I came to this site hoping to find some support in taking my dad out of the NH and caring for him myself. Were there any good times you had being a caregiver?

I think it depends on the relationship between the caregiver and the LO.....which in turn depends a great deal on how easy the LO is to live with/care for. My mother has been living with me for 4.5 years and it hasn't been easy, mainly because I didn't want to be her caregiver but she pleaded with me years ago to never put her into a facility and I promised that I wouldn't. So here we are. I was never particularly close with her for various reasons. She was immature, she pointed out my flaws and compared me constantly to my over-achieving cousin. She favored my now-deceased twin brother over me. When the time came for me to bring her to live with me, I didn't want to do it but I had to honor the promise. She is loud and noisy and stubborn and very non compliant. She will not stop hollering and fussing and whining until she gets what she wants. I would give almost anything to have a kind hearted, sweet and loving mother to care for. However in the end I will have no regrets because I know that I am fulfilling my promise to her and doing the best that I can.

Such a hard decision. I think it depends on the personality of the person who needs care. It's very hard to care for someone when they are compliant and easy. Almost impossible when they are difficult and "mean". As AZ progresses there are many people on here who have said their once very sweet natured parent became unmanageable or abusive. It's not them, it's the disease. But that doesn't really matter when you are in the thick of it. Personally, I would visit more and keep him where he is. You need a life to go back to when he passes away. I know too many people who have given up everything to care for someone and then when it's over they are essentially starting over, financially, socially, and mentally. I'm in a situation where my father had a stroke and is having memory issues. He has improved a bit. I love him dearly. But in the state he is in now, lashing out, angry, yelling, and just plain difficult. No way I can live with him full time. I contemplated moving across countryto care for him but for now I'm staying put. We'll see what happens with time. I was planning on relocating in the next couple of years anyway and live in an in law apartment on his property. When I envisioned that move I thought it would be to be close and help out. I didn't see this coming and now that it's here, I am rethinking everything. Such hard choices we face.

You do get a peace of mind when you know they are safe and living their last days surrounded by love ones. Caring for them is 24/7. And watching their decline is heartbreaking. I like the suggestion of caring for him over a weekend. Get your feet wet to see if caregiving is for you. Just keep in mind that a weekend is only a small glimpse.

Hello PiaAnita
I just want to share my experience with my mom, she was showing signs of Alzheimer’s just a couple of months before Covid hit the world! She refused to go to. Dr at that time and my sisters and I didn’t insist because we were in denial, we couldn’t believe that my mom who was pretty healthy, who use to drive and travel by herself could have Alzheimer’s! 
Exactly at the first week of the lock down her condition went from being forgetful to full blown manic attacks, refusal to eat or bathe or sleep, she use to open her drawers to check if anybody stole her stuff continuously the whole day with a bang bang bang sound throughout the day and night , she wouldn’t stay still or sit for a minute and she didn’t recognize any of us, she was mean and unbearable to be quite honest, it was a nightmare because first we were shocked as we are a tight family very close to each other ( forgot to mention that my mom used to live with me and 2 sisters) second it was total lockdown. 
Hospitals at the time were only for emergencies so I just googled Alzheimer’s dr in my region and found a number that I called at 9 in the evening! The dr in brief was a God send! He was very compassionate and understanding, he told us that most Alzheimer’s cases deteriorated crazily with the lockdown anyway turns out my mom needed to be medicated and after months of trials and errors we final found the right dosage/ combo for her. 
What worked for us, a strict routine, when to wake up/ shower/ eat / snack/ nap .. the routine played a huge role in our life. 
Now she’s like a toddler, we put music daily and dance and she has those cute moves, we compliment her clothes and literally everything she does and she’s so happy. 
It’s not all good or all bad but it’s a good balance and thankfully she’s comfortable and happy surrounded with familiar faces. 
For me and my sisters putting her in a nursing home wasn’t even an option even during the toughest of times as we’re Arabs and in our culture we don’t do that even though I totally understand and will never judge anyone doing it. 
So stay strong bad times will come and go as this is life, but the times you have with your father are precious so find your own routine and what you’re doing is admirable. 
Ps: Send my love to your father, who sounds exactly like my sweet late dad that passed away when I was a teen.

