Am I the only daughter taking care of her Dad?

[KathleenW79511]

My Dad is 91, he is still living in his own home.  He is only a few miles from me.  I am an only child.  My Mom died 13 years ago.  So Dads care is all on me.  At 91 he is tired, grumpy, he has no filter.  He is diabetic, had triple bypass many years ago.  He had colon cancer, bladder cancer.  The problem now is he looses blood.  He has to be on a blood thinner because of his heart but it's contributing to the blood loss.  He has been hospitalized twice just since the new year and sent to out patient to receive more blood for a total of 5 units in 4 weeks.  I have to drive him everywhere.  I do his grocery shopping, errands, prescriptions.  I live in a constant state of stress.  My retirement is over.  I have fibromyalgia, migraine headaches and arthritis.  Stress is the last thing I need.  I have only been taking care of Dad for 13 months.  Thank God for a wonderful husband.

[RS6730H]

Kathleen, as others have already said here, you are definitely not alone...and I get that it can feel like you are. Others have already given you great advice on both the friend and community support piece - I echo that. I will just add that no matter how incredible any of us are, it isn't practical or necessary for us to go it alone. I try to remember that too, especially when my dad looks to me for something because he trusts me most. That's lovely...and even Wonder Woman needs a nap now and then. 😉

I am also an only kid, also a daughter, and also now walking alongside my dad as he ages. He moved from his home 3,000 miles away to live near me about 4 months ago. We live in the same neighborhood, walking distance apart. Though we have spent a lot of time together over the years and definitely over the last 10 yrs since my mom passed, this is a whole new chapter for us both. He is choosing not to drive here, so we now do errands together on weekends. I'm lucky in that Dad is incredibly flexible about when we go places or visit since I work F/T. That doesn't stop me from feeling guilty that I *should* spend more time with him, but I'm trying to focus on frequency and quality of the time we spend. In addition to the weekend errand time together, for example, a quick visit and a hug a few times during the week goes a long way when someone doesn't really have anyone else to chat with. We don't have any other family in this area but I have a tremendous circle of friends that I know I will need to ask for more help from one day. We also live in an incredibly well-resourced community, so I have barely scratched the surface on what's available here for both of us. 

There are ups and downs in everything, including our mostly good journey so far. Boredom, loneliness, guilt, miscommunication, depression, anxiety - I feel like all have visited us at times already. I have felt overwhelmed more than once. I've doubted myself more than once, too. I admire him for making this move, especially before a health crisis made it a requirement. Mind you - he has had multiple trips through the hospital in the years since Mom died, and up until now, I've been making cross-country jaunts to be by his side for them. I've been fortunate to keep my career and my friends throughout but it hasn't been easy, especially when friends have other demands and/or they lack experience with caregiving. That has felt very isolating at times. Sometimes people just can't be there for you. I get it...it isn't the only topic of conversation I want to focus on, either! I find one thing that works for me when I'm feeling isolated or overwhelmed is to journal about it and/or amp up my self-care. That, and connecting with a friend who CAN listen, makes all the difference.

So many of you in this forum have even more to manage than I do, either because your loved one lives with you or their health needs are more demanding/limiting. My situation is not nearly as taxing as yours (yet), so I tip my hat to you. If nobody has told you lately, let me be someone who says I'm sure you are doing a lot of good - probably a lot more than you think. You are a gift to your loved one even if they don't or can't tell you. They are a gift to you too, even when it doesn't feel like it. Between the medical events, the recovery weeks/months, the emotional support throughout, and more recently, the extra cognitive and tactical support I'm providing Dad around financial/legal/real estate matters, I feel like I have more caregiving experience than I thought I would at just past 50. I'm also still learning and try to remind myself of that every day. I've never been a 50-something solo adult caregiver of an 80-something widowed parent before...so why would I expect to be an expert already?! I do think there should be an adult Girl/Boy Scout patch for Caregiving, though... 🙂

Thanks for the opportunity to share. -Robin

[christineb850423]

I am also a daughter taking care of her Dad but I have help from my Mom. My Dad has had 4 heart attacks & 2 strokes.  He is on blood thinners too. He has asbestos in his lungs. Now dementia from the stroke causing hardening of the arteries in his brain.

My mother works full time and spends a lot of her weekend at church so it seems I have been picking up more and more of the responsibility over time.  I take him to his doctor appointments, get half of his meals together, I do the grocery shopping, I fill his medicines, the biggest time investment is when my mother works late. I sit and talk to my father or watch TV with him.  I don't like him to be alone and he keeps asking where Mom is.  So it seems I can't really do much and it gets stressful because like you said, he can be grouchy.  My father has dementia but hasn't gotten to the point of forgetting us yet.  I sit and listen as he recounts the same stories to me a zillion times.  I like to be there for him though because it makes him happy, remembering all these past experiences he talks about.  He can drive me crazy when he asks me the same question 20 times in a row! 

