Aging Parents/Grandparents

Hi all. I'm going to try to be as concise as I can here, sorry if I start a' ramblin'.

This Mother's Day weekend, my 89-year-old granmdother (Dad's mom) was, for the 2nd or 3rd time, taken to the hospital for severe stomach pain. About a year ago, she was diagnosed with a condition where (as I understand it) the arteries of her digestive system are hardening, making it difficult for her to tollerate hard, fibrous foods. She's on a low-fiber diet that seems to do the trick, most of the time. This weekend she may have slipped or just relapsed for no particular reason, but it landed her in the ED at 11pm Saturday night. My uncle (who lives closer than my dad) took her, they were there until 5AM. Needless to say, it threw off our plans for a noon brunch at my parents' place, so we packed up the bagels and smoked fish and trucked out to her place in the late-afternoon instead.

Between the stomach condition, pacemaker/diuretic ussues, dimentia and severe hearing loss, my parents are beginning to act more like parents to her, though my grandmother still lives on her own and feels perfectly capable to remain independent (she also has become quite the meiser and will not spend money on something like a home health aide). They generally do not deal well with stress and end up treating my grandmother poorly, they also have a tendency toward indignance. She confides in our phone conversations that they are too "bossy" - which they are, but not without reason. It just pains me to hear them speak about/to her as though she were an insolent teenager.

Has anybody dealt with aging parents or grandparents? Are there books out there? I'd rather that my parents and grandmother spend the last years of her life in a more peaceful coexistence. Selfishly, I also wish I could enjoy the 8-or-so times a year I get to spend with all of them.

[DCJenn]

The dementia is the one part of the Dx that will become the tipping point. We're dealing with similar issues with both of my grandmothers- finally having had to place my 92 year old grandmother in a (A+) facility. (She refused to move to Maryland where it would actually be easier for people to see her...) She's on Aricept for the Dementia and it seems to have stabilized her somewhat.

Your grandmother shouldn't have to pay for home health care if she's a Medicare recipient. Your parents need to call the local office on aging and get information on what is available in thier area. She can also get assistance with house-cleaning, grocery shopping, etc. (however, if she's stubborn and/or realizes that she's losing her cognitive abilities, she will get really sneaky in avoiding strangers. Strangers are much more difficult than family members to accept the performances that dementia patients are able to do. They know that they're losing it but are terrified of what comes next. Invariably, they picture the nursing home where Aunt Tillie was 40 years ago. Bottom line, Miss XYZ isn't going to put up with the BS that a child would)

A great book to read is the 36-Hour Day which is a no holds barred account of what it's like to care for a person with dementia. It was required reading for everyone when my grandfather was diagnosed with Binswanger's 20 years ago (it's a condition that the ultimate end is exactly that of Alzheimer's disease.)

I have also discovered that it's a difficult position being an adult grandchild facing these situations. They're not our parents. and often our parents still think of us as children, rather than adults with helpful suggestions or experiences. I finally had to say to my dad, "Rick is a NEUROLOGIST and I WAS AN INSPECTOR for MEDICAID. LISTEN to us, please. We can help."

It's hard.

Jenn

[Sheherezade]

I have also discovered that it's a difficult position being an adult grandchild facing these situations. They're not our parents. and often our parents still think of us as children, rahter than adults with helpful suggestions or experiences. I finally had to say to my dad, "Rick is a NEUROLOGIST and I WAS AN INSPECTOR for MEDICAID. LISTEN to us, please. We can help."

Absolutely. I've learned this lesson as well. I have had to let go of a lot of my issues with my own grandmother because, frankly, I have no say. It's torture sometimes. It became even more obvious when my grandmother stopped recognizing me, but still recognized her kids. I'm one step removed....and that leaves you out in the cold sometimes. If you can, work to be included in the decisions your parents make and work to get your name on "call" lists with her caregivers. I think the more people that care about an aging relative the better - but often grandkids and extended family get lost in the shuffle. You can't help if you aren't in the loop. Good luck.

(BTW, Jenn's a genius on this topic. Trust her. )

[Meenah]

(BTW, Jenn's a genius on this topic. Trust her. )

DITTO!

