I will turn 65 in 6 months. If my parents, both of whom have worsening dementia, live another 5 years, I fear I will never have a rewarding life of my own again. Does anyone else feel their life ended when they assumed the caregiver role?
I can totally relate to this. If I was single it would not be so bad but to drag my husband along on all the dementia escapades is making me feel I will have dementia myself just from dealing with this.
anjolie - I am 80 and mother is 106. Caregiving is part of my life and has been for years. However it is not "hands on" caregiving and never has been. When mother was unable to live on her own, she chose to move to an ALF. I had stated firmly for years that I could not look after her in my home or hers.
Your comment and question is "I fear I will never have a rewarding life of my own again. Does anyone else feel their life ended when they assumed the caregiver role?"
As mother has life long mental illness as well as recent dementia, I have had a degree of caregiving for many years, and I also have had and still have a rewarding life. You need to make a choice to continue to follow your own interests, at least to some degree. You also have to remain flexible in terms of what type of care is best for your parent(s) and you and your family. Your parents are declining, so care needs are increasing. Will you be able to continue the arrangement you have now, or would a facility be a better option for them?
Life brings limitations to us all. I agree with bettina that lifestyle changes can much improve our QOL. That means spending some of your time and energy on your own care. Basing your future on your hoped for heritance seems unwise to me.
So no, my life did not end when I took on POA - medical and financial responsibilities for mother. It became much more complicated for a while, and it takes work, but my life still goes on in some fashion.
There's a saying "Don't wait for things to get easier, simpler, better. Life will always be complicated. Learn to be happy right now. Otherwise, you'll run out of time." Work on that.
I support an overhaul of the American healthcare system at all levels. However, the one key thing that Americans will have to accept and be willing to pay is higher taxes. There is no way to pay for services to be expanded except taxes. The current trend is to give massive tax cuts to the wealthy and corporations. Currently, the largest single line item in the domestic budget is Medicaid nursing home care -16%. There would be more money available for Medicaid nursing home care if asset sheltering was not permitted. Everyone wants better healthcare, better schools, more infrastructure. It’s not happening until there is a shift in spending priorities and higher taxes for everyone; particularly corporations and wealthy persons.
I would always say this. Your inheritance is not your inheritance until it is left to you after your parents pass on. It is their money while they are still alive. Yes, you may need a small proportion of it to care for them as it is all time consuming but the remainder is theirs at the moment. No one has a right to an inheritance.
Don't worry. Most of us have to consider financial realities as we make decisions.
Are your parents paying you for caregiving? That certainly seems like a reasonable way to get some of your "inheritance" upfront. You'll need a care agreement and to handle taxes appropriately, but this is a good option, as I see it.
Could your dad go to the ALZ program more than one day a week? (It sounds like Mom's care is not as stressful.)
Can you increase the number of hours you have in-home help?
You say the house is the majority of your inheritance. Could you get by with just that, if the assets were used for your parents' care? Not counting the house, how long would their assets pay for assisted living (average $5,000/month for one -- don't know how 2 works) or nursing home care (average $6,000 to $8,000 each).
The goal here, as I understand it, is to have enough energy and health to have a rewarding life once caregiving is done. I still think the path to that is to maintain some kind of a rewarding life while your parents are still alive, and to reduce the stress of caregiving as much as possible.
One thing I maintained for the entire 10 years I cared for my demented husband, for example, was my book club. I read the designated book each month and met to discuss it. My husband died 5+ years ago, and I still go to book club -- only now I belong to three of them! What activities do you enjoy? Bowling? Golf? Water exercises? Knitting club? Playing cards or bunco at the Senior Center? Painting? I suggest you have a date night (or afternoon) with your husband once a week, and also some activity you can do now and continue later. Use the time your parents are at the day center, or add hours to the in-home help to cover this, or, of course, do these things and increase your fun activities if they go to a center.
Another thing I also arranged to do once a month is attend a support group for caregivers of persons with dementia. I urge you to find such a group, and make attending it a priority.
Finances are important. I do understand why you need to get something out of this after giving up other opportunities. Please tell us more about your parents' financial situation. Maybe someone can give you some suggestions.
