Mom is 79 years old, hard of hearing and has dementia. The ONLY people in our family are me, my 2 adult children and my mom. I am the only caregiver and it is wearing me out/making me hate my life and my mother. Of course I am a terrible person and lousy daughter for feeling this way.
Since my mother does not drive and has no friends and refuses to go anywhere without me, she has a very dull and lonely life. Her only goal every day is to see me. Yeah, I know, I should be grateful and happy and everything else, but I'm not. Every conversation has to be said twice as she refuses to wear the hearing aid and because she has dementia (and along with it a not so sunny disposition), it feels like torture every day I see her. It is quite easy for me to have to spend 25-30 hours a week with her.
Because of all this, I had to hire a caregiver. However, my mother still calls me when she is with the caregiver to see if we can get together. I hate myself for being such an uncaring daughter that I DREAD spending any time with her. How much fun is repeating yourself over and over again to someone who won't wear their hearing aid, then having to repeat it five more times because they keep forgetting because of the dementia and then having to figure out how not to piss off my mother as she gets very angry if my way of thinking infringes upon her (right) way of thinking? It ain't much fun.
I know she is my responsibility but I feel like I am going to explode under this weight. If only I had a sister or brother or a family member or she had a friend or if she would go to the senior center or invite a neighbor over, or... well, you get the point.
Sorry to ramble on, but I needed to give you the background info before asking the question, which is should I go for 4 days "off" instead. I am salivating at the thought of not having to shout loudly, repeat myself consistently, and listen to my mother's constant complaining. I made a list of advantages and disadvantages. There is only one under each, but it is a very strong approval/disapproval.
Advantage: I need a break
Disadvantage: Guilt.
This means that instead of seeing her on Mondays, Wednesdays, Fridays and Saturdays, I will instead see her on Mondays, Fridays and Saturdays (3 whole days inbetween there where she won't see me. Oh God). Truthfully though, no matter how much time I spend with her, it's never enough. She's never happy!
PLEASE HELP. I don't know what to do? I feel that my mother's happiness and what SHE wants is more important than what I want because she has no one else, but at the same time she is strangling me with her dependency.
Karen
(a very unloving, selfish daughter)
Don't feel too bad about not having siblings. I have 4 brothers, she has 2 brothers and she still lay's it on me. I have been told ALF's are covered by medicare so I am trying to muster up the courage to check them out. I feel EXACTLY the same as you do and I fear if I do put her in an ALF I will walk away and never look back due to the resentment I am developing. In addition to that my mom took care of her mom, at our home, until the day my grandmother died. I remember it was difficult for her but she just seemed more matter of fact about it. So, I have the added guilt of she did it, why can't I.......lol!! I guess we have to become like doctors and try to detach from the emotional, do our best and do no harm. As my husband says to me, "take it one day at a time". Good luck to all of us.
Guilt is totally appropriate if you've done something immoral or illegal.
If you haven't, then stop wallowing in the guilt and turn that energy into something you can benefit from. All you can do is your best. And your best is absolutely just fine.
If you have a loved one at home who is sweet, easy, and no trouble, I'm not talking to you. Count your blessings.
To anybody dealing with a complicated situation and is hesitant about letting help come in or utilizing a care facility, think about this:
== There's a reason airline safety tells us to put our own oxygen mask on first before helping others. You're of no use if you're gasping or passed out. Your oxygen mask may very well be the sanctuary of your home. If there isn't anywhere you can escape stress and get rest every day, you are setting yourself up for a really big problem with your own health. It's not "if", it's when.
== If it's possible to do this 24/7/365 for years and years, then why do nurses and staff at nursing homes work in shifts and get shift breaks? Even professionals get planned breaks so they can stay sharp and not burn out. What makes you think you're different?
==Care facilities are not what they were in the 1970s. If you haven't toured a facility, you should. Most of the ones I've seen look like a nice hotel until the spaces that have to look clinical because of the care level provided. They really do try to keep it as homey as possible.
==Care at home does not save anything. Count cost of supplies, cleaning, wear & tear on the home, washing machine/dryer/dish washer/hot water heater, carpet/flooring, and your time. Care at home comes with a steep price most people don't add up.