[samssugarmomma]

I have no advice - but we are in the middle of this too. My mom took care of her mom while I was in college. We lost her mom last year after Nat was born. My dad is now taking care of his mom. I say 'my mom' and 'my dad' because even though they are still married, for some reason they aren't working as a team - my dad wouldn't/couldn't/wasn't allowed to make decisions for my mom's mom and my mom is the same with with my dad's mom. If that makes sense......
I agree that often the grandkids thoughts get pushed aside.....maybe this will change when we move closer....

I've thought of about a million responses to this but haven't had time to sit down and type them out. Balancing and respecting someone's need for independence with their safety is challenging.

First, I completely agree with Angie about a grandchild's "place" in things. I suppose that if all the grandkids were involved in decision-making, there would be too many cooks in the kitchen -- already are -- but it feels odd to be a bystander at times. My grandfather can't recognize my kids, and I'm sure that his grandkids will be next, and then his children.

We've had similar advice issues to what Jenn mentioned. Before the derm thing started, DH did most of his research work in geriatrics before and during medical school and worked with a preceptor in geriatrics for all 4 years of med school. Um, hullllloooo.....

Both of my grandfathers have Alzheimers. My dad's parents just moved into an indepedent living facility that provides care up to memory care. My grandmother isn't ready to let my grandfather go to the adult daycare setting yet but at least they are there.

My mom's parents still live at home with my 90 yo grandmother caring for my 92 yo grandfather and steadfastly declining help. It is a disaster in the making.

re: Medicare and home health. In my experience, the Medicare recipient has to be homebound as defined by Medicare. It means that she basically can't be able to leave her house except for doctor appts and church (I think). Anyway, my MIL didn't qualify and we pay out of pocket for home health and it is expensive.

Another thing to look into is Meals on Wheels. Your grandma might benefit from that.

We have had all sorts of experience with caring for parents in the last year and half and, get out your little violin, it has been really hard. I think that had we not worked out some things earlier in our marriage and if DH was doing anything more time consuming that derm residency, we would be sunk.

A year and half ago, my FIL was diagnosed with terminal lung cancer. Because of issues with my MIL, DH was the primary decision maker for his end of life care. My MIL is disabled (more on that later) and unable to handle any financial/legal/real estate issues. Because my FIL had been sick and not particularly good at those things, their bills and finances were an absolute mess. After one visit to him, I came home with a suitcase full of papers and bills and stuff to sort through and figure out. There were lots of medical bill issues, insurance issues, overdrafted bank accounts, unpaid automatic withdrawals for health and life insurance, unpaid credit cards, issues to resolve with MIL's disability insurance provider, etc. It was a mess.

He passed away, we got things mostly in order, and tried at the same time to get my MIL into a house and taken care of. (They had moved from Colorado to Wisconsin and were renting with the plan to build a house. We nixed that and found a *finished* home to buy). She has Posterior Cortical Atrophy, a visual variant of Alzheimers. The best way to explain it is that she has something like early onset AD (she is 59 years old) with a visual processing component. In addition to the memory and skill loss of AD, she has increasing difficulty processing visual and spatial information. She hasn't been able to read for about 2 or 3 years, can't see pill bottles, prepare much food, count/identify money, etc. She has also "disagreed" with her diagnosis which has added some difficulty in caring for her.

DH is her legal guardian of her estate -- her property and finances -- but not of her person (can't decide where she lives or make medical decisions for her). That is about to change. We are starting the full guardianship process. She has declined a lot in the past year and it isn't safe for her to live alone anymore. Each time with a fight, we have added some help here and there for her at home. After a month or two, she usually accepts it sometimes even *gasp* likes it. A little over a week ago, she fell down her stairs and fractured her vertebrae, cracked 5 ribs, and punctured both lungs. We have second guessed not moving her out of her house sooner but she refused and it would have become a legal battle. After the last incident in January, her doctor changed her medications and we got her a computerized dispenser -- that really helped and would have made it hard to make a case for her having to move.

The only good thing of this is that she realizes she needs a different living situation and can make some of that decision herself. She will probably be released from the hospital in the next few days to a rehab or skilled nursing facility. After a few months there, we will move her to a nursing home close to us. At least that is the plan for now.

