Find Senior Care (City or Zip)
Join Now Log In
B
bast1965 Asked July 2015

Has anyone here ended up with permanent disability/illness as a result of being forced to care for elderly parents?

Certainly happened to me - because I neglected my own medical check-ups - my neurofibromatosis tumours in my spine have become inoperable and I am permanently on a walking frame - and I am only fifty.

The saddest story I have heard was on talkback radio one night a few years ago - a 77 year old daughter was FORCED to be sole carer to her 97 year old mother with severe dementia. Because the selfish mother wanted help from no one but the daughter, the daughter was legally compelled to care for her mother - in spite of the fact she was disabled - and elderly - herself. The time came when the 77 year old daughter needed life-saving surgery - but she was not allowed to have the surgery as it would have meant her mother would have died because of being unable to look after herself - and unwilling to accept outside help.

I personally know a lady somewhere between 60 and 70 about ten or so years ago who was forced to be sole carer to a very elderly mother who very selfishly refused outside help - so this poor daughter was forced, for ten years, to be sole carer to her severely demented mother who was also extremely violent. Finally, the mother died and the daughter finally had her freedom to have her own life and start seeking employment. She got voluntary work. But alas, she got breast cancer and died. The breast cancer was caused by all those ten years of stress.

BTW, I suffered intense stress and abuse from 2002 to late 2014 --- first abuse from my late father who got severe dementia --- and then my mother who got severe dementia after dad died --- my doctors blame that for my now severe neurofibromatosis and eczema.

steins Jul 2015
Personally, I would never want my adult kids to be caretaker for me. For a elderly person to say she only wants her "child" caring for her is extremely selfish. If you truly love your daughter or son.....you would not want them missing out on their own life and time. I relate to this because I am 70 and my Mother is 96. After many battles and shouting matches....she finally is lightening up on me. It has not been easy. My heart goes out to seniors who have a parent living too long if that parent cannot be independent and be able to entertain themselves . It is NOT a blessing and I resent that comment from people who think it is without knowing.

KalaFW Jul 2015
Steins: you wrote: "My heart goes out to seniors who have a parent living too long if that parent cannot be independent and be able to entertain themselves . It is NOT a blessing and I resent that comment from people who think it is without knowing".....I agree with you 100%. Others may have a support network or have a patient who is easy going and easy to care for. Some of us may have a 90 yr old parent who has zero short term memory, psychopathic behavior and sexual deviant before the disease. Two broken/healed hips, COPD, arthritis, only meets 1 single ADL (adult daily living) item that he can kind of feed himself. Bedridden. Incontinent. VERY verbal. LOUD. Removes the diaper and smears feces all over himself and the bed linens and walls numerous times a day. Peripheral neuropathy both feet. Bed sores. Infections. Black lung. Screams all night 'help me!' only to find he wants company and someone to listen to him talk. Disruptive. Combative. Demanding. You understand, most of us do. Others may disagree and cast fault because their care-giving may be simple and easy and a very compliant patient. Others may only have had to care for someone for a short time period. Some of us do this for 20 years straight. I would give about anything to switch roles and let them take over for one full month, then tell me that this is a blessing they have lived this long and we should be grateful. I don't consider it a 'blessing' for a body to remain alive with zero concept of time, abstract thinking, knowing who anyone is, completely dependent on others, wracked with pain, staring at the ceiling, inability to look at anyone when speaking, repetitious words or questions 40 times an hour...FOR HOURS...for every single facet of their care. I do understand and almost every one else here does. And for those who don't, perhaps a bit of compassion or empathy?

ADVERTISEMENT


MaggieMarshall Jul 2015
Where are these poor people living? Surely not in the United States, as slavery was outlawed here over a hundred years ago. NO ONE is forced to care for ANYONE in this country.

A distorted sense of responsibility and other factors too numerous to name cause some people to destroy their own lives in their service to others. Heck, I've even read on this site of people taking their CHILDREN along on their journey to helplessness as they give up their entire lives to care for someone else.

