When even one more day seems like one too many.

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My father is 88 and is in failing health and has dementia. Sometimes it seems like early dementia, other times moderate. He would not ever agree to have an evaluation so that we could know which stage he's in. I'm his caregiver, single and living with him. In the past few years it is becoming increasingly difficult. I'm in my late fifties and am starting to have health problems of my own. All I believe do to the stress of caregiving.

He absolutely refuses a caregiver coming into the house to help out. I don't have to assist him with his toileting or bathing yet, but I know that point is not too far off. He has always been a difficult, controlling and manipulative person.

He has extreme anxiety about having at some point to go into a hospital and then a nursing home. That's understandable. He will have no control in a nursing home. He has screamed and yelled at me that it is my duty to take care of him. He says his welfare comes before anyone else's in my life.

I've been in therapy for years starting with when my mother was living because of the way he treated her. I felt I was the buffer and took it upon myself to try and make things better for her. I realized through therapy that was an impossible job given the situation. I'm still in therapy because of the stress of being his caregiver.

Being a member of this site does give me insight and hope, however, sometimes I read about a caregiver going through some pretty difficult times and they'll say that their parent is in their mid or late ninties! I feel many days I can't take another week of this let alone a few more years. He could possibly live in this suspended state of mild or moderate dementia and ill (but not too seriously ill) health for years to come. Where will my live be then? Then I feel guilty that I shouldn't have these feelings even though my therapist tells me they are normal thoughts. I feel as though I am in a state of suspended animation!

Thanks for listening


I'm feeling guilty because I read

9 Comments

Denni, I am glad you are in therapy. Has your therapist told you any of these things?

1) It is NOT your duty to care for your father personally. You are fulfilling your duty if you see to it he is safe, clean, and has his basic needs met. This does not mean hands-on 24/7 care.

2) His welfare does not come ahead of your own. It does not come ahead of a spouse or a significant other or of the chance to meet such a person.

3) You cannot control his decisions. You can control your own.

4) He may remain in his current state for another year or two years or seven years. He may decline slowly or very rapidly and need even more care and attention than he does now. Waiting for him to die before you begin your own life does not sound like a good option.

5) He can absolutely refuse to have a paid caregiver come in. He can absolutely refuse to go to a care center. But you know what? You can absolutely refuse to continue to be subservient to him. You can absolutely refuse to do 24/7 caregiving. He is not the only one who has choices.
I absolutely agree with Jeanne, as long as you are seeing that he is safe and taken care of that is fulfilling your obligation. My father is 90, on dialysis and can't walk without assistance. My mother is 87 and has mild dementia, my sister and I are here locally and tried doing everything ourselves and it just didn't work out. I work fulltime and have a family, she is retired but has a very full life in the ministry and has grandchildren. My parents didn't plan for their retirement so there is not much money but we have a caregiver come three days per week, she takes dad to dialysis and cooks for them and does the grocery shopping. We go on weekends and pay bills and check things out and of course are available when needed in between. But I do no feel guilty about this, my father is very demanding and can be very abusive at times and not a joy to be around. He is a veteran so he does get benefits through the VA, if your father is a veteran I recommend checking that out, they do offer home care in some circumstances. My father has a nurse that comes biweekly, checks his meds and vitals and prepares his medication, a huge help. Good luck
I totally agree with both above. Please reread both severals times so they are memorized and then take your life back. You have gone above and beyond what one person can do. Who is going to take care of Dad if you get sick?