This has been a surreal experience. I never thought I would learn as much as I have about disability insurance, Social Security and Medicare, and various other legal issues. I never thought we would be taking care of my in-laws and certainly not at this age -- theirs or ours. (I thought it would be SIL but for reasons I won't get into, that is not an option). It is hard for us to understand how this is happening at such a young age for her and even harder for her friends and family. I think it scares them to see a peer or sibling in such bad shape.

This is also a strange thing that I have this in common with my parents. They say they don't want to be a burden to us and want these decisions to be easy for us (with them) but no one likes to give up their independence. Hopefully they will remember saying that.

Thank you all so much for your responses. I think I'm going to get a book or two and come up with a plan for discussing things with my folks. I'll start with the 36-hour day and let you all know if I find any other good ones. A lot of the not-having-any-say really resonates with me. I'm still a "kid" in their eyes, plus, I'm the only one of the grandkids that lives outside NYC - 2 hours away, no less. I don't see her as often and I know that the impression is that I'm not getting a fair representation of how difficult it can be to "deal" with her.

Jenn, thanks so much for the advice. My mom went through aging issues due to renal failure with her father about 8 years ago, but it wasn't nearly as stressful, I think because he ultimately agreed with their plans for him, even if he was initially resistant. We got him to stop driving (he had one glass eye to begin with) and had the knobs of his stove removed after a small fire. She found an agency that sent a social worker (who my grandfather insisted on calling "the consultant"). My grandmother told my parents "when my time comes" they could find her a nursing home. Her self-worth has plummeted since she became a widow. They were able to convince her to have a cleaning lady in every other week because she physically can't really clean, but I know my grandfather (her husband) felt bad for not having left the grandkids money and I think she's being cheap out of a sense of obligation to leave money behind. A no-cost option would be just the thing, but I don't know if she's a medicaid recipient, and she isn't completely incapacitated. My parents were really proactive with my mom's dad, and I feel like they're just being reactive with my dad's mom.

I think a formal Dx of dimentia would actually help. As far as I know, that hasn't even been a topic of conversation because my grandmother keeps saying "At least still have all my marbles."

nmh - the falls are the worst. My grandmother has taken a few spills and broken her wrist and a few ribs. Fortunately, she has great bones but we suspect there are falls we don't hear about because they don't (in her eyes) necessitate a trip to the ED. It sounds like your plate has been plenty full. I'm thankful that my parents have long term care insurance, living wills, advance directives and the like. If there's one thing this process teaches you, it's to plan ahead as much as possible.

It's hard.

Amen.

[Rapunzel]

I don't have any solutions to the problem dayisme is facing. But, this thread brought back so many memories, emotions, and opinions:

My maternal grandmother was diagnosed with breast cancer while I was a teenager. After years of remission (and a double mastectomy) the cancer came back - mestasticizing into her bones. We watched her die a slow, painful death (my mother feels very guilty to this day for not being more aggressive with the medical staff about my grandmother's pain management). Towards the end dementia was an issue - although she had her lucid moments.

My mother's siblings insisted their mother be placed in a nursing home environment to die in the company of strangers. My mother, a registered nurse, researched and found that the appropriate care for my grandmother could be had while she lived in the home of my loving parents (my father adored his mil).

It was so hard. It was hard on us (the grandkids) but it was hardest on my mother as she watched the woman who she had always relied on gradually waste away. But, she approached it with a selfless love and likened her situation to when her own mother took care of her when she was helpless. She would say, "My mother didn't send me away when I was a helpless baby and I won't do it to her when she is helpless herself." In many ways it was the most accurate analogy: As my grandmother died over those long months she became more and more infantile - unable to clean herself, feed herself, even move on her own at the end.

My parents have never regretted their decision to love and care for my grandmother - even as my mother's siblings stopped speaking to her because of her care for my grandmother. My only regret is that I would occasionally behave like a selfish brat resenting the disruption to my teenage existance. I will always feel guilty for not always appreciating what were my last few months with this precious woman who helped raise me.