You have to know what you are facing....the DEATH of your parent.
Depending on what health condition he is facing it can be an easy or a
hard caregiving experience.
Dementia? you watch as your loved one forgets you, forgets themselves, and the brain damage can cause sudden and violent shifts in personality.
You have to be able to wipe and clean them in the most intimate ways...could you do that for your father?
Luckily my Mom was the main caregiver for my father and took care of many of the intimate aspects. While my nephew who was a nurse that would give him baths.

BEFORE my folks moved into my home we did the whole lawyer, insurance, and doctor things. My Dad has since died but I'm still caring for my Mom who has Vascular Dementia and so far, she's forgetting me but is still the nice sweet woman she's always been (with the natural b*tchiness of humanity, lol)

My major monetary earning period has been completely decimated. My future is OK instead of bright. My friendships have fallen off due to my not being able to be spontaneous. Even a "let's see a movie" is impossible without pre-planning.

BUT...I'm the most important person in my Moms life and her only tether to any past she might still remember....even when she's not remembering who I am, she knows that I am the nice lady who takes care of her.

Would I do it a different way? NOPE.
Has it cost me anything? YEP!

PiaAnita, can you bring him home for a short visit?

I cared for my mother for five years and would do it all over ten times if I could. She had dementia. She was very easy to care for. I never told her she was dying. I turned the den into one big bedroom for the two of us. We did a little traveling until she was not able any longer. She was my mommy and she raised my by herself and gave me everything I needed and more. When the time came, it was my time to return the favor. She was all I had.

If you want to hear about good times, I have them. Only one bad time when she had a UTI, but she was sick.

PLEASE GET HIM OUT OF THERE!!!

They do not care about people. It's all about money for them. So many are neglected and abused. Your father is better at home! I do not know where you are from, but many states have programs that will help you financially so that your father can stay at home. We have several here, the best one right now is IRIS. He can have say over his own care. He can hire family members like yourself to be live in care or just one of the caregivers.

That is what I am doing now. It provides us with the money we need to get by and NO you do not have to account for every dime! That is ridiculous. If you are helping him with his social security, it is usually a yearly report and it does not have to be down to any such detail. They are just trying to scare you.

It is so WONDERFUL to have my loved one at home. She is so happy and yes it is a lot of work, but just knowing she is ok and that she has some say in her own life makes such a huge difference.

I have seen the other side too. Many of these nursing homes are death traps! They killed my sister by dehydration. They decided it was time to die and to hurry her on her way ...they removed all food and water. I did not know what was going on, but knew something was wrong when I called. They would not let us see her. When I asked how she was eating and drinking I found out they were not giving her any. I tried to get them to rehydrate her, but they refused. I found out too late to stop them.

Please get him out of there and let him know you will be there for him when he needs you most! God Bless You!

I read a good amount of the responses to this question .. It sounds like there are some real angels walking this earth … God bless them …
Think long and hard .. In anyone’s late 80’s I’m pretty sure we all loose some of our spirit and our health starts to fail, no matter where we are . There are pros and cons ..
For me it has been the long good-by with an unknown expiration date . I’m not sure you really do know what you are walking into . 24/7 is different than anything you have ever been thru … There is help , lots of it but it is costly . Make the decision that is right for you and your dad. What has been helping me is a CareTakers group and a therapist I talk a few times a month. It’s a truly selfless thing to do . I am not one of the angels. I have no warm happy stories. I have learned a lot about death and dying and even more about Neurodegenerative issues but neither of those things have made me happy .When I know I am no longer able to keep him safe there will be a change of where he lives. My prayers are with you. Maybe you are one of the angles . Take care of your self so you can take care of him ..


