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?

it depends on your father's personality and behaviors. most people come here looking for support in dealing with difficult personalities/behaviors, like refusing to shower, being up all night and sleeping all day, constantly wandering, and being suspicious/aggressive/nasty. and many of us are dealing with parents who weren't so nice before the dementia, and now it has gotten worse. if your dad is indeed sweet and does not display any of those behaviors, it will not be as bad as many here have experienced. it will be very difficult and isolating, but not intolerable the way the above behaviors are.

I cared for my dad at home for 8 years. He was mentally a 3 yr old. Some days I cried, needed extra help, and wondered if I had even made the right choice. As time progressed, it was evident that I had made the right choice. Advantages of home care, I responded immediately if care was needed, such as sores. They can get bad fast. Make sure enough protein is in diet, wounds are taken care of properly(Bandages would tear my dad's skin, so I used manuka honey (only this type) to attach bandages to his skin.
Caregiving is alot more than feeding and cleaning. It's planning, preparing, nurturing, researching, trying/making new things/methods/products. I'm glad I decided to care for my dad in my home. Each individual case is different. My prayers are with you during this time.

I answered to a previous question as to taking care of a loved one out of guilt or the way we remember being raised. All of that aside, you won’t regret it if you are able to take care of him without needing a lot of medical equipment etc. My 87 yr old dad lives with us and it’s been seven months. It’s a big commitment and my husband even said to me, we’re in it now. We need to make the best of it. We have my siblings visit, which can add to my load but often their support helps me more than expected. I don’t know your situation but getting off one day a week has helped me. My husband and I coordinate our schedules so it happens.
Here are the highlights:
We say Grace every night and weren’t as regular with it until my dad moved in.
We hear family stories we wouldn’t have heard otherwise.
I get to say goodnight to my dad every night.
We watch the Game Show Network and my dad thinks I’m a genius! (My adult children would laugh, knowing he’s so impressed with my knowledge!😂)
My dad shared meals with my family and it includes three great grandchildren that fix him lots of pretend meals.
The challenges:
I need to be home a lot more
I need to repeat things a lot more
I need to make sure every meal is either easy to prep- breakfast and I cook almost every night. This has turned out to be a better food choice for all of us.
I HAVE to creat time for myself. I choose to workout every morning. If not, I would get depressed or sluggish.

I hope this quick note helps. Send me a note if you want to discuss more. I don’t regret anything. I’ll be honest, my dad doesn’t want to live forever and he hates to be a bother so it’s a loving atmosphere. All situations aren’t the same.
Best to you on your decision.
KEPBEL
“Middle Child”

I would be sure to arrange for some caregivers to help. You will need rest and breathers, and situations come up when you must leave. Good caregivers are hard to find and expensive. Full time is not necessary, but reliable and warm and dedicated is. So do try and put that in place before you make such a move. I believe that can make or break caring for someone in your home full-time. I might add that I hear very good things about adult care homes as opposed to SNF. Just more individual interaction and relationships. You might investigate that as well.

This lovely woman’s blog helped me with her humorous take on caring for her mother at home before she passed. You might enjoy reading some of her blog posts:

https://www.stumpedtowndementia.com/

Hello,

It is so scary to take on the responsibility. Once you jump in with both feet you'll be glad you did. I'm 4 months in caring for my dad. We set-up the dining room as a bedroom. He has 2 walkers/ 1 wheelchair/cane. We have 1/2 bathroom downstairs in the Kitchen; not far from his space. He has in-home dr. visits which is a life saver.

My dad is visually impaired. He has CHF and he's frail.
I take his blood sugar every morning, weight him, prepare breakfast, medication He's on a lot of medication, prepare his lunch, lay out his clothes and encourage independence for those things that he can do himself.

We argue. We laugh, I apologize a lot for sometimes being short with him. He says he understands etc. My husband and I shower him twice a week, give him a shave etc. We took him to Chincoteague this weekend. He had a bout of sundowners so we only stayed one night. he called out all night. He was in an unfamiliar hotel. We went home the Sunday morning. lol
We laugh about it now. I wasn't prepared for it but you learn to go with the flow.