I have vowed that I will do for my parents what they have done for me since my birth: I will not desert them in their time of need, when they are helpless and frail. In many situations medical personnel must be called in to assist (such as nurses and aides) and there are times when hospitalization is the only viable option (for pain control or treatment to improve the quality of life until death). I am a big fan of appropriate hospice care.

But, I expect that sometime in my 50s (when my parents are in their 70s) I'll take on the role of "parent" to them should they need it. I think it is a natural part of being in a loving, functional family. I cringe at the people who make this choice and then abuse their parents (physical abuse and emotional abuse - with open resentment counting as emotional abuse). In those situations there is no doubt that the parent's needs would be better served in an instutional environment. I am horrified at the way our nation treats its elderly - and it's not the government's fault we're in this state - it's the fault of all the children of these elderly who abandon them in their frail old age or resent their aging parents' normal need for help and compassion. The blame for this predicament rests squarely on those who have abdicated their family responsibilites.

Now, the one exception I would make to children taking on the responsibility of caring for their aging parents: Those adult children who are estranged from their parents due to abuse should not have to face the possibility of further abuse. For instance, my father was horribly abused by his mother growing up. Despite this, he continued to love her, or rather, loved what she could have been, while an adult. But, he recognized his emotional health was at risk if he had her in his home as she became unable to care for herself. In that instance my parents found a nursing home very close to their house and he visited her when he was emotionally prepared for meeting his past abuser (generally a couple of times a month - which was quite often given her actions towards him as a child). One of the many reasons I admire my father is that he rose above an awful childhood situation so beautifully that he would take care of his own abuser in her time of need. Granted, he still had to do what he could to protect himself and his family from the vestiges of this abusive relationship, but he managed to do more than I fear I might have done.

Anyway, this issue is about as important, and emotionally charged as the issue of leaving a child to the care of others during most of the day vs. being in the care of his/her mother. In fact, I think trends in both issues are related....

[Rapunzel]

When you have a child your life is subsumed by the care for and love of that child (or children in my case). It does change your life - emotionally, physically, financially, socially.

Why resent doing for your parents what they did for you? Their lives revolved around the needs of their children. Many loving parents alter their careers for their childrens' sake. Many, many parents make enormous sacrifices (such as not traveling) in order to take care of children with special needs. (Heck, my parents never traveled when I was a kid and we were all perfectly healthy ).

Why are parents' needs any different? If my parents would do all of that for me why would I not do that for them?

With my father's health problems I've come to realize I may be taking care of him for many years. And, I've decided to look forward to the opportunity to serve this wonderful man in this way. I'm so glad he didn't resent having my very presence cause him a great deal of strain phyically and financially - otherwise I would have been placed in an institution I suppose.

[DCJenn]

Jenn,

Please stop making assumptions based on your personal world view. Really.

First, dementia is a very difficult area to manage in a home. People with dementia can become violent and dangerous. The last thing anyone wants is to hurt or be hurt by a parent who has no idea where they are. Also, often moving a parent/grandparent can seriously impact the level of cognition. As with any life-changing event, (falls, surgeries, moving, etc) the impact often is at the minimum a short-term increase in the memory loss and confusion.

I've had clients think they were in Baltimore (they weren't), that it was a different year, that they had to get home because they were going to get into trouble with a long dead parent, etc. You can get alarm systems and monitors for adults with dementia along with using many of the same safety systems that we use for children (burner knob covers, for example) but sometimes it is not possible to keep people safe.

Do I want my parents ever to go to a nursing home? Of course not. My grandmothers? Nope. But given the mental health needs and respecting my grandmother's decision to stay in her hometown of 90 years- she's in a great assisted living facility. It's certainly nicer than the apartment she'd been renting for the previous 20 years. and it's significantly safer, too.

I have every intention of taking care of my parents, however THEY chose to live out their last years. In my head, they'll come live with us. They fully intend to be carried of out of their home in respective pine boxes. The reality will no doubt be somewhere in the middle.