……

I've been a homecare provider for almost 25 years. Many of the elders on my service should have been in nursing homes. They weren't though. If you can find a reliable support system and in-home caregivers you can depend on, then take your father out of the nursing home if you want to try having him at your house.
Medicaid will pay for some homecare services, but you will likely also have to hire additional private-pay caregivers. A couple days a week at the senior center or adult day care will be necessary for both of you. Dad will benefit from getting socialization and you will benefit from getting some respite.
Sure, there are good experiences with caregiving. I've had lots of good times with elderly clients. Not all of them were invalid or completely out of it from dementia.
I was a companion to one old-timer with bad eyesight because he couldn't drive anymore. Every Tuesday and Friday afternoon I took him to the VFW to drink beers with his WWII buddies. Those guys were great and so were their stories. I had another client who was an elderly woman who really didn't need any care. She lived alone and wanted someone in the house on the days she took her showers and someone to take her out a couple times a week. We went out to lunch twice a week (which she paid for) and then mall-walking with her girlfriends who were cool. I got paid to do this!
There are positive experiences with caregiving. You need to understand that your whole life will be changed if you move your father in and become his caregiver. Things people take for granted like running a simple errand will have to be planned in advance if your father has dementia and can't be left alone. You will have to either take him with you or arrange for someone to come.
You will have to plan for things such as your father developing mobility issues or incontinence. Is your house handicapped modified in the event that your father becomes wheelchair bound? What about hygiene maintenance? Would your bathroom be safe and accessible for him?
If you quit your job, how will you support yourself? What happens if your father lives another ten years? It's possible. Who takes over your father's care if something happens to you (God forbid) or there's an emergency of some kind and you can't do it?
I'm not trying to dissuade you from becoming your father's caregiver in your home if it's what you really want to do. But please, think long and hard about these things before you make a decision to take him out of the NH.

Something to consider --

While those activities at his place seem childish, he is getting out among others and socializing somewhat. When he comes to live with you, that job will be 100% on you all the time. If you need to get something done around the house or have to go to the grocery store, he'll be neglected. He'll start taking a lot of naps, then he'll only be awake for meals and maybe to sit and watch TV together in the evenings because you can get a lot more done not having to entertain him or doing everything at his speed (which will be like slow motion for you).

You'll find yourself sleeping with one ear cocked to listen for him getting up, because you don't want him to fall. Any fall, and especially one where he might bump his head, no matter how slightly, will need a trip to the ER, because you don't mess around with Warfarin or any blood thinners. Those falls can lead to a massive brain bleed, and if you ignore them, he'll wind up dead. That's what happened to my FIL, because he was too stubborn to get checked out. He was dead 24 hours later.

This was my dad caring for my mom who had vascular dementia. My mom never had the brain bleed, but my dad did the caregiving, the housekeeping, and all the grocery shopping while he tried to care for her. She was happy to sleep the day away, but it also contributed to her mental decline. Stimulation is vital for dementia patients, especially if they are also hard of hearing or can't see well. Their brain just shuts down.

my dad never would have put my mother in any kind of a nursing home, because he felt he was honoring his vows to care for her in sickness and in health and he adored her. However, I don’t believe that it was really what was best for him nor for her. As it happened, he ended up dying of cancer just six weeks after being diagnosed, and I had no choice but to put my mother into a nursing home. And I moved her again some months later to a memory care, and relatively speaking she flourished there because the focus was on mental stimulation and socialization. She went from sleeping 16 to 18 hours a day to not taking any naps during the day. There were things to look at and music to listen to, and even though she, too, thought some of the activities were ridiculous, she was around other people and that really mattered.

There's a reason why a nursing home --and memory care in particular -- have teams of caregivers. It’s a huge job and often too much for one person to do effectively without suffering negatively themselves. Being on duty 24/7 is extremely hard and not sustainable, and ultimately both of you will suffer for it. You are also throwing away your career and your own financial future, including retirement savings, and that's something to be considered because the day will come when your dad will no longer be there and you need to pick up your life again. It isn’t as easy as you think.