Close to decade here, 7 or so very intense years of CG and I'm worn out to the bone. I've always had very definite interests and goals, but now I just don't care very much. Because I'm so tired. I find myself caring little about anything but places to rest and eating clean organic food when possible. And drinking tea.
Sometimes I feel caregiving turns the caregiver into NH material. We become old before our time.
I definitely think we need to overhaul the system. But I'm wondering how much of these infirmities can be eradicated or at least lessened by diet and lifestyle (ie exercise) I'm going to do an experiment on myself and see if I can try and stave off some of this deteriorating health. We'll see.
Frustrating though to think that the overhaul might come in the guise of shrinking medicaid, medicare and SS. I've spoken to several that have good knowledge of system and they say there will be little for the last of the boomers and younger generations. Same with SS--30% cut by 2030 seems to be a given. LTC insurance now is no more than a stop gap and those of us who had to do long stints of caregiving have spotty employment and little for income and retirement. At my age my dad was having a blast travel, remodeling, buying stuff etc.
My husband and I came to live in my parent's home almost 2 years ago, after my very frail Dad had a fall. My parents took my grandmother in (Dad's mother) in her later years to care for her, and it felt like the right thing to do. Plus, I've always wanted to return home. We stayed after he started improving because it was clear they both were deteriorating cognitively. This has been both a blessing and a curse for my husband and me. We gave up our rental home; I retired without much in the way of savings. One of the perks of being back in my childhood home is, the house is a large part of my inheritance. If we put one or both parents into long term care or a nursing home, the cost could consume my parents entire savings. I know others on this site have said, it's the parents money to be used to make them comfortable in their old age. Being here for them includes keeping them at home as long as humanly possible. I feel guilty admitting I need the inheritance to survive after they've gone, but that is reality. I have disabilities myself (Autism Spectrum) and while I function adequately in the "outside world", I never earned enough to save for the future. I can't in good faith pack my parents off somewhere and take over the home. I can't lie to social service professionals, except by omitting to tell them about my ASD. Would they let me continue caring for my folks, or predetermine I cannot do it? In which case, I would be the ultimate loser--and by extension, so would my husband. Sorry for laying it all out like this, but unless people fully understand, how can I expect even useful advice?
Hi Anjolie, It may be time to 'rethink' EVERY aspect of your parents' caregiving needs. I was 64 when I took on the primary caregiving role for my Mom. I ran back and forth for 2-3 months. Then I brought in a companion for a few months. Then I brought in a live in aide. When Mom fell and broke a hip, I moved her to a memory care facility. I still advocated for her care, visited VERY often a (picked a place close to me) and made sure she had the best care possible. I was fortunate to have an out of state sib that would come and stay at my place and visit Mom while I traveled. I guess this is a LONG way of saying - - - get help. Get respite care. Consider a facility that can care for your folks. My Mom died just before her 98th birthday. For all of you on this site with younger parents, consider the toll it takes on you too!
I took care of my Mom full-time from 2010 -2016 and part-time for 4 or 5 years before that. She had loss of hearing, legally blind and mobility issues. She was very demanding and difficult. Many problems with some family members. I felt like I was trapped. I thought I was getting older and would end up not having a life to enjoy. I made the decision to move and did move 1300 miles away. Ultimately, my mom moved into an elder apartment with services near me. It worked out okay. I went back to work and got married a year ago. My life is in a much better place than it was during caregiving.
As pointed out by another poster it is not uncommon to have someone in their 60’s taking care of a senior parent. It is hard on the caregivers health. You neglect your own health appointments - spending your time taking a parent to their appointing and missing your own.
It can work out, but you may have to make some difficult choices.
Anjolie, raising my hand here, too. I was also in my 60's when my parents started to need someone to drive them, etc. I wasn't hands-on, but logistical, but it was still time consuming and exhausting. Plus I was still in my career and I didn't want to let that go... I worked too long and too hard to give it up to go into something I had zero training... caregiving !!
I had loved my parents dearly but I also had a lot of resentment. My parents had decades of a wonderful fun filled retirement. Mom refused to downsize, and also refused to let strangers in the house. Dad was more easy going.
