Anyone else had a decline in health with caregiving?

Besides my minor stroke, I had depression for 3 years.

staceyb: Spot on accurate! Kudos to you!

Staceyb, that is so true. The elder believes the false assumption that you are so much younger than them. And also believes that you will live healthy as long as they did. I have heard stories where the caregiver dies due to neglecting themselves and the elder just moves on to the next host. It's disgusting. I know many of them can't help it because they have dementia, but that is all the more reason that we as caregivers need to make all the decisions. I have to work on this myself. The days of mom calling the shots are coming to an end.

Caring for older people is in no way the same as raising children! I'm with you guys in that I hate it when I hear people say it is anything like that!

I know this to be true, as I raised four terrific kids to adulthood and while they are doing great and thriving in their 30's, the senior parent  (my FIL, not my own, as that too would have been so much different) that I am caring for in my home, is declining on The Daily! He is a rude, demanding, and obnoxious  NARCISSIST!

Whereas we love our children unconditionally because they are an extension of ourselves, the seniors we care for to some degree, often become so demanding and overbearing, that we soon grow to resent them and the love that we might have once had for them changes or diminishes to a certain degree.

And while we are usually younger and healthy when we have our children, to then take on the task of full time care an elderly person while you yourselves are entering middle age, or  your own senior years, sucks the life out of you, and these are also the years when our own health is declining in the natural course of life, and then it compounds our own decline.  Its So not fair!

Even more resentful, is when you take care (for years on end), of a Senior parent who has never ever, even for One Day, Ever cared for their own parents, yet expect you to honor their life's every desire, until they die, leaving you No time to enjoy your own retirement

What's that all about?

OH MY GOSH!!! Jessie, your post above is the best! I am glad that you said and that I found it! What a relief to see such clarity in print.

JessieBelle: The elderly parent shouldn't, in any way, be calling the shots. Good grief!

I feel much the same way. After watching my parents grow old, I have no desire to go through the same thing -- feeling bad all the time, not being able to do for myself, not seeing or hearing. I don't long to live to 100. I have no plans to off myself, but I also have no plans to fight a terminal illness if I am old and infirm. I don't want to live that way. I know I may feel different when I get there, but knowing me, I doubt it.

Beenthere60, I didn't read Dana's comment as her wanting to end her life to spare her daughter! Not at all. What I heard her say --- which I heard probably because I've already said the same thing to my children -- is that she's planning out how her own daughter will never have to go through this. I told my children the same thing. I told them that long before my husband and I need this much care we will be living in a retirement community, one of those three level ones where you go in with independent living, then you can move to assisted living, then to nursing home care if you need it. I will never ever put them through what my parents have put me through. -- That's what I hope Dana meant.

Oh, I forgot to add that what is going on will mean there will be a greater demand for family and private caregivers, instead of a lesser demand. Maybe family caregivers need to unionize or something so they'll keep some of their rights. Family caregivers give so much, but are pretty much ignored beyond lip service.

onlyoneholly, I see a huge cloud on the horizon. Eldercare programs, including SS, Medicare, and Medicaid are all up for review by Congress. Ryan and cronies want to push back the retirement age and reduce SS payments in the future -- I think after 2030. The idea of Medicare vouchers and reduction in Medicaid is going to impact older people. With Republicans in charge of both chambers of Congress and the presidency, I guarantee we are going to see some changes fairly quickly. Obamacare is already on the chopping block. SS has already had some bill presented in the house. We are looking at a rough road for elders in the future if this keeps up. Maybe they are hoping all us older folks will jump off a cliff or something. :-(

I have been thinking about this thread for a few days. I had a little taste of what 24/7 caregiving for my mother would be like when I had to stay with her for 8 days (and nights). She became nearly helpless. She ordered me around as if were just the puppet to fulfill her OCD needs. I did get out occasionally to swim my laps and go to church. During one of those outings I bought junk food to hoard in the bedroom I was staying in. I needed that comfort food!

I was so angry by the end of that eight days that I was hardly speaking to her. (And then months later she told me that I did not stay with her that long; that it was only one or two days and that she didn't need anyone with her.) In retrospect, it was a good experience for me, because I have learned that I cannot become her personal care attendant. My health would suffer greatly.

I've read on this forum how people attribute cancer, obesity, diabetes, depression, skin ailments, high pressure to the stress of caregiving. And I fully believe it!