I never imagined I would put my mother in a nursing home, but I lived with my parents for two months while my dad was sick and cared for both of them. It was quite an eye-opening experience, and after that time I knew I could never do the job for long. My parents were delightful people and no real trouble, but it was a massive job nonetheless. After I placed my mother, my main job was simply to love her and be her daughter while other people did the heavy lifting with medications, incontinence issues, changing sheets and linens, and cooking and cleaning. I know it isn’t what my mother would have wanted nor was it what my dad wanted, but in those two months living with them I learned what my limits were, and I was pretty well at the end of them. I'd lost 10 pounds, I never slept more than four hours at a stretch, and I was running mostly on adreneline. That is unsustainable.

Yes, I cherish the time I had with my parents during those months I was there, but just as it is with raising children, you have so much else to do that you can't always just enjoy that time.

Loopyloo,

You are correct that there are thousands of seniors being abused and neglected in their homes.
They are not however paying $10,000 and $15,000 a month to be abused and neglected in their home. This is about what a rock-bottom quality nursing home costs a month in my state.

Your dad sounds like my dad. Sweet, outgoing, never a bad word for anyone. I came to live with him (he gave me his house) after mom died. He was 84 and pretty well able to take care of himself except that he doesn’t cook or clean. I can tell you I didn’t get along with him all that well growing up and we butted heads a bit in the beginning. I continued to work and was blessed with a job close to home in his later years so I could do lunch for him. I am so glad I’m able to participate in a VA program called Aide and Assistance. We were approved just as I lost my job at the beginning of covid. Dads monthly income is now paid to me as his caregiver. He also receives a VA pension to pay for his personal expenses. It’s also allowed me to upgrade the home where it pertains to dad. He has always had many interests and I encouraged them throughout the years. He made new friends and enjoys his life. He’s now 101 years old. His health is good but of course there are challenges. He has a great aide that helps me (VA paid) but yes it’s tiring. Some days are a real struggle. But I wouldn’t have missed these years with my dad for anything. My heart has changed toward him so much. One day he won’t be here and I will have lots of memories. I wish you well as you make your decision. I don’t regret mine.

I liked Beaty's reply. Makes sense. When my mom was in nursing home, her 1st roommate's husband took her home for couple days a week, then came to help her with lunch and dinner when she was in nursing home. What an amazing man! He had other family and his friends to be with too, so I think it worked okay for him and his wife, who was not even able to talk. Still, it was heartbreaking watching them. I stayed with my mom every day for an hour or two to cheer her and help her with meals, put on music, wheel her outdoors in the courtyard to see flowers and trees. I wanted so much to take her home, but her house wasn't set up for her care and would have been impossible. I did find a small end of life home for her though and got her out of the nursing home, which was a relief. If your dad doesn't qualify for Hospice, it will be hard to get all the equipment, help, and support you may need. It's such a tough situation. I feel for you.

Hi, i am taking care of my half brother who has Huntington’s disease with dementia. It’s a lot of work but there’s good moments every day. My frustration comes from having to deal with annoying social services that keep asking what I need all the time and have nothing to offer me or with doctors who tell me they will do something and aren’t doing it. I don’t really have long term frustration dealing with my brother. The good moments are when I see a glimpse of understanding , a glimpse of the old self or a moment where he likes something or seems in good spirit. It’s little things every day.. today it was him wanting to add salt into his soup , something he doesn’t do usually. I also had the joy to wake up late today , he’s not doing good with his sleep schedule so it’s a blessing. I am much younger than my brother , i am still in my late 20s and I still took a break to do it. I think it’s the best decision I have made.

You need to be ready to be honest with yourself about your limits and already have a good acknowledgment of what you’ll be able to deal with and be ready for the limits to move after the bridge has been crossed. I used to think I wouldn’t handle diapers but I do.

i would advise setting boundaries with social services early and telling them you’ll ask for help when you’ll need it or might feel like they want to decide everything. I am not in the USA so I don’t know about Medicaid but I would advise to be ready to get deceived by healthcare and put the bar low so when it goes well you’ll be real happy about it. Keep every receipt and put a copy into your computer because ink fades and it becomes a problem if the person who handle your case is a pr*ck.

