Caregiver’s health

Glopark

Has anyone placed their spouse in Memory care because of the caregiver’s mental health

Ed1937

I'm sure people have done that. It doesn't make any difference if you are mentally saturated or physically saturated. If it needs to be done, it needs to be done. I'm not sure, but I think Crushed might have done that.

Crushed

My doctor  repeatedly warned me that the stress of care taking could kill me

https://www.apa.org/topics/stress/body

According to a recent Stanford Medicine study, some 40 percent of Alzheimer's caregivers die before the patient. It isn't disease or accident that takes these caregivers, but rather the sheer physical, spiritual and emotional toll of caring for someone struggling with the Alzheimer's

  

DrinaJGB

All caregivers are at high risk of dying before the patient. I was very healthy before the start of all this, but I now have many stress-related problems. When a person is running on adrenaline for years the body takes a beating--as well as the mind. I often worry that I might pass before my DH now; something I never would have believed because he was always the sick one even before he was struck down with the brain injury which ultimately led to dementia--which in itself is soul-murdering both for the afflicted and for the spousal caregiver. It seems to be a death sentence for both involved according to the statistics.

Tony484

Crushed wrote:

According to a recent Stanford Medicine study, some 40 percent of Alzheimer's caregivers die before the patient. It isn't disease or accident that takes these caregivers, but rather the sheer physical, spiritual and emotional toll of caring for someone struggling with the Alzheimer's

If readily available to you, could you provide some basic citation info for the recent Stanford study.  Just enough to look it up. I'd like to take a look at the method and data.  Thanks.

Crushed

It appears that there are referencing issues I cant yet resolve

The original article seems to be

 

 

Caregiving strain and all-cause mortality: evidence from the REGARDS study. Perkins M, Howard VJ, Wadley VG, Crowe M, Safford MM, Haley WE, Howard G, Roth DL.J Gerontol B Psychol Sci Soc Sci. 2013 Jul;68(4):504-12

 The problem is methodological.  

If you "cherry pick"  caregivers and only include  healthy spouses of long marriages you get one answer if you take all caretakers you get a different one.  peopel may have been reanalyzing data

Still checking

Tony484

Crushed wrote:

It appears that there are referencing issues I cant yet resolve

The original article seems to be

 

 

Caregiving strain and all-cause mortality: evidence from the REGARDS study. Perkins M, Howard VJ, Wadley VG, Crowe M, Safford MM, Haley WE, Howard G, Roth DL.J Gerontol B Psychol Sci Soc Sci. 2013 Jul;68(4):504-12

 The problem is methodological.  

If you "cherry pick"  caregivers and only include  healthy spouses of long marriages you get one answer if you take all caretakers you get a different one.  peopel may have been reanalyzing data

Still checking

Thanks Crushed. I've always wondered about the population these kinds of statistics apply to. After a certain age, assuming that the increased likelihood of Alzheimer's among women to some extent balances the general longevity advantage of being female, you'd think that the expected rate would get closer to 50/50, so 40% would not be that surprising. And I'd suppose that for an older sample, you could even interpret it as suggesting that caregiving increases longevity.  I look forward to reading the paper and, hopefully, some reanalysis if it has been done. 

Paris20

I’ve heard anecdotal evidence about caregivers’ stress and death. I think it’s a subject that needs more attention. So many caregivers, who have reached more than their share of physical and emotional exhaustion, feel guilty about admitting they’re done, depleted, and depressed. Based on my experience, a study of one, I can say that caregiving almost killed me.

My husband is still at home but six months ago I was totally on my own with him. His temper was (and often still is) out of control, he started becoming incontinent, he fell often, stopped eating, cursed with every vulgar expression known to English-speakers, yet thought he was fine. I turned my one glass of wine per day to three or four. I told no one that I was over my head. I wound up in the hospital. My body finally “spoke up,” telling me I had had enough.

I now have a live-in aide and a cleaning lady. My husband was put on antidepressants and so was I. I got counseling to gain insight and support. I finally admitted I could not handle mid-stage and later dementia by myself. I am not a martyr. When my husband no longer knows who I am and exhibits other behaviors that I cannot handle, I will sadly place him in memory care.  I am exhausting the savings I put aside during 40 years of work but I understand what I have to do to maintain my own well-being as well as my husband’s.