So know that you are not alone.  Yet we are blessed to have this time with our fathers.  In my situation, when he starts forgetting friends and family, my mother and I will be the two he remembers the longest since we live with him.  He sees me every day and when he forgets my sisters, he will still know me, at least a while longer.  I cherish this time with him and to be able to give back after all he did for me in my life.  Look at this time with your father for what it is.  Very stressful, but when it is over you are going to look back on it and be glad for the time you had with him.  I went through this when I took care of my grandmother.  She was a difficult woman and liked to fight with people.  I did all I could for her and I had a lot of stress and bad days.  I had days I didn't think I could stand another minute of her.  Then when she was gone, I felt guilty I didn't do more for her!  I wished I didn't argue back the times she picked a fight with me.  So do your best for him, you won't regret it.  Find a way to destress.  I say that as my blood pressure is sky high, my medicine doesn't seem to work anymore, and I am a person who can not find a coping skill to replace the only one I have- food.  I eat myself to death when it gets too stressful for me.  I don't recommend that.  Find a positive way to deal with your stress and just hang in there and do all you can to be pleasant and make your father happy and see that he is cared for.

[agoyer]

@christineb850423 I've felt the same way - my Dad still "knows" my sister and I who provide most of his care (he in advanced stages of Alzheimers) on some level - it's very clear...he responds differently to us, he is visibly more relaxed and content, his energy is different, and every now and then he actually says our names out of the blue still. But other family members who have chosen not to be as involved in his care don't have that kind of connection. They miss the opportunity to have that closeness, to provide that safeness and security for him that he has provided for us all our lives (I still feel comforted when I put my head on his shoulder!). 

I'm with you all the way! 

Amy Goyer, AARP Family & Caregiving Expert 

[GaryH178340]

I want to thank Jane for what she said.  I truly believe it takes a village to take care of an elder, as was said it takes a village to bring up a child. 

I am in an emotional state at the moment, just after 'arguing' with my Mom (not intentionally) about food she is throwing out.  Not her fault.  Dementia.  But I am tired of the guilt of her having no food (yes she has food - I make sure) and taking that stress along with all of the other practical necessities. 

I am new to the forum, so forgive me if I am rambling,  but I just want to reach out and say to Kathleen:

You are in good company, and the very fact you are here shows immensely how much you care.  I have to believe it matters.

Thank you for hearing me.

[agoyer]

Welcome Gary! Glad you joined us! Be gentle with yourself, caring for someone else is intense, and caring for someone who has dementia is caregiving on steroids. Especially at the stage your mother is in. It's so hard to always be patient - mostly I notice it when I'm tired. I don't get irritable with my Dad but I get irritable with others. It happens. 

Keep filling your tank so you can keep going and let us know if/how we can help! There is so much great info in our line site too at www.aarp.org/caregiving. 

Amy Goyer

AARP Family & Caregiving Expert, (currently caregiving for my 94 year old Dad who has Alzheimers and lives with me)

[JaneCares]

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@GaryH178340 wrote:

I want to thank Jane for what she said.  I truly believe it takes a village to take care of an elder, as was said it takes a village to bring up a child. 

I am in an emotional state at the moment, just after 'arguing' with my Mom (not intentionally) about food she is throwing out.  Not her fault.  Dementia.  But I am tired of the guilt of her having no food (yes she has food - I make sure) and taking that stress along with all of the other practical necessities. 

I am new to the forum, so forgive me if I am rambling,  but I just want to reach out and say to Kathleen:

You are in good company, and the very fact you are here shows immensely how much you care.  I have to believe it matters.

Thank you for hearing me.

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Hey Gary! Welcome!

I have to believe it matters, too. You matter. How much work it is to be patient with your mother really really matters.

What village supports you?  Tell us more if you can. Anytime. We're here. We're not live chat but eventually we get to typing...

Jane

[GaryH178340]

OH,  and YES!!!  DEFINATELY get an eldercare attorney!

[JaneCares]

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@KathleenW79511 wrote:

My Dad is 91, he is still living in his own home.  He is only a few miles from me.  I am an only child.  My Mom died 13 years ago.  So Dads care is all on me.  At 91 he is tired, grumpy, he has no filter.  He is diabetic, had triple bypass many years ago.  He had colon cancer, bladder cancer.  The problem now is he looses blood.  He has to be on a blood thinner because of his heart but it's contributing to the blood loss.  He has been hospitalized twice just since the new year and sent to out patient to receive more blood for a total of 5 units in 4 weeks.  I have to drive him everywhere.  I do his grocery shopping, errands, prescriptions.  I live in a constant state of stress.  My retirement is over.  I have fibromyalgia, migraine headaches and arthritis.  Stress is the last thing I need.  I have only been taking care of Dad for 13 months.  Thank God for a wonderful husband.

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Hi Kathleen,

What Amy said. Particularly on caring for yourself. But everything else, too. It takes a village to help a cranky medically unstable 91 year old.