As a caregiver, people need to know what they are capable of dealing with. Caring for aging people is similar in tasks to caring for small children. But unless you've ever changed an adult's diaper (and my mother has made it VERY clear that she doesn't want us anywhere near should that be necessary for either her or my father) you have no idea how heavy and difficult it can be. If you don't know how to restrain someone who gets violent without hurting them or yourself, if you have no idea what to do with a person having seizures, if you can't afford live-in or drop-in help, if you live in a part of the country that has minimal medical care, if you can't get transportation assistance, if your pharmacy charges extra for bubble packed medications, etc., etc., etc. all add up to overwhelm even the best intentioned person.

Caring for an adult with degenerative disease is tough under the absolute best of situations (i.e. Nancy Reagan, Dana Reeve, etc). Add lack of money, support, knowledge or the inner reserve it requires?

We cannot and should not judge. We can and should ensure that the facilities we do have are absolutely top-notch, despite funding sources.

Jenn

I'm sorry to hear about your grandmother, dayisme. We went through a similar situation with my grandmother and great-grandmother...there are just no easy choices.

Thanks jloreine.

I may have actually painted too dire a picture. My grandmother is beginning a severe decline, we all know it isn't going to get better. My parents’ frustration is from wanting, but not being able, to provide the care she needs, not resentment for feeling obligated to do it.

My grandma's accustomed to living in the city where she can walk (allbeit unsteadily) or take the bus to wherever she needs to be - she never had a driver's license. At my parents’ suburban house, she'd be trapped and no doubt decline faster. As much as I'm SURE my father would like her to be in his care 24-7, he knows it isn't in her best interest. Fortunately, his brother is retired and a 10-minute drive from my grandmother. I don’t think the expectation exists on either side for one of her children to take complete charge of her care. I would never make them feel guilty for choosing not to. It’s a wonderful thing to do if feasible, but elder care exists because it often isn’t. Our family just isn't really into martyrdom, we love each other too much and are way too rational.

[mommax3]

This is such a hard, hard thing to deal with.

My grandmother has lived with my mother since I graduated from high school *20* years ago. My grandfather died (after suffering through the decline of Alzheimer's) when I was a senior in high school and my grandmother didn't feel like she could live on her own for financial and other reasons. She has five children, but my mother was the only one who was single, so without much discussion (typical of that family) grandma moved in. She was 74 and pretty feisty......actually, she still is. She was a big help to my mom at first, cooking etc. My youngest sister (now deceased) was severely handicapped and before her death had reached the point where she only could consume gelatinized liquid nourishment because of her tendency to have seizures and aspirate whatever was in her mouth. My grandma was invaluable to my mom at that point because she fixed all of the gelatinized stuff for Jill so that my mom (who was working full time, going to school most every summer, and was trying to keep up with three other daughters) didn't completely lose her mind. However, the dynamics of adding another strong personality to a household that already contained several of them was not addressed ahead of time, and certainly not addressed later.

After my sister died, which coincided with another sister's high school graduation, my mom basically traded one caregiving role for another. It is painful to watch my grandmother berate my mother as though she is a child and also painful to watch my mom get impatient with my grandmother for something small due to the resentments she has built up over the years. My sisters and I also have our own share of resentment towards my grandmother because we all feel (to differing extents) that she has stolen our "only" remaining parent from us.......my Dad has not ever been what you would call reliable or nurturing. My sisters and I struggle not to let our resentment overcome the positives of our relationship with grandma. She has really, really failed physically in the past year, but not much mentally at all. My mother (like Alison's) basically does not want to leave her, so even though I have moved "home", I have very little in the way of family support. My mom never had a warm, close relationship with her mother growing up, and I think in some weird way, she is hoping to be the "favorite" at this point in their relationship, so she is very devoted.

I have also watched my MIL go through this with both her mother and MIL who are both still living. Her MIL (and FIL, now deceased) planned well and could afford a graduated assisted living place, which has been great. Her mother and father, on the other hand, expected their kids to take care of them and it has been really ####### all involved. The thing I noticed with both my mom and MIL is that a lot of the eldercare issues were at their peak when they had teenagers (DH's and my younger siblings) that needed attention. Both my mother and MIL have missed time with grandchildren due to issues with their parents and have bitterly resented it......and to be honest, so have I! MIL did not meet my oldest for his first two weeks of life, even though he was born in the town where she lived, and we lived only an hour away, because she was dealing with some (non-life threatening) issues with her parents who were 12 hours away in KS. I had been counting on her to help me through the first days of nursing, since she was an old pro, but she wasn't around. She missed out on the first days with her first grandchild, and when she finally saw him, she cried and cried. She has mentioned several times over the years how much she hated missing those days.