==If you feel obligated, why is that? Is this something you would expect your children to do for you or would you tell them to please live their lives?
==Look at the opportunity cost of turning home into a 24/7 care facility. Think about what you can't do anymore, and for how many years it's going to be. My grandmother lived in my aunt's living room at the end of her life, but that was only for a period of months, not 10-12 years.
==Look at the impact to others living in your home. They have a right to a quiet peaceful sanctuary from the world. Are you able to enjoy friends, hobbies, or even simply be a family who can spend time together in the current arrangement?
==What happens if you get hurt care-giving? What's your emergency replacement plan? How are you going to heal if there is a completely dependent person living with you at the same time? This might throw your whole arrangement into crisis very quickly. Who will make other arrangements? Who knows the details of the insurance, medicare, bill paying etc besides you? At my house, it would be nobody. At a care center, they can call somebody else in right away if a staff member gets hurt.
== Are you trained on universal precautions to protect yourself & the person you are caring for against infection? Especially during flu season.
==What is your plan to handle combative, violent, and out of control behaviors?
==If you're starting to feel like you're drowning, overwhelmed, exhausted, and about to jump in front of a bus, YOU NEED HELP. Do you find yourself getting short, abrupt, or hostile toward the person you're caring for? Is it hard to hold in your feelings anymore? This is not something you can just suck up and get past with willpower. Did you mean to run an amateur nursing home in your house? Probably not. These signs are of a dangerous problem emerging that MUST have attention before a really unfortunate crisis happens. When you're at this point, you MUST find some place to offer respite care outside your home. You MUST find counseling from someone who can give you support. Getting a respite break is crucial so you can gather your thoughts and make a plan for what's next. Going back to the way it is right now is NOT an option.
Second, everyone is responsible for his or her own happiness - even your Mom. She is choosing to isolate herself and I'll bet that started years ago.
Third, you have every right to protect your health and sanity.
You did not say where your Mom lives. Is she with you or in her own home?Regardless, she would really benefit from an ALF. She would get daily interaction with a variety of people, even if she does not participate in the activities, etc. Her focus would shift from you to her life there. She needs her own space and life. This is normal and what every person should experience regardless of age. The minute we depend on someone else for our sole support, no one is happy.
If you could find another living environment for her, her daily needs would be taken care of and you could go back to being the supportive loving daughter again.
It is unrealistic for anyone to become someone else's entertainment, caregiver, medical staff, and landlord. It is just too much....so release the negative thoughts. Start looking at ALFs and other adult living complexes in your area...many of them have memory care facilities now.
good luck
It sounds like AL might be a good option for her, or some other long term care facility. Dementia is progressive. It is unlikely she'll be able to live alone, without 24-7 supervision, indefinitely. What will you do then?
Yes, long term care is terribly expensive. Yes, she'd have to sell one of her homes to qualitfy for Medicaid (I assume -- I'm not an expert.) Yes, this would eat into your eventual inheritence. That is sad. But surely you want the best for her now. You don't owe her your independence and your sanity, and she doesn't owe you an inheritence of a certain size.
Now that so many of us are living longer and longer and needing more resources for our own care, it is becoming rare for a working class couple to be able to leave a sizeable inheritance to their children or grandchildren. It is sad but it is a fact of the modern world. I have told our blended family of 5 kids that they will share and share alike in any estate, regardless of who dies first. There will be no difference between the "step" and the "natural" children of the surviving spouse. But I've also told them not to expect there to be anything leftover from caring for dad's dementia and who knows what I might develop down the road. Old age is expensive. Sorry.
Dementia patients may not remember events but their emotional memory is excellent. So even if she refuses at first, try to get her to go to a good adult day care and see if she might, after a while, get to enjoy it.
1) An Interfaith volunteer group
2) A caregivers support group
Now, use 1) to be able to attend 2).
Call the nearest Visiting Nurse Association for leads. Call your nearest state agency on Aging for more leads. Call the Alzheimers Association for even more leads, advice, and emotional support.
Take the break and enjoy yourself
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