My mother has three darling sons, and when the time comes that I've had enough, I have told them that I am walking away. She will be their problem to deal with, even if they are states away. I have a one-story house, and she will NOT move in with me. No way, now how. 

*Jessebelle* your post was honest and it needed to be. This is an unprecedented time in human history. Most elders are living longer due to better medical programs which they aged into at the right time. We, their children have often not quite reached the Medicare benefit age. We need to work to keep paying into the system. The tasks to take care of the elder (as society seems to dictate these days) take up the entire day. We have little time and less energy for ourselves. Society also does not acknowledge us as the person with authority to manage and that needs to change -- now! Yes, we are very dis-respected by the elders. It gets chalked up to "quirks of old age." The persons who fluff it off have probably not had to deal with care for more than a year. When it gets to be several decades of caring for them then it becomes stressful -- and stress causes ailments.

More funding needs to go into regular nursing-home facilities. The waiting list is so long and the rules so stringent. I am appalled at requirements like "needs to have a stroke, or heart-attack" to get admittance without a battle with the bureaucracy. Once persons are in their 90's the nursing home beds should be readily available -- and the variable be a family petitioning to keep the elder at home. Also, I think that a re-structure of how doctors do appointments is needed. Allow a caregiver to get their medical appointment done in tandem with the elder's appointment, no matter what insurance carrier they have. Also, require more "home visit" general practitioners too, to visit the elder and caregiver for checkups. That would be a good incentive for medical student scholarships. If the student agrees to fill the "needed medical position" and do this for at least a decade then we can begin a structure of having enough doctors/nurses to do the jobs that are needed. I wish a program like this would start right now, this very year, for once have enough doctors to assist in care for persons over the age of 50.

You all have a life too, and if you've spent more than 3 years caring for the elder at home without respite, then you need to step forward and make yourselves heard to your legislators. I honor and respect you all and still living it myself so very glad for this site to share thoughts.

More people caregiving need more outside advice. This why I am taking my 10.5 years experience as my mother's primary family caregiver and using it to start a dementia care consulting business. Each of us starts this journey alone and caught up in the stress we stay alone. We don't know what help is out there (or not). We don't know how to ask for (or demand) help. We don't have any sort of plan.

Here are some things that can help:
Alzheimers Association alz.org
Your local Area Agency on Aging (might have a different name but they exist in all states)
Support groups (see above)
Don't drink the tap water without filtering it first
Organic fresh foods. If you must use packaged make sure it's organic ("natural" means nothing)
Urgent care clinics exist. They can be very helpful
Religious groups sometimes have volunteers for companionship and transportation
Meals on Wheels
Advocate, advocate, advocate. For your loved one and for yourself.

Start at the top. Good luck.

The best I can think of it is that it's programming. No matter how old we get, they are older and they are the parents.

Jessie, you are so right.  I felt at times that my parents still thought I was 30 years instead of a senior citizen.   I still remember how they reacted when for the first time I bravely said "no" to getting my parents 30 bags of mulch.   I just couldn't do it any more at my age.   Dad said that Home Depot would put the mulch in my Jeep.... then I asked Dad, "do I bring home the employee to help unload the mulch?"

Another thing, why is it that our parent(s) won't listen to us but would listen to a paid professional caregiver?   What makes it so different?   Could it be the uniform the caregiver wears that brings a sense of authority?

Sometimes when I read things I step back and look at how things are when it comes to caregiving. People are living a very long time now. They often outlive their children. Many caregiving children are now in their 60-80s themselves. Yet the parent still calls the shots and the adult children are expected to obey like they are 12 years old. What is with that?? It is actually crazy that we feel like we are lesser people and they are the boss. To be completely truthful, many elders don't have enough sense to come out of the rain. Yet we feel we still need to obey. That sounded bad, because it goes against what we are told we should believe and feel. We were raised with this programming that makes it very hard for ourselves.

Some people compare caring for elders to caring for children. It is not the same at all. My mother would be in second grade now if she were a child. Even if she had told me that she didn't want to go to school, I would say you're going. Period. But we feel like we can't take a week away from our parent because they don't want to go to respite or let someone come in the house. Is that crazy or what? It seems to me that we give all rights and respects to the oldest and expect the caregiver to give up their own. If I had talked to my mother as a child like she talks to me, she would have slapped me across the room.

People are going to have to change their thinking when it comes to caregiving. The caregiver needs to be the boss. The parent needs help, but everything cannot be on the parent's own terms. The caregiver should not have to give up their own homes, their jobs, their own families, their dignity, their money, and their hope to accommodate someone who refuses to give an inch.