DH and I have made the decision that we will NOT be bringing any parental units into our home. Our responsibility is to each other first, and then to our children, and until they are raised, neither he nor I feel equipped to deal with the challenges of caring for our parents. I have spent a fair amount of time around elderly family members since becoming a parent and I have observed that you can take care of small children OR deal with an elderly person.......you can't do both well. I do not intend to parent my parents unless they are incapacitated in some way......telling another perfectly capable adult what to do is patronizing at best and encourages laziness and dependence at worst. We will help them financially if they need it, but we are also beginning to have some (gulp) hard conversations with our parents about their expectations as they age and the financial resources they expect to have at that time. DH's parents have planned well......the harder conversations have been with my mom and lately, my dad, who is 74 and recently divorced after 28 years. Even having those conversations with them distracts me enough that I am not "all there" with my kids while I process the information. I can't imagine what it would be to have them living in my house!

I remember my grandmother, mother, and aunts & uncles reading "The 36 Hour Day" after my grandfather was diagnosed with Alzheimer's. It is a classic.

Everything I have read about this issue talks about having the hard conversations BEFORE the information is needed. It is good advice, but not always easy (or comfortable) to follow.

Good luck!

Sally

[PrincessFiona]

Dana,

We went through dementia and cancer of the labia with my grandmother. My mom did everything to keep her at home as long as possible...then tried a nursing home (disaster) and then brought her back home and hired someone to help with her care. This eventually pushed the envelope of my parent's marriage (it is extraordinarily stressful dealing with dementia in the elderly and all of the multiple medical problems that go along with it) and resulted in divorce....even though they were both on the same page about bringing her home and caring for her there. The reality of caring for her with so many problems and the emotional stress was more than they could have imagined. They raised their children and then had an aging parent in the house that couldn't find the bathroom, would forget how to drink from a cup etc...they had to hire very, very expensive babysitters just to go to the grocery store together. My grandmother also became very critical and would pick at my dad and mom endlessly...she made comments about my mom's weight, etc etc....and also she repeated the same story non-stop....

She died at home peacefully several years after my parents divorced and my mom still is glad she had her at home...but....it did destroy her marriage and caused her significant financial difficulties. My grandmother's medications cost as much as her social security check each month....as a result, my mom had to pay out of her own pocket (post-divorce) for her care, food, etc. It got very expensive and after my grandmother died, my mom had to file for a reorganization of debt bankruptcy...which was a super low point in her life. Because of the financial stress, my mom (age 62) continues to work full-time and imagined that she'll have to work until she is 71 in order to retire.

We all plan financially for raising our kids/college etc....but we also have to plan for our own retirements...having to pay for such expensive care out of her own pocket for so long completely depleted my mom's financial reserves and then some....she has almost nothing in retirement.

kris

Dana,

I have thought of a few things over the last day or two that helped my parents with caring for my grandparents.

For my dad's parents, using a geriatrician as the primary care doctor has been a huge help. They are accustomed to patients with dementia issues and, IMO, may have more insight and suggestions for your family. Also, in my grandfather's case, I feel they have been helpful in balancing quality of life issues with potential interventions.

It has been frustrating to feel that my mom or dad does not hear my concerns about their parents. Having the experience that we have with my MIL, I can better understand the hard position they are in. You can't make someone do something even if you feel it is for their own good (short of proving them mentally incapable).

And...Medicare. If you grandma will go along with it and hasn't done so already, I would suggest having one of her kids call Medicare with her and have them noted as someone she allows to discuss her claims. You can do this with a Power of Attorney but in my experience, it is a huge PITA. We had to fax my FIL's POA three times and by the third time when it got the right place, he had already passed away. For that reason, they wouldn't accept it and would only take the court document appointing DH as the representative of his estate -- which we didn't have yet. Much easier to sit on hold for 30 minutes and do it by phone.