I would also tell you that you think you’re ready and you think you know what you’ll walk into but you don’t. There will be nights where he won’t sleep, sorry not nights, weeks. I’m just finished with a 8 days of nightly screaming with 2-3 hours of sleep as he is scared or he forgot how to sleep. Problems will come up that will have no solutions and you will have to accept to wait until the issue is replaced with something else. I advise to have someone to confide in because you’ll be frustrated a lot at times.

Personally I think it’s worth it and rewarding , i feel like i am doing a service to society, i feel like i am offering the best solution, that i am doing what my brother really want. I have to feel it in my heart because society isn’t very rewarding of what i am doing , everybody think it’s strange , even my own personal doctor doesn’t understand. The only ones who will get you are going to be your dad’s doctor if he’s good, a few healthcare provider and social workers( not all of them will understand sadly) and the people who go through it.

If you think you can do it I say try , even if you have to put him back in nursing home if you offer love and a good environment any doctor or psychologist will tell you it’s better for them to be at home.

I have no attraction to nursing, I have a strong gag reaction to bodily fluids and I am too disabled to lift anyone, but I know I can be a supportive visitor with ideas about bringing back happy memories from another era (which is where many dementia patients live). I am planning to live very near the facility and visiting nearly every day if that's possible. I can easily imagine that many relationships deteriorate and people can get frustrated and mean in response to repetitiveness.

I will schedule a meditation after every visit to help me endure: I have the tools to be a positive visitor for my loved one, but I have no nursing skills and don't want to learn any. Much respect to our medical community who are candidates for sainthood.

PiaAnita: My caregiving had to be done from out of state when I had to leave my family, my home and my life to move in with my late mother in her own home since she was adamant about not leaving. That was very difficult since I was already an elder myself. You should think long and hard about your decision before you make it, e.g. are you going to be able to obtain another job after you quit your present one?, are you sure that you are able to meet the medical needs of your father if you bring him home?, et al.

After reading your post, I find you one caring daughter, and your father is blessed to have your love. Do what your heart tells you, no one lives forever and once gone you have to live with your decisions.
Am sure he knows of your love. Trust your own choices, no one but you know the circumstances. Best of luck, and hugs.

you can not do it alone. i helped my dad for several years, he passed at 89. he was stubborn with a variety of things, this put major stress on me. yes he is your dad and yes you love him but you need to love yourself to.. look into family, or nurses or whatever you can to help you so you are able to help him - just not every minute of every day! trust me i'm telling you for your own good! you are a good person and a good daughter so do not feel guilty.

HI PiaAnita
I know exactly how you feel, only I have my sister fighting to keep him in the NH. And there is no supporting help, I emailed safeguarding last week because the carers are keeping my father in bed when he wants to be sat up in a chair, but was told no because they were short staff. Then when they did put him in an armchair that he had not been assessed for with no lap belt on he took a tumble and had to have few stitches and alot of bruising
I emailed safeguarding to let them know and was told to contact my fathers social worker ( who has lied so much now) she is not trustworthy, because they were busy and didn't have time, there is no one to defend upon. Its all down to money at the end of the day. My father is 83 years old this year and I can't grant him his last wish to be in bungalow to pass away.
Stay in touch Alison

Go for it. You would not know if you can until you try. If you need help for day or night activities, get help. I like your attitude. According to your dad's temperament and any ailment he may have, he may not be as challenging as some. After all is said and done, it is important for your peace and wellbeing that you have no regrets

I think I answered this question previously. I quit my job and moved in with my mother to care for her during her sickness until her death. Every minute of our time together was very rewarding. She was easy to care for and never gave me a minutes trouble. She's been gone 11 years and I would still be caring for her at home if I could. I miss her desperately. She was all I had.