I am so sorry this happened to you. I neglected my own health caring for my husband for 14 months until he passed. It is sooo easy to get caught in that trap. And A TRAP is exactly what it is.

speak1104 Jul 2015
I 100% believe the stress from caregiving causes a host of illnesses. I am the sole caregiver for my mil. We call her Satan. She is able to due things (albeit, there are somethings she cannot) but she refuses. She is 78 but you would think she was 100. She is diabetic and has neuropathy but has been told for YEARS that moving more will help with the neuropathy but she will not. She does not have dementia or Alzheimers. In fact, her mind is quite good, she has been tested 3 times. Her problem is, is that she is a narcissist. BIG TIME. I refuse to do the things for her that I know she is perfectly capable of doing. And this is not just me thinking she can do things, this is from her own doctor. And my health has went downhill because of her. Stress can do a huge amount of damage to a person. So if you can find away to destress, by all means DO IT! If you cant, things only get worse.

DaughteronDuty Jul 2015
A brief spell of caregiving (six months or so) in which the carer knows there's an end to the experience is actually extremely developmental for the caregiver, and I personally recommend it to everyone as it helps to ground people in the realities of life. However, continual caregiving without no light at the end of the tunnel is damaging both physically and emotionally as other contributors have said. In my case, the stress of a mum who's 89 almost, immobile and with dementia, results in my inability to reach a healthy weight purely and simply because I can't get enough sleep. Lack of sleep is a cause of weight gain and as I have to turn my mum over at 1.00 am every night without fail for fear of a recurrence of a nasty bed sore that she had before we managed to get an air bed for her, I never get more than 6 hours sleep a night. There's no way around this as the carers who put her to bed do this at 9.00 pm and don't return to get her up and out of the bed until 9.30 am - meaning that she can't lie in the same position for 12.5 hours. And there's no way myself or hubby would want a carer coming into our house in the middle of the night to do that job for obvious reasons (having to keep the locks off the doors, changes in staff, etc.). No matter what I do diet-wise, and I do eat healthily and in small portions, my chronic lack of sleep means that I can't get to the weight I want, which is what I was before mum started living with me. Not being a healthy weight brings all the other problems - stress on the joints, heart, etc., not to mention increased risk of breast cancer which others have noted. So, my advice to all caregivers is to ensure that you take as much help from others as possible and only do the things that you really can't get others to do - certainly, if I were in my 70s and looking after a 95+ year old, there's no way I would be silly enough to allow myself to be bullied because the chances of reaching 95 myself would be very slim.

ohdear Jul 2015
I am on the other end. I take care of the elders placed in long term care. I am baffled by those of you who take on the role of caregivers at home to your loved ones at the expense of your own health and welfare.
In a facility you can come and visit and the visiting hours are very liberal. If medically approved your loved one can go home for an overnight visit and can leave on approval for just the day. I hear adult children say how your parents took care of you, and now it is your turn. I do not feel the comparison is equal. Children grow and mature into self sufficient human beings. This process starts early on. You will not have to change your child's diapers forever. Nor will you have to keep feeding and dressing them . I am talking about those children with patterns of normal growth and development.
Older people with diagnosis of dementia and Alzheimers with time only continue to decline and present even more health and behavioral problems. In a facility a team of healthcare providers are utilized . At home it is just you.
I love what I do but it is doable because my shecdule consists of a shift and days off that give me a good life balance. Those of you who are the primary caretakers at home may not have this kind of flexibility. Please reweigh your options. You deserve a life too.




.

Katie22 Jul 2015
I did develop a back problem and sciatica 13 years ago, which occassionally flares up from trying to catch my Mom as she was starting to fall. .My husband's A-fib returned last spring after several years and I have to wonder if the stress of my Mom's problems didn't cause that.....Now she is completely bedridden in my home and this all started with a fall in her home last year...then multiple health problems sprang up and she just could not walk anymore and was diagnosed with CHF and she developed a pressure wound by her tailbone in a 5 star rated nursing home where she first went for rehab after the fall. The cancer which was inoperable was radiated but is still there and unbelievably they gave her 6 months to live 13 years ago.....
Twice now in the past year I have had episodes of my hair starting to fall out. It got better after she went into a hospital for 6 weeks of IV treatment for an infection, but she is now home after another hospitalization and rehab in a better nursing home but she is now on hospice....and my hair has started falling out again. I know that is no big deal compared to other people's problems, but could be an indicator of my health in general and worse things to come. I keep telling myself that this will one day end and my poor Mom will find peace and be safe from this World's problems in Heaven. I don't want to lose my Mom and wish she could be the way she was before all this happened, but that is not possible. I try to get through it by taking it one day at a time and fending off each day's problems as best as possible. I keep her clean and comfortable and that is all I can do. The hair loss is definitely from worry and maybe my diet needs to be better.

notrydoyoda Jul 2015
Fancy404,

I read from your profile that you're in your 40ties and your mother has general age related issues, plus you have your own business. If you were born when she was in her 20ties, then she's not all that old.