Please be sure to have all you legal documentation in place. It can impede your ability to fully care for your dad.
I found wonderful resources with the Jewish Community Center and Jewish Family Services. The plan is to have dad go out two days a week with a companion to the Jewish Center for exercise, socializing and potential crafts or swimming.

My husband and I both work full-time and dad is home. I have a monitor so that I can see/hear him from my room at night and during the day while I'm at work. This helps.

If you have any questions, you can message me.

Love, Light and Kindness
Rita

Get involved where he is at now. Set up a schedule (1! Hour?) to visit him everyday for at least two weeks or a month. (Especially on the weekends when facilities are short staffed)

It will give you an idea of the commitment that is required.

I see that you’ve gotten a lot of reply’s but I’ll add mine. I cared for my grandfather for a year and half after my grandma passed. He was pretty independent but has macular degeneration. I quit my job.

I enjoyed my time with him, but I felt very tied down at times too. I could only do things at certain times, no vacations, and if I stayed away too long I felt guilty.

I knew my line was helping with bathroom/showering. My grandfather has a lot of pride and did not want me doing that. He didn’t even want walking assistance. So if you have a line you need to figure out what it is.

Last month his dementia went from 0-60 and he had a fall. He became very unstable and randomly incontinent. I don’t have any help and I knew I couldn’t do it on my own, safely. It broke my heart though, and I wished for my old life of taking care of him back, even with all the caregiver stress.

I have mixed feelings now. I wish that he would’ve move to AL when he was still with it, I think those silly activities could’ve helped his brain, maybe the nurses would’ve noticed the dementia signs more quickly than I did.

Your dad is likely getting more support and SN than you can offer. However, that doesn’t mean you can’t do a good job.

Ill leave you with lots two things, if he’s a Vet you can get a few hours of help for him for free. Before you make this choice, try and decide how you will feel if/when something bad happens to him in your care. Will you be able to live with it or will you feel (unnecessary)guilt?

Prayers for you, I know this is so hard.

I have been caring for my 78 yo mom with mid to late stage 6 Alzheimer's for 5 months. It has been hard, more mentally than physically. It is still early in my caregiving journey but I do not regret bringing her here.

It is very isolating at times. I am very fortunate to have a supportive husband, it was actually his idea to care for my mom.

As others have said, there are rewarding moments and very difficult moments. Make sure you know all that is involved. Our heart leads us in one direction when our head is moving us in another.

I hope you have peace no matter the decision you make.

I agree with all the concerns expressed here, plus can you afford to quit your jog? How about your retirement and future health? Can you plan financially for help if YOU need it? God bless you, but you have to carry on after he passes. KBH

Greetings PiaAnita.
There is sooo much to share that is good about caring for a parent. There are, of course, a lot of difficult times too. Nonetheless, the good can outweigh the difficult when you have a plan and a strong self-care program. Self-care is not simple and not always my "go to," but it does work when I do it.
Without going into all the details, here are some tips/findings from experience:
- If you do pursue taking care of your father, try to hire caregivers to help you as needed.
- Reflect on why you want to care for him. Set your intentions and come back to them throughout your time together. It helps me when I remember that my parent raised me and it's an honor, not a chore, to "raise" her now.
- Find humor, sweet moments, memory-making times throughout the time together. That's a huge "this is why I am doing what I am doing" saving grace for me - and my mom.
We've shared a lot of laughs so far - @ mealtime, getting the mail, going for a milkshake at the drive-thru, looking out the window and coming up w/ stories or reminiscing about shared/individual moments. I've cried a lot too - when she's difficult, when I'm exhausted, when I feel like giving up, and when I think of life without her. Of course, I try to not cry in front of her, but it happens sometimes. We share more laughs than tears. In reality, more regular moments prevail. That's okay too. All-in-all, she knows she's safe, respected, and loved.
Good luck.
It's worth it.

I have a couple of questions.
1. Who placed him in a Skilled Nursing facility?
2. Does he need a Skilled Nursing facility?
3. You mention Vascular dementia as well, has he been diagnosed with Lewy Body dementia? (common with Parkinson's)

Whoever placed him in Skilled Nursing facility is the only one that can discharge him, you can not take him out unless you are the one that facilitated the placement. If he is not cognizant he has a POA or Guardian that made this decision. If you wish to bring him home you would have to go to court to obtain Guardianship.