Pathfinder52

The Gaugler research that I cite in my book, put us at 18% mortality and while stress plays a large part, age of the caregiver has to be taken into consideration -- I'm 21 years younger than my hubby who has Alzheimer's disease.

That reference is:

1. Gaugler, Joseph E., et al. "Caregivers dying before care recipients with dementia." Alzheimer's & Dementia: Translational Research & Clinical Interventions 4 (2018): 688-693.

In more recent correspondence with a researcher in the UK, I was reminded that a better focus might be on the larger percentage of caregivers who survive, and exploring exactly how they do that!

--p

June45

Pathfinder52 wrote:

The Gaugler research that I cite in my book, put us at 18% mortality and while stress plays a large part, age of the caregiver has to be taken into consideration -- I'm 21 years younger than my hubby who has Alzheimer's disease.

That reference is:

1. Gaugler, Joseph E., et al. "Caregivers dying before care recipients with dementia." Alzheimer's & Dementia: Translational Research & Clinical Interventions 4 (2018): 688-693.

In more recent correspondence with a researcher in the UK, I was reminded that a better focus might be on the larger percentage of caregivers who survive, and exploring exactly how they do that!

--p

Thanks Pathfinder. 18% mortality of caregivers sounds realistic.

June45

Crushed wrote:

My doctor  repeatedly warned me that the stress of care taking could kill me

https://www.apa.org/topics/stress/body

According to a recent Stanford Medicine study, some 40 percent of Alzheimer's caregivers die before the patient. It isn't disease or accident that takes these caregivers, but rather the sheer physical, spiritual and emotional toll of caring for someone struggling with the Alzheimer's

  

Crushed, please provide the document of this Stanford Medical study or a link to it.  Has anyone noticed that 40% of the caregivers who post on this site have died before their loved ones?

harshedbuzz

June45 wrote:

  

  Has anyone noticed that 40% of the caregivers who post on this site have died before their loved ones?

It happens frequently on the more general caregiving board. Typically, the poster is an adult child of a PWD whose other parent has died after as the result of a lengthy illness like cancer or from something like a stroke or heart attack. 

In some cases, the new caregiver knew their LO had dementia but was unaware of how impaired they were because of the amount of scaffolding the caregiving spouse provided. In other cases, the couple either didn't share or recognize the degree of impairment. This can be more of problem.

The latter happened in my family. My uncle clearly knew my aunt was having memory and executive function issues; they never had children and lived far from family so it wasn't as obvious to others as she was still in the early stages. My uncle's family has a history of longevity; he was a 30 year cancer survivor but otherwise very fit and healthy and clearly expected to outlive my aunt who had some heart and BP issues. He went to the hospital for a suspected heart attack, was diagnosed with a rare heart cancer and passed in a matter of days. Before he died, he called my younger aunt and extracted a promise that she'd look out for his wife insinuating there was "something" going on but not elaborating what. My aunt got a lot of support from family and regular visits from her sister who noted some slipping and was shocked to find her older sister sitting in a cold dark house before the year was out. 

June45

Thanks harshedbuzz for your reply. What happened to your uncle and aunt is scary. That is a scenario that we caregivers have nightmares about.   I do realize that caregivers die before their LO's as you say because of illnesses, like cancer, heart attack and yes even stress from caregiving.  It just seems to me that the 40% is very high percentage.  It would be nice if I could get a copy of the Stanford Medical study.  I have a friend I would like to share that with and I hate to pass on incorrect information.

Stuck in the middle

June45 wrote:

Thanks harshedbuzz for your reply. What happened to your uncle and aunt is scary. That is a scenario that we caregivers have nightmares about.   I do realize that caregivers die before their LO's as you say because of illnesses, like cancer, heart attack and yes even stress from caregiving.  It just seems to me that the 40% is very high percentage.  It would be nice if I could get a copy of the Stanford Medical study.  I have a friend I would like to share that with and I hate to pass on incorrect information.

Heart attacks and cancer are related to stress, so you can't really say someone who died of those diseases didn't suffer a shortened life due to stress.  The mind and body work together, and your physical health will suffer if you don't learn to cope with stress.

Almost no one lives in complete tranquility.  What distinguishes caregivers of PWDs is the unrelenting nature of the stress.  Respite is vital.  Sometimes, placement is vital, because not doing so is killing the caretaker.