Spend a couple of full days at the NH with dad. Look to see what he can do and what he relies on others to do (and could he have done those things on his own). What you see is what you are taking home. Can you manage it? It's possible that some things they do for him, he really could do himself.

There is no law that prevents you from taking him home for fear of returning to a NH. It happens all the time - people have a setback/injury, go to NH and then go home. It's cheaper on Medicaid claims (NH bill) for him to be at home setting than in NH.

In reference to the McDonald's receipt, it is not that detailed. Use a debit or credit card for all of his purchases and just note what each purchase is - food, medical, etc. What Medicaid is looking for is him giving away money. Gifts create penalties where they will not pay for NH bed for a certain amt of months. In Texas they ask you to explain expenditures of 200 or more. So the record keeping is not something that is overwhelming. And the bank acct limit is 2K whether he is in or out of a NH.

Can you afford to quit your job? Assuming with Medicaid, he is on SSI so he would be bringing very little money into the household to live on. There would be very little in increase in cost to run your home, so use his money to help yourself out with something like an aide to come a couple hours while you get out (if he needs someone with him at all times) or for personal items he might need. Perhaps a flat amount to pay toward utilities or rent/mtg.

I say, give it a go if you think he can walk, get to the bathroom, etc. If you know he needs lifting - you will need help for sure. How much you can afford to pay for help will determine if he is suited in a home situation.

I cared for my dad 30 years ago. I also cared for a dear friend last year. Here's what I learned and the comparison of then to now.

1. I understand your feelings. I looked at nursing homes and couldn't send my dad there. He was still mentally active and vibrant, just dying of cancer. I took a leave of absence from my job and moved in with him for his final months. I had a good relationship with my dad so we got through the intimate stuff with a sense of humor. I was full care 24/7. I didn't realize how much effort, patience, time, energy and strength it would take. After one month, I was exhausted and we had a fight. I needed some rest, so my brother agreed to come for a weekend and I went to a hotel and mostly slept and rested. It was a great weekend for my brother and my dad. I came back refreshed. My sister is a RN so she taught me what I needed to know. It was a wonderful time for me and my dad. I will treasure it forever and don't regret any part of it.
2. I found out this past year that Hospice is MUCH better than it used to be. The experience didn't drain me this time because there were 3 of us plus Hospice. Kindred Hospice is the best. One of us lived with my friend 24/7. One of us (me) came for 2-3 days a week so the 24/7 person had a break every week. I also took care of all the paperwork and finances so the 24/7 person could concentrate on care. My friend was bed bound for 9 months before she passed. Hospice provided 2x per week RN hospice visits and 3X per week care visits which included bathing. The Hospice nurse also cared for us care givers and that helped a lot as well. We also had someone who was willing to pay for full time care for 8 hours a day. Therefore the paid care stayed with my friend while the 24/7 person took care of cooking, cleaning, medications and concerns during the day. Often the 24/7 person was up during the night with my friend because of sleep and pain issues, so sometimes the 24/7 person napped during the day while the paid help was there, or just took a walk. I managed the shopping.
3. If your father is not on Hospice but just can't live alone do to paralysis, you will still need help. If your father has dementia, then you definitly will need help because he may not be safe to be alone even for a quick trip to the store.

I hope this answers some questions for you.

Thank you so much to everyone who has replied. I had a long talk with my dad and he surprised me. My dad said he loved me but wanted to stay where he was so I could have some time away from having to do so much. He says I do too much all the time. He said he is okay. I visit with him every day and I did find out that I could take him home for the day whenever I wanted. So that’s what I am going to do this Saturday. I know that he will be back in the nursing home in time to get tucked into bed and I can go back home and relax and get some sleep. This is typical of my dad to put me before his own needs and I will cherish the little time I have left with him.

I read everything everyone responded and I want to say thank you for sharing your stories and for getting me through that incredibly dark moment. I pray that one day I will be able to do the same for someone else. Thank you again!