonable to anyone who didn’t do some serious probing. His JUDGMENT was really affected. He would get some harebrained idea and present it like it made total sense. </p>

<p>When dad had his first surgery for colon cancer 24 years ago, he came out of surgery with a permanent hearing loss. Totally deaf in his right ear. So, yes, anesthesia is not benign. </p>

<p>My one piece of advice to all of you who are caretakers - remind yourself that your primary role is that of daughter or son. Sometimes when we are busy doing all sorts of jobs for our folks, we forget that’s who we are. They become just another job to scratch off our list - and that’s not a criticism - it is just the way it is.</p>

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<p>WNP2- Glad that you are doing what works for you. It’s a big part of keeping it all together. I like your thoughts about being a daughter or son. When my parent was dying and all roads were leading to me (hospice, assisted living, private duty, medication consultations, bill payment, funeral plans, etc.), I remember telling the team that I wanted to focus on being a daughter, not a social worker. It helped to make that distinction . In the end, what you remember are not the logistics, but moments with your loved one. It is a bit of a balancing act, because some of those details dictate quality of life. While it is important to keep an eye on the burn-out factor and the need to re-charge, there are times when circumstances are so demanding that you can’t see options. </p>

<p>HImom- Great to have shared caregiver/patient meetings. Also have seen the rationale for times when both parties congregate separately. There is so much power in community. </p>

<p>Thanks also for mentioning the Caregiver Foundation of America. I hadn’t heard of this group before your post.</p>

<p>Interesting how many people have lingering effects post-op., regardless of age.</p>

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<p>I’m glad that those whose parents have passed are continuing to contribute to this thread. Your reflections and wisdom ‘looking back’ are very helpful to those of us trying to navigate this new phase of caregiving. Worknprogress2, your dad’s post-surgical experience sounds eerily similar to my mom’s. I recall reading somewhere that some anesthetics can take months to completely clear from the body and probably even longer in an elderly person. As Travelnut pointed out, the sensitivity is probably highly variable among individuals.</p>

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<p>The Atlantic magazine has a very interesting article on consciousness and anesthesia this month- like many things I don’t think it’s as well understood as I’d assumed.<br>
Thank you to everyone who posts on this thread and condolensces to those who have lost their parents. These are current issues for so many of us. I’m trying to sort things out for my remaining elderly parent who’s fortunately very sweet these days but struggling with memory and orientation issues. I’m an ocean away from home with very sporadic Internet access and no cell phone service so my usual coping mechanisms are being challenged!</p>

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<p>I read this thread with interest as the daughter of parents who are in a precarious position. My dad had a pretty major stroke three years ago and is pretty much completely left-side disabled. He is permanently wheelchair-bound, cannot walk or stand independently and the active, independent life he led with my mom is gone. She is his primary caretaker, with aide assistance about 5-6 hours/day. My sisters and I have done what we can to make their lives as easy as possible (access van, bringing in dinners, going to doctors with them), but what my mom needs is a break and no one can seem to get her to consider leaving him for a few days. The only time she has left his side in 3 years (he’s now 85 and she’s 80) has been to attend the college graduations of my daughter and my niece, and she was a nervous wreck the whole time. Mind you, when she was gone we had 24/7 aide help and one of us stayed in the house as well. Her personality (very OCD-like) makes it difficult for her to sit and relax when she can if there are dishes in the sink or there is laundry to fold - and she cannot allow others to do those tasks, because they’re not done “right.” It’s killing me to watch her drive herself into the ground (she has a longstanding cardiac condition and even her cardiologist has tried to get through to her),knowing that as well as she takes care of dad, none of my sisters or I will be able to do the same, in the same way if she is gone. </p>

<p>I just returned from my bi-monthly 4 day visit (I live 400 miles away), and I’ve been a wreck since returning home. Intellectually I know that I’m doing all I can, as are my sisters, but it’s so difficult to see her in such a state all the time. As you might imagine, her exhaustion allows to be far less patient with him as well. Assisted living is not an option, as he would not qualify, and she has already made us promise (not that I know that we can comply) that we will not put him in a nursing home if something happens to her. My guess is that without her he too will pass quickly since they have not been apart in 59 years. But who knows, systemically she has kept him in impeccable health but for the disability factor. </p>