I know a lot of people will argue with me about the years spent raising us and how we owe them. I somehow seriously doubt that children drain the lives of their parents the way that elders can drain their senior-citizen children. Gosh, it feels good to be honest. There has to be a better way than spending 10-20 years at this lonely and thankless task.

Yes, it is usually, but not always, the female who has to step up and be the caregiver. Did we want this "Job?" Maybe we should have put it on our resume! In 6 months' time, I had an 18-page list of things I had done for my late mother! 18 PAGES! I actually never sat down to eat a meal! I just grabbed a bite while I was running past to do yet another myriad of tasks!!!!!!!

Dear Dana,

There is a lot on your shoulder caring for your mom. It does take a toll. Us, women take on so much and we are trying to do the best we can. The last year caring for my dad I became so angry and resentful. Nothing seemed to be going right. I didn't know how to ask for help. I know finding the right balance is hard, but its a must. Try to find some time for yourself. Your health must be a priority. Sorry for this analogy, but I feel like I was a car running on empty and that didn't help my dad. He needed his daughter more than ever and she had nothing more to give.

There is one thing I remembered my Dad saying to me "Your Mom and I never expected to live this long".... they were 95 and 98.   They had no clue what I was going through being a senior myself as neither of them needed to take care of their own parents.

You sound like you are under a tremendous amount of stress, and I know you are saying it's "only partly" depression, but I urge you to find a counselor of some kind, and go to your doctor specifically to talk about how you are feeling. (Or if you don't feel like talking to your doctor about that, find a prescribing psychiatrist.) Antidepressants are nothing to be ashamed of and can really help.

As for suicide, that may seem like an option, but in reality your daughter needs to know that you'll be around to love and care about her as long as possible, more than she needs to know she won't have to take care of you. (Also, hoping for cancer to magically "take you away" ignores the many realities of living with cancer, even for a short time, and the many kinds of cancer that occur. It's not like in the movies where one day you're given a diagnosis and the next you're laying peacefully in a coffin. There's a lot in between, and more often than not, it's years or even decades, not weeks.)

As it is, I am very concerned that you have done serious planning about suicide. I hope you will call a suicide hotline or the Alzheimer's Association hotline when you're feeling this way, talk through how caregiving is making you feel, and get some perspective. They have been tremendously helpful to me and to many others here.

As for assisted living or a nursing home, yes, she might "hate" it. (As one other wise caregiver has said, she'll mostly hate it when she assumes she has alternatives.) On the other hand, she might enjoy some aspects of it. (For one thing, being cared for by people who aren't depressed and resentful, and actually enjoy doing caregiving, makes a huge difference!) Beyond that, the routines and comforts of being cared for 24/7 in her own nice little apartment might hold some appeal once she settles in. My mom hated moving to assisted living, but it was absolutely necessary due to my dad's Alzheimer's, there was no way for them to continue living "independently" (with lots of help from me), partly because of my own breast cancer diagnosis. She cried and yelled at us for days. She doesn't "love" it now, except for the food, but she and my dad are well cared for and very comfortable, and I'm so grateful for that. So I would really urge you to give some more consideration to those options, and find out what supports are available in your community for caregivers. Even a week's respite would give you some breathing room.

More importantly, you'd have a life you value, and you wouldn't have to worry about her 24/7. It can be nearby enough that you can visit her every day twice a day, and still have your life back because someone else is doing the hands-on caregiving. If your mother doesn't have her own resources (money in the bank or a big life insurance policy), you could talk to your local Area Agency on Aging and find out which places nearby offer care on Medicaid.

Bottom line, you deserve a life that you can live. No one should feel like they're spent and life isn't worth living, and if you're feeling that way, it's time to make some dramatic changes before your health makes them for you.

Dana, the only way your daughter will agree that her Grandmother needs a higher level of care is for her to take care of her Grandmother when she is home on her break.   Spring break is coming up, she needs to be home to do ALL the work involved, and you disappear for that time off even if it means checking into a hotel. Your daughter doesn't realize she is also stressing you out.

As for falling, Mom will fall no matter where she lives, that is just what elders do.   I know you enjoy talking to your daughter when she calls, cut the call short saying "it sounds like Mom has fallen again, I may need to call 911 this time".   Maybe then your daughter might get a hint, or maybe not.