If he is in a "nursing home" or Skilled Nursing facility does he need that or would he do well in Assisted Living?

Last question for you is...
Would it be SAFE for you to bring him home and care for him and would it be safe for HIM if you were to care for him in your home.
And you mention quitting your job to care for him. Is that a wise decision? When I had to begin caring for my Husband I was retired and able to take on that role. I would not have been able to care for him full time if I had to quit my job. I would have had to either place him or hire people to help. Even retired I had to have caregivers NO ONE can be a caregiver 24/7/365 it is impossible to do that and remain healthy physically and mentally.
Because I had caregivers I can honestly say that I appreciated the time I had caring for my Husband there were times I laughed, I cried and I would not have changed a moment. (other than wishing he never had dementia)

PiaAnita, I read through the answers below before posting. You had posted a response to sp19690 that your father has Parkinson's. A friend of mine passed away from Parkinson's last year. His wife was relentless in taking him to exercises and to any activity or doctor that helped him live his life to the best possible. They were honored long-term residents in my tiny town and they received a lot of support and love from us other residents. While Parkinson's eventually took him, his mind was sharp and there were times he could articulate profound comments that brightened his wife's and others' life.

To give you a better understanding of what good times you hope for as a caregiver of a Parkinson's sufferer, have you tried to find a Parkinson's forum and post your question there? Or on this site specifically highlighting he has Parkinson's to give you answers specific to the good times you might hope for (though this post may do that)?

I wish I had a better response for you in your desire to make your father happy as possible. Best wishes to you both.

I understand completely when you say it’s hard to see him having to live somewhere he doesn’t want to be. I struggled with that when dad was in the nursing home last year (sister placed) for six months never adjusting (upset to the point of giving up). Now, I try to prepare my heart (not working) to place him back in a nursing home starting tomorrow (lived with us seven months) just because two siblings love drama and I don't want either of us around that and also because the agreement made with my spouse to care for him here has expired.
 
With that being said, I always did what I thought was best (guess that can get you in trouble) and enjoyed caring for my parents (mom is gone now). Rewards for me with both parents were seeing them comfortable because they were with familiar people and familiar surroundings. In their home, they got to see more of the friends and family they love. In the nursing home (dad), rare visits expect me and my family. Another reward for me was seeing dad’s health improve. I’ve had many good times with both parents and love knowing when something would make them laugh or they enjoyed something we have done together.
 
So, of course, there are rewards advantages/disadvantages. But there is also stress from things being all on you even when help is involved. I don’t think I’d do it if there wouldn’t be help (hospice or home health agencies, adult daycare, etc).
 
I don’t know any other way to say it but I feel there are rewards but also tears, frustration, upsets, sleepless nights, busy days beyond belief especially if you still have others to care for like me two teens, and a spouse.

Anita,
Full time caregiving is not for the faint of heart! When our 87 year old dad had a 3 mo hospitalization that started with a UTI then turned into sepsis, my 2 siblings and I were able to convince hospice that he needed to be under their care. His kidney function was deteriorating. Hospice only keeps until the patient is stable. If not “actively dying” they release to a care facility or home situation.
He was fortunate to have the funds to arrange for 8hr/day CNA care. Due to Covid restrictions, we decided against a NH. It was very difficult, and between the 3 of us, we could only sustain for 2 mo. even with the extra CNA home health care.
We were so blessed to find a private caregiver and so we moved him to her home, which was pretty much a 2/1 patient ratio. He passed 2 mo later!
Looking back, we all decided we cherish the moments we were able to spend with him 1:1.
You don’t mention the level of care your dad may need, or how aware he is of his surroundings. Our dad was immobile, and had to be turned every 2 hours, and assisted with hygiene cleanup while in bed.

Only you know if you can handle it. if you choose to care for him, there will be moments that you will cherish, and reflect on, and you will know you did the best you could. If your choice is a NH, visit often and be an advocate for his care…ask questions…take notes…assist in feeding or activities when you can, and you will still have cherished moments to reflect on when he passes.