<p>Not sure what if anything I’m looking for, but it’s nice to have a place to get this off my chest. Thanks for listening.</p>

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<p>Runnersmom -</p>

<p>Where to start? My mother-in-law was a carbon copy of your mom (except for the dishes in the sink - she could ignore those). She cared for FIL who was bedridden with MS. Had help in the home, but by golly, she was not going to leave his side. I always said the pope and Christopher Reeve didn’t have better care. </p>

<p>I always got the feeling that she was almost embarrassed to enjoy herself (and she was a really fun loving person). As though it were disloyal. Or that someone would question her devotion. I know this is just one little idea, but since I was the DIL, I think I saw things more objectively. I talked to hubby and his sister and begged them to stop saying things like, “I don’t know what dad would do without you” or “I don’t know how you do it.” </p>

<p>I really think all those well-intentioned comments from everyone locked her into this role. The caregiver extraordinaire. Even if she wanted to escape, how could she? We had turned her into Mother Theresa. </p>

<p>Fortunately, she had a son (my hubby) who she WOULD listen to. He would talk to her and give her something very specific to do (like go out to the movies) and tell her to tell her friends that she was doing it because he insisted. I don’t think that strategy will work with daughters, but for that generation, it eased the guilt telling others she was doing something because her son insisted. </p>

<p>One last thought. I am a big proponent of lexapro or something similar for our aging parents. Depression doesn’t always look sad, it can look just plain old grouchy. I saw a huge difference in dad and in the other elderly woman for whom I am responsible. Helps a little with the anxiety factor as well as the depression. For course they don’t think they need it - but as I said in the doctor’s office, SOMEONE was leaving with a prescription.</p>

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<p>Worknprogress 2, Thank you for bringing up the topic of medication for depression. My mom has come out and said she feels depressed on most days, something completely new for her. However she is so eager to put on a good face for her doctor that she won’t bring it up during appointments. I will be accompanying her to an appointment with a new doctor, a geriatric specialist, next month. I am determined to bring up her depression and ask about medications. I had planned to ask about Zoloft because I have heard it is associated with weight gain and my mom desperately needs to gain weight. Hopefully the doctor will have a suggestion for the best treatment based on her symptoms. If you know two people who were helped by Lexapro I will ask about that too.</p>

<p>Onetogo2, we’ve had great success chatting with my mom on Skype. It requires another person assist her with the computer set up and connection, but her face just lights up when she sees us on the computer screen. The visual aspect seems to add a lot to her feeling of connectedness, since the purely voice communication over the phone sometimes becomes rambling and confusing.</p>

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<p>It sounds like we all have the same mother. We are at our wit’s end with our mother. Dad has late stage Parkinsons and is in tough shape. Fortunately we do have wonderful live-in help. However, mom thinks she has to micro-manage dad’s care and everything else in her small world. She’s become some sort of OCD martyr. She’s miserable and nasty most of the time because she’s overwhelmed (remember, she DOES have help), exhausted, and takes things out on my poor dad. Even the grandchildren have noticed. However, she is from the generation that doesn’t bother doctors with “little stuff”, like medication. 2 years ago, after much prodding from me, she did go on Zoloft, but it really didn’t help her. She never asked the doctor for a different dosage or different medication. Just before Christmas, we had to have a family meeting with her about her behavior. It was not pretty, but it just confirmed to us that she needs help. She did call her doctor and tried xanax for about a week. It made her very dizzy, so she discontinued it. She’s very private about all this, so no word on whether she’s asked for something different. I have 2 sibling that have had good success with lexapro. We’re hoping she’ll try that next. Its so hard to see her so miserable, knowing there is something she can do to help herself.</p>