Human beings need air, water, and food.  We also need sleep, exercise, and alone time.  When caretaking means any of the six are unavailable, something needs to change.

June45

Stuck, I agree with everything you said!   I can see this disease doing me in before my husband. But my question pertains to the statistic that 40% of caregivers die before the patient. I haven't been able to find the Stanford Medical study that Crushed referred to.

Ed1937

This is an interesting subject. I wonder how many postal workers die before their spouses. Or plumbers, doctors, scientists, etc.? I don't think we can ever get a solid number on how many caregivers go before their spouses, due to the job. There are just too many variables. Age differences - health - frame of mind - family support - gender - finances - just too many things.

Stuck in the middle

The significance isn't so much that we die before our spouses, it is that we are outlived by people who suffer fatal illnesses.  My wife's greatest fear is outliving me, and I am (not entirely selfishly) doing what I can to prevent that.

Take care of yourselves.

June45

Ed, you make a very good point about there being many variables as to why a caregiver would die before their spouse.  That is exactly why I would like to see how the Stanford Medical study (that Crushed referred to) came up with the statistic 40%.

June45

Crushed wrote:

According to a recent Stanford Medicine study, some 40 percent of Alzheimer's caregivers die before the patient. It isn't disease or accident that takes these caregivers, but rather the sheer physical, spiritual and emotional toll of caring for someone struggling with the Alzheimer's     

I found this website that has your above statement verbatim, but that website still doesn't give a link to the actual Stanford Medical study that has that 40% statistic.

http://www.marshallcountydaily.com/2018/01/11/alzheimers-dementia-takes-toll-on-caregivers-too/

Crushed are you "still checking"?

Addendum:  When someone quotes another source verbatim, it should be put in quotes and referenced. It doesn't have to be a formal format like we learned it school. But credit should be given for direct quotes.

Rescue mom

I found one  laugh-or-cry conclusion while looking at studies about caregiver mortality rates compared to people who do other  work. I found many references to “many well-known studies have already documented caregivers’ high mortality” in studies that looked at more narrow caregiver groups, such as caregiver health in daughters/Asians//low-income etc.

But the funny?  thing was one study in JAMA that talked about how “caregivers with resources,” including money and lots of family help onsite, are less stressed (which often leads to death) than caregivers without resources…..no kidding. Wealth and lots of help on hand make caregiving easier. Did anybody need to be told that?

Some also make the point that caregiving per se doesn’t mean higher death rates—it’s the stress from caregiving…duh….and how caregivers are often more stressed because they don’t have time or energy to fight that stress, because caregiving is a uniquely 24/7 job for many.  Really. But if you’re not an stressed caregiver, you’ll likely live longer.

Google scholar yields plenty of studies but the “scientific” ones are not easy reading. And yes, much depends on such details, which is not sexy reading for most people (kind of like polling methodology, which is why it rarely explained in MSM stories. But I digress).

Actually, I can see how studies done with wealthy caregivers, or in nations/cultures that provide more help, facilities and respite care, could show lower mortality among caregivers.

June45

Rescue mom wrote:

But the funny?  thing was one study in JAMA that talked about how “caregivers with resources,” including money and lots of family help onsite, are less stressed (which often leads to death) than caregivers without resources…..no kidding. Wealth and lots of help on hand make caregiving easier. Did anybody need to be told that?

You are so right about that! Another duh fact!  I wonder how much they spent on that study.

Pathfinder52

In some recent corresponding with researchers in Europe, they turn the Gaugler* statistic I cited earlier in this discussion on its head and remind us that 82% of caregivers survive.  

They are suggesting that it would be important to study those who do, and learn what they do in order to keep themselves alive & well through the turmoil and burden of being a caregiver.

I suspect that some of the "early death" of caregivers is also related to spouses as caregivers who are close in age to the "patient."  If I were hubby's age (now 90) I doubt if I would have survived these last 9 years since his diagnosis.

--p

*Gaugler, Joseph E., et al. "Caregivers dying before care recipients with dementia." Alzheimer's & Dementia: Translational Research & Clinical Interventions 4 (2018): 688-693.  

Late edit: Correspondence was with Gerain from the article below. . .

Gérain, P., & Zech, E. (2019). Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Frontiers in psychology, 10, 1748.