Keep us up-to-date on what is happening.

Thank you all so much. Since I first posted, I've had thrush and strep throat at the same time. I finally had to go to the doctor, which I avoid because I don't have health insurance, and it took two rounds of two medications to get it all under control. Some days mom is ok, but other days, like today, she is very demanding and wants me to sit with her all the time, and she talks about the same things over and over and over again, and she cries and moans all the time. My daughter is very busy with school, and sometimes all I hear from her is quick text, but sometimes she likes to talk for an hour or so, and then it's like mom is jealous - she'll ask when I'll get off the phone.

I do need to stand up to mom and tell her that we need to use her money to get her paid caretaker to come another afternoon so that I can have at least an afternoon off a week. She is such a fall risk that she cannot be left alone - she'll promise not to get up, and usually she won't, but sometimes she does.

Yes, I am planning on suicide if I don't get cancer so that my daughter can have her life. If it's cancer, I'll move to Oregon, otherwise when the time is right, i will go to Dignitas. When caregiving is over, then the grief, and by then, there probably won't be enough of me left. This is only partly depression - the reality is that people have to go through things that we would never put our pets through. Actually, I think rational suicide as end of life management is very different from despair suicide.

I can't put her in a facility for several reasons. One, my daughter would never forgive me. She is very close to her grandmother - and when she came home for semester break, mom was on her best behavior and not as demanding as usual, didn't cry and moan all the time, so she doesn't know all of what I go through, but she did see me helping mom get dressed, giving her a bath, helping her go potty all day long, putting her to bed.

Another reason is that I live in a state with a filial responsibility law.
And another is that when she was in rehab, she fell there. She can be sweet but she is also a domineering person and she is stubborn. Even in rehab she fell because she thought that she could get up and go potty herself. She said she had to go potty and had to wait for half an hour so she had to go herself. I told her she has to go in her Depends. It's been an uphill battle to get her to pee in her Depends at night - she had been waking me up two and three times. Finally I told her if she kept on that she would wear me out, I'd collapse, and then she would be in a nursing home.

Thanks for giving me the space to vent. At least day before yesterday I did some yoga and today went for a short run. Tomorrow if mom is difficult I'll lie and tell her I have a migraine so I can get a break from her until next time she has to go potty. I've also thought of putting her in a nursing home for a week of respite care so I can have a break. Sometimes mom says she feels bad that I have to do so much for her - maybe then I can tell her that the best thing she can do for me is to go in a nursing home for a week so I can have a break. I'll admit that sometimes I resent it when she says she can never repay me, but actually she could by actually paying me to be her caregiver since I'm struggling financially, and by going to a nursing home for just one week of respite. I do think I should see an elder law attorney and get everything in place in case I go first. It will have to be set up that if I die first or become incapacitated that mom goes to a facility - otherwise my daughter would have to drop out of school for caregiving. I have a friend who years ago actually had to drop out of medical school to take care of her parents. Her mother is now in a nursing home but she still has to visit every day.

Yes my health is worse. I end up putting off my own doctor visits. Not only that, but I know of at least two people who ended up passing away only a year or so after their care giving days ended. One man developed cancer and the other had a heart attack. (And yet, my siblings think that I should not have any money? Really?)

I can only speak for myself, of course. The answer is yes, caregiving took a toll on my body because at the time, it had to be a split second decision as my late mother never advised her family of her bad decline in health , especially since she was living alone in her own home. I needed a foot surgery, for one, but couldn't get it because I had to move in with her 400 miles.

Me again. And, at first I went daily to spend time with her so she would know I hadn't just dumped her and ran (the place is about 1-1/2 miles from my house). Now I go over for short visits 2-3 times a week. She knows I love her and she is comfortable.

