There is nothing wrong with the nursing home other than “it is a nursing home” but he is my sweet sweet dad who has never had a bad thing to say about anyone in his life and it’s hard to see him having to live there when he doesn’t want to be there. He doesn’t really complain much but I see it in his eyes and his half hearted smiles and I see his health has deteriorated since he was put in the nursing home. His spirit is gone.. I would be quitting my job. I wanted some support but honestly reading over most of the posts it seems like there is not much support. I see a lot of strong opinions about all the difficult horrible times people have had with their loved one. Even the law seems to be against me keeping him home for the fear of having to put him back in the nursing home and Medicaid is telling me I have to document my every move and have a receipt for the McDonald’s I bought him on January 2nd 2009. It makes me cry. I realize what I am walking into and I know it’s gonna be hard and I won’t be able to handle it but there is that little voice in my head that says he is 87 and he is my daddy and maybe I won’t be able to handle it but maybe he doesn’t have much time left and maybe I will be able to handle it. Don’t get me wrong I do appreciate all of the advice you guys give but while talking about the bad times it would be nice to hear about the good times. Were there not any rewards? Were there any good times you had being a caregiver?
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!
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.
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 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
Am sure he knows of your love. Trust your own choices, no one but you know the circumstances. Best of luck, and hugs.
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.
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.
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.
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.
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.
I'm on my second caregiving stint. My husband was diagnosed with dementia in May of last year. I'm watching how he is declining. As well as how much I can do for him, by myself, then when to get in home help, and when that will not be enough, time for either assisted living or memory care. I know he's trying so hard to not be a burden, but....that can last only so long and he will have to have professional care. I think you posted that an average of 35 people a week take care of a patient in assisted living. I hope more folks will realize that being a health care hero takes a large group of people to get the job done, and a single person such as myself, can not begin to have the depth, range, expertise, training, skills, ability to stay awake for 9 days straight and remain sane and lucid, can change stinky Depends, make the perfectly balanced meals, run errands, consult with another Doc on med changes because the patient now thinks they're talking to dearly departed family members or Elvis, their hallucinations are better than real life or the Tee Vee, as well as just being....a dementia patient.
I can not "do it all". I can not, will not "multi-task" myself into an early grave, because the current society thinks unpaid family caregivers are able to be their own, self sustaining health care system. Yet, society does not care if we die on the job......nope, not gonna happen here. I'm smart enough to know I'm too dumb to take my husband's care giving to the next level, and that's ok.
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 ..
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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!
Nursing homes aren't death traps and they don't decide when someone should die. What's hard is accepting when it was their time.
OP's father is not being neglected or abused. Believe it or not, there's thousands of seniors who are neglected or abused in their own homes.
If you want to hear about good times, I have them. Only one bad time when she had a UTI, but she was sick.
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!
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.
Before making your decision take a moment, get out of the emotional side and look at the logistics.
Think about -1) how you will adjust your lifestyle—it will change (home, family members, work,); 2) will you need additional home care assistance; 3) how will you assist dad with his personal care (bath, shave, etc.).
I don’t know your spiritual beliefs but, in my belief system, I ask God for a clear sign on what to do when faced with monumental decisions.
That said, I was a walking zombie. I had days of anger and resentment and loneliness and sadness. Expect them and ride those waves. Employ some help wherever you can, local private aides, Medicaid aides, friends & family that can help give you some respite. I must say my husband was 101% supportive and loved my Mom too.
My Mom passed exactly one year ago on Feb.23, and mostly all my memories of her are good ones. Memories we shared at family events, sitting outside together, playing music, watching tv, joking and even enjoying a few short vacations. She was the best role model I every had and I'm happy I was able to "give back" by keeping her in her own home.
You don't say what your Dad's limitations are. I wonder if you can take him out for a trial weekend or even one weekend each month? This would give you a better assessment to see if you can manage your Dad's needs for the long term.
If you feel you can and want to do it, I say go with your gut and take him home, knowing full well there will be many challenges for an unknown amount of years. But also knowing that you can & will meet each challenge as it comes, and will act accordingly. If that means a facility again later down the road, so be it.
I wish you strength and courage and God bless your loving heart and your sweet Dad.
Gram was easy-going and told the funniest stories - some were even true.
Having both my mom and Gram visit us for every Thanksgiving no matter where the military sent us over the course of 31 years.
I cared for Gram a couple of times for a week so my mom could go on a vacation. I would have done this more if mom would take more time for herself.
The hard part - it is committing to a new way of life: changes in schedules, a lot more trips to see doctors, no "alone time" with spouse or friends, and usually increasing disability or illness. Some seniors are easy to care for - like my Gram - but some disease processes are hard to manage 24/7/365.
Most the the people with the "horror stories" either have seniors with difficult health conditions or a lack of other people helping. I always recommend that there are at least 2 other people involved in caregiving in case you have a health emergency.