Parents caring for the parent support thread (Part 1)

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<p>It sure is hard. That’s one reason I keep coming back to this “support group” – to get validation of what I KNOW is right, but FEELS wrong. Parenting our parents is never going to come naturally, so we have to trust what our brains tell us and go with that. Not easy, for sure. But support really, really helps, and you have mine. :)</p>

<p>Something else that helps is to remember when D was really little, and she wanted this or that thing which I knew was bad for her. I was being a good Mommy when I said No, even though she couldn’t understand and was unhappy about it. Sadly, it’s exactly the same thing with our parents sometimes. They simply are not able to make good decisions for themselves any more. It’s our job, unfortunately, to be the grownup.</p>

<p>Hugs to you.</p>

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<p>Montegut- Re: the address book-can your sister print out address labels (without phone numbers) that your mother can use to mail notes to friends? Alternatively, I would send out change of address and contact information postcards to relevant contacts on her behalf. A quick note to those closest to her could explain she has moved to access more care and would appreciate a call now and then. I make the effort to keep in touch with a few of my father’s longest standing friends and it is meaningful to all. </p>

<p>Additionally, perhaps staff would unplug/disable her phone at bedtime every night and plug it back in the morning. No one wants calls all night. Would she be able to get around that system? My guess is that there could be slip-ups with the implementation of this, but if the phone is left off the hook, you can always call the nurses’ station and ask that they check it. They might even have “rules” about night time calls and phones being off that help your mother take this less personally (were that to be an issue). In a shared room, limited late night calls is likely to be the norm. </p>

<p>As far as the hoarding/gifting goes, these people can be hard to stop, but your concern is so understandable. Don’t know how often you or another helpful family member visit, but if it is somewhat regularly, perhaps they could hold packages elsewhere until you are there to set priorities about what actually enters the room. If you were sending an important package, you could alert them as to when to expect it and have it go directly to her. </p>

<p>As to the pre-paid funeral arrangements, I found a good funeral home local to my parent’s current residence (but out of state from the burial plots), was helpful. They do these arrangements regularly and know what will work within the Medicaid regs and with the cremation decision. Calling the New Orleans cemetery where your other family members are buried will let you know what your options are from their point of view. I would start there as they may have specific requirements for the burial of the cremated remains that would impact your plans and costs with the local funeral home. In general, cremation gives you more flexibility with services and timing than you might otherwise have. </p>

<p>Ditto on your well wishes to all and best to you as you sort this out.</p>

<p>LasMa- couldn’t agree more.</p>

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<p>Are all the care givers on this thread women? What happens to parents with all sons?</p>

<p>MIL/FIL are needing more help than they are willing to ask for or even accept. All their sons live within an hour of them, but none seems to be ready to intervene. FIL was never one to put up with sons challenging him, so it’s understandable that when he says he’s ok they stand down. I’m trying to talk DH into talking his parents into having some cleaning/laundry/cooking help once or twice a week.</p>

<p>FIL has been MIL’s caregiver for the last year as she goes through cancer treatment. They don’t/won’t talk much about the treatment goals or prognosis, but she’s clearly getting weaker, and he’s getting run down. Both assumed that she would care for him in old age, not the other way around, so they are both having a hard time adjusting to the reality. Nurses come by a few times a week, but that’s about all the help they have. I used to bring food, but the refrigerator is always crammed full, so it wasn’t helping.</p>

<p>Anyway, just curious about what happens in guy families. I’m from a family of girls, and you better believe we watch out for our mom like hawks, and go into full action mode when she needs anything. Fortunately, she’s in a retirement community where help is accessible, and she isn’t shy about asking.</p>

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<p>Good question, momofjandl. Since we only have sons, I guess I’ll be able to answer that question in 30 years or so. I’m hoping that having seen what I’ve done for my mother and what their father did for his father (altho his sister was the primary caretaker), they’ll be prepared for the challenges that may await them.</p>

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<p>Sorry for your beloved loss Limabeans and to any others who have recently lost a loved one.</p>

<p>I am a son who is caring for my mom at the moment. We lost dad 3 weeks ago tomorrow. My dad was basically my mom’s caregiver after she suffered a minor stroke 12 years ago. She became both physically and emotionally dependent on him when they took her driver’s license away following her stroke. He spoiled her rotten during those years… he was her “reading glasses”, blow dryer operator, bra fastener, TV remote fixer, light switch operator, and an varied assortment of other tasks. The only thing she was NOT capable of doing herself in recent memory was driving, and now I’m trying to get her back to doing those things she is capable of doing on her own, in preparation of her moving into an independent living apartment in a senior living complex. I will continue to manage her financial affairs, pay her bills, etc. and be over to see her regularly in her pad. Her home gets listed tomorrow, after weeks of preparation.</p>