Dana--I'm going to speak as a daughter of a caregiver. After my Dad passed, all my mother could think about was joining him. She was depressed, talked of suicide, etc. Frankly, I was so angry I could hardly talk to her. And I finally told her. And I asked her didn't she realize when she joined him I would be all alone. And how did she think it made me feel that she would leave me alone rather than try to deal with my Dad's passing. So, reading your second post, you are planning on your own death to "spare your daughter" instead of taking care of yourself. Of course your Mom hated the NH because she knew she had another option.
Believe me I don't mean to be so mean. I was living in your exact situation with my 96 year old Aunt. She was living with me and the stress and strain of it was taking it's tole. I had gain quite a bit of weight (emotional eater), I had to increase my medication for a rapid heart beat, I had to begin taking a medication for anxiety, I now have diabetes, etc. Last fall I was sick 3 straight months and took 5 rounds of antibiotics to get rid of "a cold". Not a cold, of course, but it never progressed to full-blown flu. I ran low-grade fever, ears were stopped up, chest was stopped up, everything had color (if you know what I mean). THREE MONTHS. I went into the doctor for a full CBC work up to see what was going on and my immune system was shot. My body had nothing to fight with. My doc told me that day that I might start thinking about moving my aunt to a NH. I just didn't want to do it. She was so scared. The time or two she had been in rehab she also hated it there. The wednesday before Thanksgiving she fell. ER, hospital stay, then to rehab. I had already done some checking and found just the facility if the need arose, so I was prepared to tell them which rehab to send her to. After she got there, she got worse. When a Medicaid bed came open I agreed to transfer her over to the NH. It was one of the hardest things I have ever done. Fast forward to today and she has adjusted, she feels safe and well cared for. The first month was rocky and full of late night calls about emergencies. My point is, when she asked about coming home I told her it was up to the doctors. They would not let her come because she couldn't walk, which was essentially the truth. She has settled in. So will your Mom. Please don't martyr yourself and leave your daughter without you because you don't have the courage to stand up to your Mom. Good luck and God Bless.

You are not alone. I had to retire to take care of my husband and don't see me ever having a life of my own again. I also just put my mother in assisted living as I was could no longer care for the both of them. She has dementia, he has dementia and PK. I have been hit, kicked, punched...both shoulders are painful as well as my thumbs and back from taking care of him. I have help come in 2x a week. I never used to get sick but for the last 2 months have had bronchitis, sinus infections and general exhaustion.
You don't have to pay for your mother's care - check Medicaid laws in your State. You are lucky you have the option, you should be spending time with your daughter and living your own life. You can still be part of hers, she will get used to her new home. Do you really want to end up resenting her for taking your life?

Joannes, I hope you make a full recovery from your lungs surgery! You be sure to take plenty of time to recover, before resuming your caregiver position! It's time for a good long break from the situation with your Mom! Take care!

@Dana235. I can totally relate to what you are saying. I am going on my SIXTH year of living with Mom and caring for her. It's not her fault, just the way the cards played out in life due to her dementia and numerous health problems. I began to let myself go. Eating bad. Not exercising. Depression, etc. My neck broke out in a rash last August and it appears scarred with these dark blotches now. All due to stress. I let my tooth go thinking it was a small cavity, and just had a $2,200 root canal and crown. Since I retired at 55 to care for mom, I have no dental insurance, and knew my tooth wouldn't have gotten so bad if I just focused on myself a little. A break from mom is either going to the grocery store, walking around the block or forcing myself to the gym for an hour. So, for 2017 I'm really trying to get back into ME. While juggling mom. It is my New Year's Resolution. I'm doing better with the gym and am looking for more people to relieve me so I can take a monthly break and just go somewhere. I want you to know that it is very common for Caregivers to neglect themselves. . . . . Try to start by just walking around the block -- if you can. It also clears your mind a bit.

Dana

You have mentioned several times that you will not allow your daughter to be a caregiver for you. Then why don't you want the same for yourself? I admire what you are doing and I understand. I took care of my mom (long distance for several years) and she lived with me for 2. She now resides in a memory care facility and is receiving hospice care for bladder cancer.

I also was one of those fit people; work out fanatic, eat healthy etc. When caring for my mom, I was stressed all the time. I got shingles, had back surgery, and now have nerve damage on my left side. I was told that I wasn't healing properly due to stress. Stress and the nervous system are all related. That was a wake up call for me. We are delicate - we try to be strong, but humans are really delicate. Sometimes the ailments we get are a warning sign that we need to change our life.

I also tell my daughters that I will never do this to them. But, I came to realize that my mother's lack of planning (which I tried to get her to do for 20 years) is not my fault. You have to ask yourself, how long do you want to do this? My husband and I agreed to 2 years. My mom is 93; my mother in-law is 95. You never know how long someone will live. I never thought mom would live this long; she has outlived everyone she knows.

There are other options than a nursing home. Have you looked into assisted living facilities? There are also group homes for the elderly that could be a possibility. Call a Place for Mom - see what your options are. You may find a better solution than a nursing home.

Look at all your options, you may be surprised that they are better ones out there.