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<p>Well, mom, kicking and screaming, agree to go on lexapro (as is dad - often prescribed post-stroke) but she recently told the doctor in no uncertain terms that she wasn’t open to increasing the dose. Oh well. Generally she’s not nasty to dad, and can intellectually understand that the changes in him that affect her so deeply (asking her to do things that aren’t absolutely when he can see she’s exhausted, not eating the food she’s spent so much time preparing etc.) are not things within his control, but we know she needs more help, money is not the issue at this point and we know that she will do herself in if she keeps this up. I will keep suggesting that she use her aides for more than dad’s care and that she take the time to explain to them how she wants things done if that will allow her to let go of some of it. Don’t get me wrong - without her I think dad would be long gone. This woman noticed the inevitable pressure sores, got him to the wound care doc, and has managed to keep them at bay. She was told that without her care (obsession would be another word!), there’s no way he’d be in the physical condition he is today. Mixed blessings. And before the stroke they spent 24/7 together, doing things, traveling, going out etc. They rode a motorcycle together until he was 70. So not going out without him doesn’t surprise me, just saddens me.</p>

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<p>For a few years before she passed away my DM (this is CC after all =) was on Elevil. Towards the end when she got very confused I found out she was taking it intermittently like you’d take advil. Feeling blue? Pop an Elevil. I nearly blew my stack! When I explained she had to take this every day she laughed and thought I was being such a silly goose. I had to call her doc’s office and explain the situation to the nurse who had a little chat with DM. Just one of those funny stories now but man, not so funny at all at the time.</p>

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<p>Very sympathetic to all these anxious, controlling and martyrdom-prone elders, as well as their families. I once heard a geriatric specialist say that with aging, one generally doesn’t fundamentally change, but rather become “more” of who one has always been. It must be hard to be losing various capacities as demands on you increase and your OCD is driving you. It also may be easier to obsess about details than acknowledge impending loss.</p>

<p>Tough on those who want to help, but get driven away. Medication can reduce many of these symptoms, but it often takes tenacity to go through a bit of trial and error. The right dr. with geriatric/psycho-pharmacology expertise can make a difference. Mansfield, it is helpful to know what has worked for a patient or their family members previously. I know with psych meds there is sometimes a correlation which could save time and aggravation (if the med is a good fit for pt.). </p>

<p>Runnersmom- Do you have a relationship with your Mom’s drs. to see if some strategizing can be done? So aggravating that medical advice is ignored, especially if there are no side effects. Also, the language used to describe what a medication is for can make a big difference. “You are juggling a lot and understandably concerned about… I see this all the time and many find they are better able to serve as caregiver if they are taking good care of themselves” is very different from “there is a way to be less irritable, less depressed etc.” Not suggesting misinformation, just an approach. Empathy is an ally if the Dr./family can use it. This generation was not raised in the enlightened days of psychiatry (such as it is).</p>

<p>Sad how she must miss the good times with your Dad. At times, I was able to encourage my similar mother to accept help by letting her know how much she mattered to me and how hard it is to see her over-extended when there are other options. I let her know I wanted to share an increased quality of life with her. It can be very abstract to visualize how increased help, assisted living or nursing home care can allow one to enjoy everything more. I helped my folks with this process (largely as a cheerleader), for months before they made there big changes. It was worth it. </p>

<p>Best to all. Your families are lucky to have you.</p>

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<p>runnersmom, hugs to you.</p>

<p>Besides what’s already been posted, one thing I can think of is appealing to your mom’s desire to do what’s best for your dad – and then leading her to the realization that SHE isn’t what’s best for him. At least, not for the demands of caring for him physically. When my dad was starting to have balance problems, my mom used to walk behind him when they were going uphill. Why? So she could catch him if he fell! When she told me this I said, “REALLY, Mom??? If he falls, you’re BOTH going to end up on the ground, and how is that going to help him?” She did stop walking behind him after that. Maybe you could point out to your mom that wearing herself out is not doing him any favors in the end.</p>