I want to add something else. Perhaps you have done this but if not, please look into his assets and savings. You can pay for services for him out of his money. He needs to step up his own finances to help you. If he's poor, then Medicaid needs to help. if he has considerable assets, time to liquidate: this is his rainy day. If he's in the middle, then finding out what the area agency on aging in his town is going to help a lot. If he's a Veteran, as Amy mentioned, there are services, along with a huge amount of paper work. Before you collapse altogether, its time to marshall other services and support. You might need to consult an eldercare lawyer. The social workers at the agency for aging should know a lot. Get going.

Also, is he clear about what he wants to do? how far to go? does he have a living will? maybe he doesn't want 10,000 blood transfusions. has he made it clear how he wants to live the rest of his days? difficult conversation to have under the best of circumstances, but it is usually a mercy to the patient and the caregiver to know how far things need to go before hospice. And an old guy like your dad can be on hospice a long time, much longer than 6 months, as long as he is declining. The home care support is phenomenal under hospice. 

So glad you wrote. Please write  more. We are here.

Jane,

former hospice social worker and geriatric care manager.

[KathleenW79511]

Jane, Thank you very much for all the information.  I have no knowledge or experience with any of this.  This process of changing the roles between father and daughter where now I am caring for him and I am driving, doing most of the talking at the doctors appointments because he doesn't want to, me taking care of all his medications and constantly talking to him about drinking water etc, etc, etc has been hard for both of us.  Since it's been just over a year now we are both getting more comfortable with it, most of the time.

so far Dad has my name on everything and I have power of attorney.  He has a living will and a do not resuscitate on file at the hospital and I have the originals.

i will start getting in touch with local agencies to see what kind of help is available. You are right I need to do it before I collapse LOL!!  Thank you so much I am gratefully yours, Kathy

[JaneCares]

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@KathleenW79511 wrote:

Jane, Thank you very much for all the information.  I have no knowledge or experience with any of this.  This process of changing the roles between father and daughter where now I am caring for him and I am driving, doing most of the talking at the doctors appointments because he doesn't want to, me taking care of all his medications and constantly talking to him about drinking water etc, etc, etc has been hard for both of us.  Since it's been just over a year now we are both getting more comfortable with it, most of the time.

so far Dad has my name on everything and I have power of attorney.  He has a living will and a do not resuscitate on file at the hospital and I have the originals.

i will start getting in touch with local agencies to see what kind of help is available. You are right I need to do it before I collapse LOL!!  Thank you so much I am gratefully yours, Kathy

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So glad to hear from you again! Yes, do see what's available locally. www.eldercare.gov will tell you which one to call first. So glad he's already taken care of legal stuff. And if you need hands on help and/or he deteriorates, dip into his money to hire home health aides from a reputable agency. It will be worth every penny. And although most of my clients were reluctant to a) part with a red cent and b) let strangers come into the home, most were relieved to have help and kinda fell in love with their caregivers. Gratitude is a wonderful thing.

hang in there and please keep us posted. we all learn from each other.

Jane

[agoyer]

@KathleenW79511 You are not the only one! I've been intensively caring for my 94 year old Dad who has Alzheimer's and lives with me. for the past 12 yrs. My Mom did too but she passed on 4 years ago, and I cared for my sister from a distance too - she passed 3 yrs ago. I do have a sister who helps and lives next door, so that helps a lot. Nevertheless, I work full time and it's all very stressful! I've had fibromyalgia diagnosis for more than 25 years, so I understand that too.

It sounds like you are at one of those points where you feel like throwing up your hands but of course you can't give up! I know how hard that can be...

I often tell people that if we count on family to be our caregiving team our team will be too small. Clearly that's true for you as you have no siblings. Wonderful that your husband is supportive! But I urge you to think about other ways to build your team; you really can't do it all - not really humanly possible! I try to think about what are the things that only I can or want to do, then fill the gaps with other services and people. Sometimes the help is actually for me, to free me up for the caregiving tasks I need to do. 

Is your Dad a Veteran? If so, you could enroll him in VA health care and he may be eligible for some help from them - help with bathing, housekeeping and respite for you. Check the Veterans Affairs Caregiver Support - http://www.caregiver.va.gov/  Toll-free # 1-855-260-3274 to find out what he might be eligible for. He may even be able to get cash benefits to help pay for someone to help care for him.

You can also contact that Area Agency on Aging to find out what services and caregiver supports are available locally. To help care for him, AND to support you. The stress can be so overwhelming - a caregiver support program can help! 

And I have a suggestion to think about self-care for you to manage the stress etc. I look at it as a very practical, not selfish thing. I don't expect my car to run efficiently on empty and I can't expect myself to either! So I pay attention to things that fill my tank - quick things like a cup of coffee, phone call to a friend, longer things like a class, movie, lunch with a friend, doing something creative, tune-ups - a week or at least 3-4 days when you are NOT caring for ANYONE, and routine maintenance like SLEEP (my top priority), exercise, eating healthy foods etc. 

Please let me know how I can help!

Take care,

Amy Goyer, AARP Family and Caregiving Expert 

[KathleenS206521]

This hits home for me, I am an only child and I often think about how to take care of my mother whenever she gets older. It's scary at times. I wish you both wellness.