It isn't easy but you have to do what is best for you, first and foremost. God bless!
I know it is not easy, and that you do feel quilty however... please, please take care of you... does he have a friend or another person who could come and stay so you could get out and do something for yourself. maybe you should consider getting some respite care... Please do not let him bully you, that is just not fair!
Hi Denni. I just want you to know I feel your pain! And, I hear the despairation in your post. I was wondering at this point are you at home with him 24/7 or are you working cause he is ok to be alone for some amount of time. I am just thinking that if you are working outside the home-at some point he will need someone with him all the time. He is gonna have to accept it. Maybe he should be in counseling! haha. Everything Jeannegibbs said is true. You have to take care of yourself first. And it is your right to a happy life.
When I took my mom in, she was at deaths door. That was 8 years ago! Everyone says I brought her back with all the good care I give her. I had no idea that she would live this long. And she is not showing any signs of going anywhere soon! I am here 24/7/365... This year I have found an adult daycare for her to go go a couple days a week. She did not want to go. I told her that I couldn't take care of myself-dentist visits, dr visits, cause I couldn't leave her alone...so she reluctantly said she would go. There are days she would rather not, but she does and usually comes home happy-even tho she doesn't remember much of it! I have a neighbor who come and sits with her if I have to shop during the week on a no daycare day. She loves her. She hasn't liked some other caregivers I have tried and we are still working on finding the "right" one. Anyway, I am thinking if you can get someone to come in and meet him and stay with him for an hour...and then again another day for an hour or two...maybe he will warm up to it. Just prepare the caregiver! It may just take time-or maybe it won't work at all...but I think you have to try so you can make some decisions. Rule things out.
Try really hard not to fall for the guilt he tries to lay on you. It is terrible for our parents to do that to us...but they do. And just tell him you are trying to care for him the best you can and that will mean having others help you care for him so you can have a life, keep you sanity, get to Dr visits, shop, and see friends. You just have to do it. I know how hard it is cause I am living it too.
Keep going to counseling! I go too and it really helps me get through this.
What you said about being a buffer really struck a chord. I was staring at mom the other day thinking that I don't remember a time when I didn't take care of her. It started when I was very young cause my dad wasn't the nicest hubby/father/man... I am at least fortunate that she outlived him...so she can have some nice years with no fear etc. It must be especially hard for caregivers who are taking care of the not so nice hubby/father...I am sorry for your situation. It is so tough.
We are here for you on this website! We are all in this together! Good luck with him! Hang on to yourself! And keep us posted!
Mame
When I was a little boy my father taught me something that has stuck with me to this day. "If you don't like it here, there’s the front door!"

When I moved in to take care of him 7 years ago I was 46. When complaining about the "smell" in the house (urine smell) He exclaimed "Well, there are just some things you just have to put up with!"

To which I replied "Dad, I don't have to put up with anything. You see, I know where the front door is! You taught me that one."

He resisted when it came to adult diapers too.

Today those disposable diapers are changed 4 times a day and the house smells normal. :)

As a child we "follow". As a parent we "lead". As a caregiver our leadership skills are called upon more than ever. We can no longer follow an elder with or without dementia because in the end you have to wonder ... "Where are we going?"
Denni, I too feel many days I can't take another day or even week or anymore years. I also feel guilty about these bad feelings. I started keeping a notebook which I call my "Anger Journal". When I'm frustrated beyond means, I write my angry words and feelings in this journal. I hope to burn this journal when she's gone.

My mother-in-law is 86 and over the past 3 months has the behavior of a 3 year old. She also doesn't like many people which really does make it hard to find time relief for ourselves. She has her husband's VA pension, Medicare, Medicaid, but it's not enough to put her in a NH so we're stuck! This really sucks!

Find whatever moments you can to "fill your bucket". We can't help when our bucket is empty.

Our thoughts and prayers are with you. Try to get help - Mom was against it until we finally had someone come and work with her. We have a bather, nurse, and social worker (for me more than for her). Hospice really helps and the nurse told me people qualify more than they realize. Someone doesn't have to "dying" to qualify. Check into it. It saved me!
Thank you all so very much. All of your advice is so on target. My father has always been a needy person looking back. No one ever abandoned him. He was born into a loving family from my experience with them (aunts, uncles, grandparents). Maybe he was spoiled at an early age and that's why he is the way he is. Only guessing.

It isn't going to be easy. He is trying to push all the buttons he can to have things his way. He has alienated my siblings who've tried to help me. Been quite nasty with them for no reason. I believe it was a manipulative act to have only me care for him and that makes me so angry. I'm taking baby steps with him, and plan to lead up to giant steps.
Denni, I'll keep you in my prayers. Stay strong and well.

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