I even showed my parents brochures for a really great retirement village. Their remark "maybe in a couple of years". HELLO, you both are in your 90's". It was just one of those head banging on the wall moments. I should have moved to that village :P In fact, one of my older cousins and his wife did that as he couldn't keep up his beautiful home plus his 90+ Mother's home. His mother also refused to downsize.
If only I had known that I could have set boundaries and to stop enabling my parents, then they would have been forced to make better decisions regarding lifestyle.
I can see a world where our elders live to be 100, and a great-great-grandchild is taking care of 4 to 6 elders, not counting the in-laws if there is time to get married. With the elders outliving that great-great-grandchild.
To clarify my situation more, both Mom and Dad go one day/week to an Alzheimer's day program. Three other days we bring in a personal support worker to help Mom get dressed and showered (at least once-- she maintains she's a big girl and knows how to bathe. In reality, she won't do it). Mom sleeps away most of the day, which drives my Dad crazy. My role as caregiver is mainly the house, buying groceries, cooking and dishwashing. It's mentally exhausting because Dad's constantly trying to wake Mom (he's legally blind now) but she has some weird sleep paralysis that leaves her like an overweight rag doll upon waking. He's trying to yank on her arm (really counterproductive) and she's wailing. My dog's trembling all over and I'm answering the same questions over and over ad nauseum. If I go to another room, my Dad follows me. All this happens during the hours when help is not here. Thank God my husband spends more hours at home, taking over their care from me. Even though it's not 24/7 harassment by my parents, it feels like they hold the "special he'll" treatment for when it's just me with them.
Close to decade here, 7 or so very intense years of CG and I'm worn out to the bone. I've always had very definite interests and goals, but now I just don't care very much. Because I'm so tired. I find myself caring little about anything but places to rest and eating clean organic food when possible. And drinking tea.
Sometimes I feel caregiving turns the caregiver into NH material. We become old before our time.
I definitely think we need to overhaul the system. But I'm wondering how much of these infirmities can be eradicated or at least lessened by diet and lifestyle (ie exercise) I'm going to do an experiment on myself and see if I can try and stave off some of this deteriorating health. We'll see.
Frustrating though to think that the overhaul might come in the guise of shrinking medicaid, medicare and SS. I've spoken to several that have good knowledge of system and they say there will be little for the last of the boomers and younger generations. Same with SS--30% cut by 2030 seems to be a given. LTC insurance now is no more than a stop gap and those of us who had to do long stints of caregiving have spotty employment and little for income and retirement. At my age my dad was having a blast travel, remodeling, buying stuff etc.
Because people are living longer now and dementia occurs often late in life, many seniors are caregiving seniors. It is tough!
I agree that you are getting too old to handle this all on your own. In fact, caring for two people with dementia is pretty tough on even younger folks.
What can you do to decrease the caregiving load right now?
Obviously, placing your parents in a care center would significantly reduce your involvement and allow you to resume your own life more fully. I have no idea if that is feasible in their situation.
Enrolling them in an Adult Day Health Program would free up big chunks of your days. Have you considered that?
Bringing in home help would also be an option. This could be anything from housekeeping (cleaning and laundry) to a visiting nurse. What things do you do that could be delegated to someone you can hire?
My suggestion would be to figure out ways to reduce your hands-on involvement now, so that you can maintain some level of your own life. This will not only be good for you now, but it will ease the transition when you are no longer a caregiver.
I am so much in the same camp as you. My dad (87) and MIL (90) who has been living with us for the last 3 years are both totally wearing me out too, and there is no clear end point to the demands they continue to place. Both have dementia. I think the prospect of 70-something folks taking care of their 90-plus elderly parents is becoming more and more a reality. And this is especially due to medical advances. I really think we need to rethink caregiving in this modern age where elderly are outliving the capability of us "younger" folks to be caregivers. And provide more resources and support at a governmental/health policy level.
I can completely relate how you feel - this was supposed to be our Golden Years, right?
Your comment and question is
"I fear I will never have a rewarding life of my own again. Does anyone else feel their life ended when they assumed the caregiver role?"