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<p>This something else the staff could help with, and you could talk with the director about. There are lots of little things they can do to help her feel more “at home” there. They can make a special point of taking your mom to the various parties, card games, exercise classes, etc. They can help facilitate friendships with other residents. Also, I know that when my dad is in skilled nursing for a spell, those are long lonely evenings for Mom. Aides will often come up to the apartment in the evening and just sit and visit with her for a little while. Maybe they could also do something like that for your mom.</p>

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<p>jshain, I’m so sorry to hear about the loss of your dad. </p>

<p>This is a tough transition for your mom, losing not only her partner but also her “doer.” Maybe the good news is that she’ll be in a safe place as she gets used to doing more for herself.</p>

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<p>jshain- Sorry for your loss. </p>

<p>Your mother is lucky to have your help moving forward with these changes. It sounds like your support has made a big difference during this transition. It is impressive to me that the house is about to go on the market and that she knows where she will be next. It can be so hard to put all the pieces in place. Best to you. </p>

<p>As to the son vs. daughter as caregiver, in my experience, it is more about temperament and, in some cases, capability, character and the nature of the relationship over time, than gender. My MIL has sons and is re-married for about 25 years after the death my FIL. Although she lives a great distance from her children (and can not move closer due to health), each son does their best to visit and look out for them. I also help out whenever possible- my ability to clothes shop for her is appreciated as none of the men her life have an affinity for that task. The sons have diverse areas of expertise and experience, so it has naturally evolved that they handle different things. In my family, I am the only caregiver out of 3 children. My sibs (S and B) live far away, but wouldn’t be in on the action even if they were nearby. I don’t believe gender is a determining factor in the situation.</p>

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<p>In my case my mother picked me as caregiver since I was a little girl. I was always told that I would have to take care of them when they were older. My brother moved across country to get away from our parents. Boys weren’t expected to do housework so I would have to be the caregiver because I was trained to take care of everything.</p>

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<p>shelfell, you may be right that your sons will learn by watching you. MIL/FIL were the ones that moved away from their parents’ state, and so were not heavily involved in caring for their own parents. DH and BILs have no memories of watching their grandparents being cared for.</p>

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<p>jshain and limabeans- I’m so sorry for your loss.</p>

<p>Well, I finally did a few things around the house for mom. Got her the Alert1 device to wear around her wrist, contracted a company to have an aid come in twice a week, and started the paperwork for aid and attendance.</p>

<p>The one battle that I’ve decided to lose is switching mom’s primary care doctor. I took mom to another doctor for a second opinion, hoping that mom would make a connection. I should’ve known that would never happen. ;)</p>

<p>I have decided any appointment she has with her primary care doctor will be with me in attendance, since my hubby is not the quickest to ask questions when the doctor decides something needs to be done (or not). He comes from a family that always believes the doctor is right and I come from the more cynical- what is the doctor not telling my family- so I question a lot.</p>

<p>Mom also kept insisting that she didn’t need a caregiver to come in. I have the person coming in twice a week- hoping for more later. Mom wanted only once a week. I’ve informed the caregiver that if mom says she doesn’t need to come so often, that she’s to ignore mom since I pay the bill. Yesterday was the first day. She seemed to like the caregiver, but only time will tell.</p>

<p>What I find very sad to see is mom losing herself. She’s more forgetful than ever, frail, and I don’t know- just old (if that makes any sense). She used to be so vibrant, always out doing things, very social. Now she’s at home and like a shell of the person she was before we took her to Hawaii. </p>

<p>My sister and I talk about that trip as if that was the last thing on her personal ‘bucket list’ and now that she’s done that, maybe she has subconsciously given up? It’s weird but we have memories of her before Hawaii and after Hawaii. Although, she keeps talking about getting her driver’s license renewed- which frightens my hubby to no end. I tell him to not worry about it- she has to pass the eye test and a recent eye exam with her optometrist tells me that she’ll never pass the DMV test. And even if she does, she’s wheelchair bound, so she can’t drive because she can’t put her wheelchair in her car by herself. So hopefully the DMV will be the bad guy.</p>

<p>I think we need to do the advanced directive- does anyone have any advice about this? I also need to get a power of attorney and an umbrella insurance policy since the caregiver will be taking her out and about when mom is in the mood.</p>

<p>Sometimes it’s so very hard to be the person who has to make the decisions but it’s nice to know that the people on this thread are here for support. Thank you for reading and all the support you have given me- it really helps.</p>

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<p>You can get advanced directives from the hospital nearest your mom’s place, as that is the one that would most likely be taking care of her if something happens.</p>

<p>You can ask wherever she has accounts for their durable power of attorney forms–it may be a different form for each bank/institution. If you use THEIR form, you are less likely to have hassles than if you use any other form.</p>

<p>Umbrella insurance policies are generally fairly inexpensive–I just ask our insurance agent who handles all our other policies to get us a quote and we pay it.</p>

