My husband and I have been taking care of my 73 year old father for a little over two and half months now. He requires 24 hour care. It looks like dementia might be creeping in. He forgets my husbands name. Two other people can be in a room with him and he has to yell for me. It’s starting to really wear me down. I’m just so frustrated with things. To the point that this evening my husband and I had an discussions about how to put a depends on!
I am able to get out of the house a few times a week. But that isn’t seeming to help me or my attitude.
How do you cope, survive, manage without resentment?
My mother was 90-91 when early dementia was noticed. She was still somewhat capable, but not really safe at home alone. I managed by bringing supplies, food, take her to appts, etc (we had to take the car), but she really needed a safe place. My place wasn't it. My brothers were not going to be able to care for her. She moved (not without resistance!) to MC at age 93. She did well for quite a while, still able to get around on her own. She transitioned to a rollator (~95), then to a wheelchair (age ~96), mostly from lack of use and fear of falling, though she wasn't prone to falls!
Just after turning 97, she had a stroke. It slowed her down some, but still wanted to do what she could. She likely had another several months later, which is what took her from us, not the dementia!
The point is that she lived at least 7 years with dementia. If not for the strokes, who knows how much longer she'd live? Her reality was about 40+ years ago, but fairly stable.
Your dad is only 73, so you could be looking at MANY more years, and it will only get harder to care for him. You've only been doing this for a couple of months and you're already climbing the walls!
I would highly recommend you start looking at MC places and figuring out what he can afford. Consult with EC attys might be helpful as well.
Medicaid can help those who need it, but generally most states pay for NH, not so much MC. Some states do cover it, but not many. IF he could qualify for Medicaid, but not NH, it can cover some in-home help. It won't be 24/7, but his income/assets could help hire some additional help for you. If you have hired help, don't respond even if he yells for you. Let him get used to the help! He might also benefit from a mild dose of anti-anxiety medication, to take the "edge" off. Are his "difficult" times more or less all day, or certain times of the day? If all day, he may need regular doses throughout the day. If only certain times, like later afternoon/early evening, one dose might be enough, taken BEFORE he usually melts down.
Mom's only sun-down episode was due to UTI (**BTW, have him tested, preferably a culture, not just the dip stick test! Blood work too. UTIs and imbalances can cause dementia-like symptoms.) She'd be fine in the morning, but afternoon and evening? Yikes! The lorazepam lowest dose was enough to keep her calm while the UTI was treated. Nice thing about it, worked first time, every time and there's no need to wean off it.
You may get comments about how awful the facilities are, but that is YOUR job, to check the places first, see hear smell taste touch, to find the better places. Mom's place was very nice, the staff was great, the food was good, the place was clean, mom was always clean, fed and happy. I would choose the same place again, if I had to do it over again. I've told my kids if I ever need care, this is the place! They have IL/AL/MC, but mom had to go right to MC.
Check with your local (or national if you have no local chapter) Alzheimer's Association for learning more about dementia, what to expect, how to communicate, how to cope with behaviors, medical and legal steps to take, referrals for home health care and Care giver support groups, The Alzheimer's Association is a wonderful resource for dementia related issues. You can start with alz.org.
He needs to see his doctor about these symptoms, if he hasn't already. There are tests for Alzheimer's and other forms of dementia. There are medication which slow the progress.
You need somebody to come in and help. Someone trained to deal with dementia and all that goes along with mental and physical decline.
Take care of yourself. Your mental, emotional and physical health are codependent one upon the others. Abuse can compromise your own health. I thank God that you have such a understanding, loving and compassionate husband. Do not allow what is going on with your dad to disrupt the harmony of your relationship with your family. There may be a time when you have done all that you can for your father and have to leave it to the professionals. Be prepared. I am praying with you 🙏💗
Prayers
How can you and your husband expect yourselves to know how to do the work of a professional in-home caregiver without any training or experience in it? If the two of you are together trying to figure out how to put a Depend on someone, then you need some help and that's okay. It's to be expected that you would feel a lot of resentment. Very suddenly and recently your life and home was hijacked by a situation you have no training on how to deal with, yet it now requires your attention 24 hours a day. Every need, every demand from A to Z. So please don't guilt yourself for feeling resentment over all that. There needs to be homecare services coming to help.
A good CNA with homecare experience will not only help with the caregiving, but they can teach you the proper way to put a Depend on someone, how to safely transfer them, how to do their hygiene care and many, many other things. These daily caregiving tasks can result in serious injury to your father and yourselves if you don't know how to properly and safely do them.
Please, go online to a caregiver website and start looking for potential caregiver help. If you hire privately you will be able to vet a person better than an agency does and the pay can be negotiated. Good luck with it.
Don't let anyone guilt you into a decision that isn't what is best for you and your family.
I agree usually the bulk of care falls on one person as is in my case.
My 85yrold father moved in with me in Oct 2019 and having to care for him daily as definitely affected our relationship.
Family members give you their two cents on how it's your duty but none will lift a finger to help.
Aides come in a few times a week but again the bulk of the care falls on your lap.
I for one don't plan on being a full time caregiver for years and years.
Do what is best for your peace and sanity
That's why my motto is: "Those who can do. Those who can't need to shut the hell up". People do have to do what's best for themselves and that doesn't always mean the elder can stay in their own home or move into someone else's. Sometimes there has to be facility placement and no one should beat themselves up with guilt if that's what they have to do.