As mother has life long mental illness as well as recent dementia, I have had a degree of caregiving for many years, and I also have had and still have a rewarding life. You need to make a choice to continue to follow your own interests, at least to some degree. You also have to remain flexible in terms of what type of care is best for your parent(s) and you and your family. Your parents are declining, so care needs are increasing. Will you be able to continue the arrangement you have now, or would a facility be a better option for them?
Life brings limitations to us all. I agree with bettina that lifestyle changes can much improve our QOL. That means spending some of your time and energy on your own care. Basing your future on your hoped for heritance seems unwise to me.
So no, my life did not end when I took on POA - medical and financial responsibilities for mother. It became much more complicated for a while, and it takes work, but my life still goes on in some fashion.
There's a saying "Don't wait for things to get easier, simpler, better. Life will always be complicated. Learn to be happy right now. Otherwise, you'll run out of time." Work on that.
Are your parents paying you for caregiving? That certainly seems like a reasonable way to get some of your "inheritance" upfront. You'll need a care agreement and to handle taxes appropriately, but this is a good option, as I see it.
Could your dad go to the ALZ program more than one day a week? (It sounds like Mom's care is not as stressful.)
Can you increase the number of hours you have in-home help?
You say the house is the majority of your inheritance. Could you get by with just that, if the assets were used for your parents' care? Not counting the house, how long would their assets pay for assisted living (average $5,000/month for one -- don't know how 2 works) or nursing home care (average $6,000 to $8,000 each).
The goal here, as I understand it, is to have enough energy and health to have a rewarding life once caregiving is done. I still think the path to that is to maintain some kind of a rewarding life while your parents are still alive, and to reduce the stress of caregiving as much as possible.
One thing I maintained for the entire 10 years I cared for my demented husband, for example, was my book club. I read the designated book each month and met to discuss it. My husband died 5+ years ago, and I still go to book club -- only now I belong to three of them! What activities do you enjoy? Bowling? Golf? Water exercises? Knitting club? Playing cards or bunco at the Senior Center? Painting? I suggest you have a date night (or afternoon) with your husband once a week, and also some activity you can do now and continue later. Use the time your parents are at the day center, or add hours to the in-home help to cover this, or, of course, do these things and increase your fun activities if they go to a center.
Another thing I also arranged to do once a month is attend a support group for caregivers of persons with dementia. I urge you to find such a group, and make attending it a priority.
Finances are important. I do understand why you need to get something out of this after giving up other opportunities. Please tell us more about your parents' financial situation. Maybe someone can give you some suggestions.
I've always had very definite interests and goals, but now I just don't care very much.
Because I'm so tired. I find myself caring little about anything but places to rest and
eating clean organic food when possible. And drinking tea.
Sometimes I feel caregiving turns the caregiver into NH material. We become old
before our time.
I definitely think we need to overhaul the system. But I'm wondering how much of
these infirmities can be eradicated or at least lessened by diet and lifestyle (ie exercise)
I'm going to do an experiment on myself and see if I can try and stave off some of this deteriorating health. We'll see.
Frustrating though to think that the overhaul might come in the guise of shrinking
medicaid, medicare and SS. I've spoken to several that have good knowledge of system
and they say there will be little for the last of the boomers and younger generations.
Same with SS--30% cut by 2030 seems to be a given. LTC insurance now is no more than
a stop gap and those of us who had to do long stints of caregiving have spotty employment and little for income and retirement. At my age my dad was having a blast
travel, remodeling, buying stuff etc.
This has been both a blessing and a curse for my husband and me. We gave up our rental home; I retired without much in the way of savings. One of the perks of being back in my childhood home is, the house is a large part of my inheritance. If we put one or both parents into long term care or a nursing home, the cost could consume my parents entire savings.
I know others on this site have said, it's the parents money to be used to make them comfortable in their old age. Being here for them includes keeping them at home as long as humanly possible. I feel guilty admitting I need the inheritance to survive after they've gone, but that is reality. I have disabilities myself (Autism Spectrum) and while I function adequately in the "outside world", I never earned enough to save for the future. I can't in good faith pack my parents off somewhere and take over the home. I can't lie to social service professionals, except by omitting to tell them about my ASD. Would they let me continue caring for my folks, or predetermine I cannot do it? In which case, I would be the ultimate loser--and by extension, so would my husband.