<p>Another thing is what wnp posted:</p>

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<p>So you could present it that way: If they move into Assisted Living together, the staff would do the difficult job of caretaking, and she’d have the time and energy to simply enjoy her husband again.</p>

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<p>^^^ was true for my folks. When my dad transitioned to AL, mom was relieved of the tasks of caring for him and could focus on both of their emotional well beings and enjoy the time together. Such a relief for both of them. My mom’s health improved after the transition (less worry, less physical caretaking, and more ability for them to be themselves not a patient/caregiver). Blessings to all.</p>

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<p>Excellent point. We’ve noticed the mom, in particular, has become an “extreme” version of the mom we grew up with. When I look back on my childhood, I can see her OCD, anxiety, depression, and the need to control everything and the resulting self-sabotage. At the time I just thought she was just a really thorough mother. She white-knuckled her way through life. You’d think at age 82, she’d want to loosen the grip, but noooo…she’s even given up her nightly glass of wine.</p>

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<p>‘I once heard a geriatric specialist say that with aging, one generally doesn’t fundamentally change, but rather become “more” of who one has always been.’</p>

<p>Dear Lord! I hope this isn’t true…I’m an anal retentive control freak with touches of OCD. My kids will never put up with me. ;)</p>

<p>I saw this on a tshirt.-</p>

<p>I have CDO
It’s like OCD but the letters are in order</p>

<p>As they should be.</p>

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<p>Lol Chuckledoodle.</p>

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<p>Hi All! I, like WorkinProgress, have been away for a bit because I needed a bit of a break. After getting the call about mom’s fall, I began to get nervous when the phone rings in the morning…She recovered well from the fall - didn’t end up needing CT scan or xrays, but no walking alone outside. PT has started up several days a week, so she is happy to do the work and have the company! I guess I’m a bit lucky, because everyone loves her and thinks she is just the sweetest thing! :slight_smile: She’s very big on, “Oh don’t mind me. I’ll be OK”. Hard to tell what she is REALLY thinking. She is on Paxil, by the way, and really likes her primary (that’s a very important relationship at this time I think) and was willing to try the meds. the hope was get on em before everything in life gets worse, and that was just in time, because it’s been downhill ever since…</p>

<p>However, now, it’s not totally true, as she is enjoying her new digs. I felt that same sense of guilt mentioned above, like I was just leaving her there at this awful place. Like I was taking her from her home. And also like what has been said, she can cover and appear more competent. That is why when assisted Liv offers to drive to Doctors appts, I would not want her to go. I need to take her to listen and remember what is said, and make any arrangements for tests or whatever. And we did not have to drag her kicking and screaming. She was reluctant for a few days, but as the weeks have gone one, she is getting more and more comfortable. She went back to her house with a good friend in hopes of bringing back some books. Turns out she didn’t feel excited or even sad to be there. She just wanted it over. That was her house with my dad and with out him, it has no meaning. So for me, it’s smoothing over a bit… and I feel very bad for those of you with many more hard times in front, and parents who are challenging to deal with. Keep being their sons and daughters! I still forget this…</p>

<p>To address the end being long and yet sudden - It is so very true. Even though you may know for days or weeks that this is the end, well… I know I wasn’t prepared for it. I couldn’t really talk to him for 3 1/2 months after his stroke, but I miss “talking” to him, really talking to him. So it was gone for months while he was alive, and now I miss it when he is gone… Such feelings I didn’t know I had. I had very, very little experience with death, and I really enjoy this thread because we are in such similar situations, and can give advice, comfort, ideas, or at the least, cyberhugs! </p>