How to know you have enough help? You'll know that you are are the right track when you and your husband can:
get 7-9 hours of uninterrupted sleep every night
eat 3 healthy meals at a reasonable pace without stress
have "time off" to meet your own health care needs
have "time off" daily and weekly to nourish your soul in activities you enjjoy with people you value.
If you resent his care now, you really will resent it later. You have not seen anything yet! I would seek an eldercare attorney and do estate planning and get him Medicaid ready (if he is not on Medicaid yet) for nursing home placement. This includes POA, a Will, discuss living will (feeding tube, no feeding tube, code status), and pre-planned funeral.
Home care is extremely expensive and eventually will require 24/7 care which will impact your income. Not everybody can get a home job either.
How I wish more parents had the same attitude. Every family has its own dynamic, there is obviously no right or wrong answer other than do the best for you and your husband. Visit care facilities when you have the chance. Talk to the staff, they deal with situations everyday and can give you great advice. Sadly, there is nothing more guilt inducing than resentment towards a parent at the end of their life. You must remember - you have made the brave decision to admit you are hitting a wall. The next step is a plan to place your father in a care facility where you can visit as often as possible but still have a life.
Now you do need to get out every week to run errands , doctors visits, to beauty salon,etc. Call a home care service they will supply whatever you need if it is 4 hours a day or if it is one day a week. So you can get away even to your yard to take care of garden and flowers take an hour or two to the spa, get your nails done. Maybe they could have supper ready when you get home after a day out. Take a walk around the block . Home care will help so you don't get burnt out. Your dad deserves to have your unconditional love and care.
If you cannot get home care then put him in a hospital , a nursing home for a week or a long weekend and take a respite,a trip, a vacation. Enlist your siblings and in laws to come sit with him for a few hours.
I forgot, home care will come and bathe him , read to him, change the linens,etc. Or will do some of your chores. Whatever you need them to do they will do.
Good luck.
But after she died that nearly destroyed me after 15 years of caregiving. I am now gainfully employed and back to the pulse of the living, but it took quite a long time. I never got over mom's death...but I learned to accept and adapt to it because we all die.
BUT...
I have cared for elderly parents in their homes and have burned to a crisp and fallen down, never to return.
I learned the hard way that DH looks on ME as being an extension of himself, and anything I did for his parents was just the same as if HE did it.
Well, he never got on hands and knees and scraped dried poop off the carpet and peeled gross, messed underwear from under the bed or whatever hiding place his father had found. He didn't scrub with bleach behind the toilets and clean carpets that dad had bled into after a fall. He didn't have to get 'nasty' with his dad to make him shower. HE didn't dress open, oozing wounds that wouldn't heal. HE didn't do 2 am hospital runs b/c his father couldn't read a thermometer and thought 101.2 meant '102' and he had to go to the hospital when his fever spiked.
He didn't live with 46 years (and counting!) of his mother's hateful, nasty attitude towards me. HE wasn't required to stand on a small throw rug all during a visit because she didn't want me to sit down.
I did all this, and much, much more because I thought that's just what you DO for lo's. My attitudes have shifted 180 degrees to the opposite.
My FIL died, so caring for him, while exhausting, only lasting really hard for about a year. His mother will never, ever die, so she's in our lives at some level forever.
I simply went 'lights out' with her. I don't speak to her nor see her. I resent that she treats my DH like a stupid child and yells at him over things he did as a child. So he climbed the giant willow tree when he was 5? He got down and was fine! She had the tree cut down so he couldn't climb it again. Duh. There's a couple more trees in the world, lady.
I don't do much for my mom. I have a lot of resentment towards her over her being a pretty poor mother and much worse grandmother and a completely checked out great grandmother. I did way too much for her and now I do nothing. I'm not happy with this 'middle of the road' but I cannot change it.
Feeling resentment towards someone you 'should' love is such a mixed emotional mess. I just adored my grandparents and thought that was what being a g-parent was like.
It can be, certainly. But it often isn't.
If you are giving too much, it is time to reassess & make changes.
If it gets too much, don't feel guilty putting him in an AL if he can afford it. My brother and I both felt that our responsibility to Mom was making sure she was safe and cared for. I did that.
Our lives change drastically when we allow loved ones to move into our homes.
Even if a family is fortunate enough to have outside help, it is still difficult to achieve a healthy balance.
Caregivers will eventually burn out if stretched past their limits.
Many caregivers do eventually place their parents in a facility as their needs increase.
The bottom line is even though there will be ongoing challenges in meeting your parents needs if they are living in a facility, at least the load will be much lighter than if you had the entire situation in your home.
I understand how difficult it is to decide what is best for your family.
I cared for my parents too.
I did a lot for my dad but it was a lot easier to care for my father because he was not living in my home.
It became very difficult to care for my mom who lived with us for 15 years in our home.
I felt the weight of the world lift off of my shoulders when I no longer had the full time responsibilities of being her primary caregiver.
Please do not ever believe that surrendering caregiving in your home is a lack of love for your parents.
The most important thing is that they are receiving proper care.
You do not have to be the person doing the hands on care.
If you feel you can do it, great. If not, look into Assisted Living or Skilled Nursing for your dad. He's still pretty young at 73 so you can be looking at a lot more years of care ahead. Be honest with yourself, and don't let GUILT drive your decision. My mother has had a very good quality of life AND care in Assisted Living these past 6+ years, and I believe her life has been extended as a result of the excellent care she's received by the attentive staff.
If you choose to keep caring for your dad at home, you may want to look into therapy to help you develop some healthy coping mechanisms to deal with the stress.
Wishing you the best of luck moving forward.