Save yourself from someone who will never change into the loving parent that they never were, plus thinking that you will be the exception to this by sacrificing enough.

Either leave with what you have of your life, get her out of your house so that you can leave or if you are too emotionally enslaved by her blackmail then stay, but whichever, it's your choice. I'm an only child and I understand that dynamic makes it worse and being a God fearing person can easily be manipulated by a narcissistic parent into making us feel we are not honoring our parent by moving on with our own life in response to their emotional abuse.

Doing so is not dishonoring a parent, It is honoring yourself as a separate human being who is just as valuable in the eyes of God as she is and does not find her abusive behavior of you pleasing at all.

Get yourself a therapist, dam the torpedoes of fear, obligation and guilt which are the tools of emotional blackmail which some like to call F.O.G. and take no prisoners while you escape from hell. Make it so. Or the emotional womb that you are in will become your tomb!

Globetrotter50 Jul 2015
It's interesting that several of you have mentioned weight gain from lack of sleep. I have not put on too much weight but more than I would like, and feel so bloated and sluggish most of the time. My fatigue level is relatively high, and I noticed that my blood pressure, which was in the low normal range, has slightly climbed, although I attributed these to factors to post menopause.

My tennitis (especially pulsile tennitis), dizziness, balance and motor coordination problems are acting up. My fatigue level makes me more prone to accidents and falls (especially in the winter), and I when I do yoga I am chronically stiff, I can't develop the flexibility any more. I, too, have noticed more hair coming out when I shampoo, although not to the point where my hair looks thinner yet. I become short of breath and tired out easily when I do physical exertion, although I walk 20 minutes 6 times a day and stand for three hours a day as a crossing guard during the school year, which presents its own set of health problems from air and noise pollution.

I find my skin is a tell tale sign of the stress, not in the form of eczema but cherry what-ever-you-call-its springing up, some very large, all over my body. I started to get them when I was in my twenties, so I get annoyed when doctors say it's age related, as well as pigmentation growths.

Sometimes odd things will pop up and go away, such as when I sprained my back reaching down to turn off the power bar of my computer. Although it was only muscle sprain that took a few weeks to heal, there was traces of blood in the urine; however, when I followed up a month or so later, that symptom had cleared.

I've been blessed with an overall healthy constitution, but if that's the case, I should feel a lot healthier than I do. Of course, there are the emotional illnesses that commonly come with caregiving, like depression and anxiety and trouble with anger and emotional self regulation. I get very irritable quickly now; I used to have a patient, pleasant disposition. I feel that I've lost my empathy - I guess that's burnout, because mom is not open to day programs, respite relief, going out for walks or doing anything to make herself feel better. The repetition of stories from her past and how badly her life has turned out, obsessive compulsive behaviours and constant repetitive questioning are really stressing me out now. Her short term memory is shot, and she is combining several past events into one now. Her g.p. says she could go on this way for seven years, but I highly doubt it; then, again, she's so stubborn she probably will. But she just seems too weak and giving up the will to live.

Sorry for rambling, but short answer, yes, I notice physical and psychological ill effects from long term caregiving, even in just a supervisory role without nursing duties attached.

GGsGirl Jul 2015
Yes, stress from caregiving has fueled my arthritis. I was fully capable of taking care of my elderly mother (now 88, short term memory loss and other illnesses, but functional & mobil with a walker) when she moved in with me two years ago. My RA (diagnosed 25 years ago) was in remission, and I was easy going and optimistic. Now I am in pain from two shot knees & bad hip - OA + RA - and have gone from using a cane this past winter to needing a walker in a very short time. My personality has changed for the worse. I miss my old self.

I don't think we caregivers intend to put our needs last - it just happens. Things come up unexpectedly that require immediate attention (eg.: uncontrolled nosebleed with trip to ER) that disrupt your plans. And when you have your own health issues, getting normal chores done take longer and more energy, so time gets eaten, you rest when you can, and before you know it you're way past your own health check-ups. Whats' one more year? Ugh!

And not everyone has the resources for outside care, or are in a position to place their loved one in a NH. Situations vary greatly, so a little compassion for those in tough places. Hugs to all you caregivers out there!

See All Answers

ADVERTISEMENT

Ask a Question

Subscribe to
Our Newsletter