<p>Lastly - at 9 am last friday, the call came from the Home Owners Assoc. where mom’s house is…The weather was freezing and we were told that the pipes burst and that there was water all over the house, running out of the garage and out the back of the house as well. Driving to the house to see what happened reminded me of driving to their house when I’d gotten the call that he’d had a stroke. It is so unknown, and then in a few minutes, it will all be known… What we determined was that a humidifier hose in a small utility closet, popped off and the water kept running and running… I don’t know for how long. There was SOOO much water damage…But a cleaning company came in and have been working on the drying and the repair contractor will come in Friday to estimate repair. On the bright side, it looks like almost the whole house will be repainted (all contiguous), something we needed to do anyway. Also, the carpeting needs replacing. Included!! Not anxious to clean up junk/stuff and get rid of stuff before the sale… My OWN house is full of so much crap. I don’t want to make the decisions on what to throw out. I have a hoarding nature :wink: My sister does not, so she will be like, “CHUCK it!”</p>

<p>We have an appointment with a tax/elder care attorney in Feb. Bit nervous about it. We already have POA through lawyer, and the advanced directive and health care representative (both notarized). It all worked for my dad’s stuff. No one questioned anything. But he may want to re-do stuff. What was mentioned about where to start is really the challenge. it’s like we have to write a thesis and we just don’t know how to go about it. Along with trying to be a daughter and not just a phone call maker and paper pusher. </p>

<p>Forgive me. I take Ambien to sleep and am really supposed to go straight to bed. I only took 2/3 of one… but i might not be all that clear…</p>

<p>I am so sorry Lima for the loss of your mom and jshain, for the loss of your dad.</p>

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<p>I always felt a LITTLE guilty about this - but I will confess to you all, my dear caretaking sisters (and any brothers out there) that I sometimes wrote a letter to the doctor BEFORE we arrived for the appointment. The letter would be very short, but it would summarize the concerns I had without the patient or spouse there. Two of the doctors were just amazing. And in our parents’ generation, doctors are generally held in pretty high esteem (except for those times when my dad decided someone was a “quack”) so they were more likely to listen. </p>

<p>As I have mentioned before, I was (am) responsible for several people. Mom (82 with rapidly progressing dementia), MIL (who’s great @ 87), and a couple I will call Edith (88) and Eddie (92). Mom is in assisted living, MIL in an independent apartment, and Edith & Eddie (not real names) are in their home with help. I am having a wide range of experiences with very wide range of personalities. </p>

<p>One thing about anti-depressants. Lexapro worked the best for dad, but at some point when he had to change primary care doctors, that doctor switched him to Celexa, I can’t say it didn’t work, however, I really thought he seemed a little better with the Lexapro. What was a disaster was when a doctor in a rehab hospital prescribed Abilify along with the Celexa. He had horrible nightmares and started to fall down. </p>

<p>Edith is OCD. To the max. I could write a book on her. She is on Sertraline 50 mg./day (I guess it is like Zoloft) and her doc prescribed because he felt it would help a little with the OCD as well as the depression. Edith was always OCD, however when you are healthy and have no kids, you can be OCD. She was able to control life. Now, however, she can’t and she is just miserable. </p>

<p>Example - just to keep it fun - recently she was in a tizzy because she got ANOTHER box of candy from her neighbor for Christmas. She and Eddie did not finish the last box she got from the neighbor for Christmas. She keeps the box in the freezer and those darn boxes are getting backed up! Too many boxes of candy in the freezer. I wish that neighbor would stop giving me a box of candy. </p>

<p>This is her idea of a problem. I have learned not to make suggestions. That’s a fool’s game. I have also learned to take an Ativan if I have to be with her for a long period of time. Otherwise MY blood pressure starts to go up.</p>

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<p>Got a phone call this afternoon from my H. He got home from work and found mom on the bathroom floor unconscious. Called 911 and she’s at the hospital. She’s been unresponsive the entire time. No broken bones, cat scan clear, spinal tap showed nothing. </p>

<p>She’s in icu. Doctors want to do MRI but waiting for her to stabilize so maybe tomorrow. After discussion with doctors, hubby, siblings, I signed a dnr. </p>

<p>One way or the other, I hope something happens soon. Mom would hate this if she was aware.</p>

<p>Sorry, I’m still in shock. Hoping for the best but then, what is that? Am I bad if I wish she would pass on? The doctors have ‘that’ look but don’t want to say anything either way.</p>

<p>Sorry for the rambling.</p>