<p>You’re doing a good job. Hang in there!</p>

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<p>We added my Aunt’s health care aide to her auto insurance policy, they needed a copy of her driver’s license, it did not increase the premium. In the state of CT, there are 3 different articles that are usually filed together. Article I, withholding or withdrawal of life support systems, Article II, health care representative/attorney in fact for health care decisions, Article III, appointment of conservator for person and/or estate and articles about disposition of remains and waiver and indemnification. I would suggest consulting an elder attorney.</p>

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<p>ChuckleDoodle,</p>

<p>I can relate so much to your post and the feeling that your mom is “lost” after the trip she took. For my mom, the pivotal event was surgery for a bowel obstruction 3 years ago. Prior to the surgery she was a force of nature, doling out investment advice like a pro and doing tax returns for family members. She had a large group of friends and was always traveling or planning to travel (at 84). If she hadn’t lived near excellent medical care the abdominal obstruction would have killed her, and since then she seems to feel like she is living on borrowed time. It marked the beginning of her mental and physical decline, and she now feels frail and vulnerable. I’m going up next month to help her organize documents for her tax preparer, assistance that would have been unthinkable just a few years ago. She also agreed to have a caregiver come twice a week now, another concession to her dwindling independence. Her memory is declining rapidly, and we sometimes wonder if the anesthesia or surgery somehow accelerated her mental decline. Although I feel as though I have already lost the mom I knew growing up, I realize that this is also nature’s way of allowing us to say a long goodbye. Parts of her memory are still intact, but some things are just gone. My dad literally dropped dead of a heart attack at age 59, so as difficult as it is to watch the slow decline in my mom I accept the process as part of the package of a long life.</p>

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<p>Momsquad,</p>

<p>That’s exactly the way it seems. I lost my father from rectal cancer- it was fairly quick about 4 months. While I’m not ready for my mom to pass, she’s just a shell of the person she used to be. Her memory, handwriting, everything has done a 180. Some days I wonder which way is worse…</p>

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<p>I am not even old yet, but when I had three surgeries/procedures requiring anesthesia, my memory changed. I have always had an eidetic memory, I literally could see a picture in my mind of things to recall, like where I put something or could picture the words of an email to a client. We used to joke in my office that I never print anything, I did not need to as I could recall even the details.</p>

<p>Post-op, I am still looking for a couple of items I put in a safe place that summer! The year of the surgery, I definitely had trouble remembering little things and for the few few years it has been like that. Once in a while I can access those photo memories, but usually they either are not being saved that way or are not accessible. It is incredibly frustrating both to self-image as I am the one who always recalled everything very accurately and also just day to day trying to create new habits and patterns so that I will remember where I put stuff.</p>

<p>If it is that bad for me, a middle aged healthy person, who spent about 8 hours under anesthesia, but should have healthy resiliency, I can only imagine what it might do to an older frail person.</p>

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<p>Anesthesia is scary. My grandmother was completely fine cognitively until she went under anesthesia after breaking her hip in her early 80s. She came out of surgery delusional and suffered from ever-increasing dementia from that day on. She was never able to live independently again.</p>

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<p>Anesthesia is always billed as being so very safe. Am glad to read that I am not the only one who has serious concerns about it. Whenever possible I opt for “conscious sedation” where I have only enough so I don’t feel anything. I think we would do well to look to acupuncture and hypnosis as means of minimizing pain with fewer side effects.</p>

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<p>It seems that individual sensitivity to anesthesia is quite variable and may be related also to the type of procedure/anesthesia. My cognitively intact parent was extremely vulnerable to pain medication side effects, drug interactions, confusion with systemic infections and post-operative hallucinations (seemed particularly likely with major cardiac surgery/by-pass). My parent with memory loss came out of major surgery oriented, without any cognitive setbacks.</p>

<p>The ambiguity of the aging process makes all of our efforts a moving target. It is true that some “insults” seem the start of a rapid downturn and at other times I have seen people bounce back from events that seem insurmountable and still be around 2 years later at 90. Whether they would have opted for the extra time given the struggle is hard to say and in a way, a moot point apart from how decisions are made going forward. </p>

<p>I am glad that the specialization in geriatric medicine and pharmacology seems to be more evolving and more available. I think it can make a huge difference for how procedures are done, how medications are prescribed and how confusion is addressed. There can be a role for advocacy here. I frequently found myself discussing how to minimize the effects of meds on my sensitive parent and how to reduce variables when changes were indicated. I wanted to both decrease the likelihood of confusion and glean information about how each med impacted her individually. It was usually a disaster to alter several things at once.</p>

<p>It is so helpful to hear from people on this thread as a source of information and support.
Are any of you participating in “real life” caregivers groups? I have just started to participate in one for families of elders with memory loss offered at my father’s specialized care unit. I am learning a lot from the guest speakers and other family members who have been navigating this for longer than I have. There is a also a lot of support between the members.</p>

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<p>I host two support groups at two different medical centers. More patie ts are attending with their caregivers. I think it’s great. Have a friend running an org, Caregiver Foundation of America and he runs many support groups all over the island. It is a very challenging g role</p>