Sorry for laying it all out like this, but unless people fully understand, how can I expect even useful advice?
I still advocated for her care, visited VERY often a (picked a place close to me) and made sure she had the best care possible.
I was fortunate to have an out of state sib that would come and stay at my place and visit Mom while I traveled.
I guess this is a LONG way of saying - - - get help. Get respite care. Consider a facility that can care for your folks. My Mom died just before her 98th birthday. For all of you on this site with younger parents, consider the toll it takes on you too!
As pointed out by another poster it is not uncommon to have someone in their 60’s taking care of a senior parent. It is hard on the caregivers health. You neglect your own health appointments - spending your time taking a parent to their appointing and missing your own.
It can work out, but you may have to make some difficult choices.
I had loved my parents dearly but I also had a lot of resentment. My parents had decades of a wonderful fun filled retirement. Mom refused to downsize, and also refused to let strangers in the house. Dad was more easy going.
I even showed my parents brochures for a really great retirement village. Their remark "maybe in a couple of years". HELLO, you both are in your 90's". It was just one of those head banging on the wall moments. I should have moved to that village :P In fact, one of my older cousins and his wife did that as he couldn't keep up his beautiful home plus his 90+ Mother's home. His mother also refused to downsize.
If only I had known that I could have set boundaries and to stop enabling my parents, then they would have been forced to make better decisions regarding lifestyle.
I can see a world where our elders live to be 100, and a great-great-grandchild is taking care of 4 to 6 elders, not counting the in-laws if there is time to get married. With the elders outliving that great-great-grandchild.
All this happens during the hours when help is not here. Thank God my husband spends more hours at home, taking over their care from me. Even though it's not 24/7 harassment by my parents, it feels like they hold the "special he'll" treatment for when it's just me with them.
I've always had very definite interests and goals, but now I just don't care very much.
Because I'm so tired. I find myself caring little about anything but places to rest and
eating clean organic food when possible. And drinking tea.
Sometimes I feel caregiving turns the caregiver into NH material. We become old
before our time.
I definitely think we need to overhaul the system. But I'm wondering how much of
these infirmities can be eradicated or at least lessened by diet and lifestyle (ie exercise)
I'm going to do an experiment on myself and see if I can try and stave off some of this deteriorating health. We'll see.
Frustrating though to think that the overhaul might come in the guise of shrinking
medicaid, medicare and SS. I've spoken to several that have good knowledge of system
and they say there will be little for the last of the boomers and younger generations.
Same with SS--30% cut by 2030 seems to be a given. LTC insurance now is no more than
a stop gap and those of us who had to do long stints of caregiving have spotty employment and little for income and retirement. At my age my dad was having a blast
travel, remodeling, buying stuff etc.
I agree that you are getting too old to handle this all on your own. In fact, caring for two people with dementia is pretty tough on even younger folks.
What can you do to decrease the caregiving load right now?
Obviously, placing your parents in a care center would significantly reduce your involvement and allow you to resume your own life more fully. I have no idea if that is feasible in their situation.
Enrolling them in an Adult Day Health Program would free up big chunks of your days. Have you considered that?
Bringing in home help would also be an option. This could be anything from housekeeping (cleaning and laundry) to a visiting nurse. What things do you do that could be delegated to someone you can hire?
My suggestion would be to figure out ways to reduce your hands-on involvement now, so that you can maintain some level of your own life. This will not only be good for you now, but it will ease the transition when you are no longer a caregiver.
Best of luck to you!
I am so much in the same camp as you. My dad (87) and MIL (90) who has been living with us for the last 3 years are both totally wearing me out too, and there is no clear end point to the demands they continue to place. Both have dementia. I think the prospect of 70-something folks taking care of their 90-plus elderly parents is becoming more and more a reality. And this is especially due to medical advances. I really think we need to rethink caregiving in this modern age where elderly are outliving the capability of us "younger" folks to be caregivers. And provide more resources and support at a governmental/health policy level.
I can completely relate how you feel - this was supposed to be our Golden Years, right?