Depending on your profession, and your financial situation, you might find it difficult if you quit your job, only to then be unemployed AND grieving soon thereafter.

God bless you, and help you in making your decision. Your heart is in the right place!

PiaAnita, I cared for my mother at home until she died, it worked well and I remain very glad I could do it. I’ll now tell you why it worked.

My mother was 78, dying of cancer. She came out of hospital after an operation that I think should never have been done, and I moved into her unit, slept on a trundle bed close to her bedroom door. Her GP was great, and I managed all her needs. The breast cancer had metastasised in her abdomen, and in the last week she had uncontrollable bloody diarrhoea. She slept in short 4-hour shifts, then we worked together to change her and do whatever else needed to be done. I got very little sleep. I couldn’t work, and I lived off what I had in the bank.

It worked because the time post hospital was only 4 weeks. She had no dementia, stayed the person I loved, and was so grateful that I was there and she was out of hospital. I needed the gratitude to help me cope. I couldn’t have done it for much longer. I was so tired, and so stressed.

Of course she was much more ill than your father is at the moment, but towards the end he will also be suffering physically and his mental state may be harder to handle. Perhaps this post has been unnecessarily graphic, but that’s the way it is for many people at the end.

My suggestion would be that you do your best to find things that will give him pleasure now, and let you both have some good times together. Don’t decide to take him home and try to do 24 hour care, unless you know that it will be for a very very short time.

Do a trial.

I would say ask the NH if you could spend the weekend there as a 'care trial' to see how much care he needs. Stay all day for 2 full days.

If he needs night-time care too, sometimes a 'care trial' can include an overnight stay. I have not seen this done in NHs but seen it in rehab settings, but the principal is the same. Live it. Your heart wants Dad home. Let your head get the facts first before deciding.

Next comes getting all the same equipment set up at home. Ensure you have been trained to use everything he may need ie wheelchair, commode.

Next, bring Dad home for a weekend stay with you.

You may find that this brightens both of you. That this change of scene for him & being close to family lifts his spirits. You may find this makes you feel you are really looking after him. Double win ❤️❤️

Maybe this level will be enough? It is for some people. Then Mon-Fri, Dad goes back to the NH & feels good he is not too big a burden on you. And you get to work, earn, socialise, sleep.

Finding the balance is key. If working full-time is too much, dropping to 4 days or 3 may reduce your work (& wages) but give extra time for Dad.

It doesn't always have to be 100% NH or 100% home. A blend can work too.

Caring for the elderly requires stamina and know-how. You want to do it because you love your father. However, if you lack those two requirements, you will burn out rather quickly. Think twice with your brain, not your heart.

I'm so sorry you're going through this. I can feel your grief and sadness through your words. Of course he's your daddy and you want to do what's best for him. Sometimes, it's important to think realistically about what you'll be able to do for him. Are there any alternatives? My mom was in a smaller board and care home, which was 24/7 care and very beneficial to her.
I'm sorry to say that there isn't an easy answer. I know that look in a dad's eyes - my dad looked the same when he was in the NH for rehab. We were fortunate to get him out to a MC facility for the last two weeks of his life.

I wish you peace during this very difficult time.

Hi Pia,

My mom moved into my home after she retired at age 65. She passed away on 2020 when she was 86.

The last 2 1/2 years of her life, she needed more and more care, which I provided.

While today, I am glad I provided her care at home, when I was actually doing it, I had many moments when I was angry, frustrated and scared to be providing care.

My situation is different from many posters that are here. First and foremost, my mom had CHF. She did not suffer from any sort of dementia, which meant she was always "her" - her personality stayed level until she passed.

I also have a 2 family home. She had her own apartment, so she wasn't constantly in my family's space.

I was also semi-retired; and it wasn't a financial hardship for me to not work once she got so ill she could no longer be left alone.

My mom wasn't a "difficult" patient, so to speak; my biggest complaint was she was somewhat passive-aggressive when it came to her own health, which drove me crazy many times, mostly because I was afraid of being accused of "elder neglect" when she ended up in the hospital due to her illness and her at times seeming disinterest in maintaining her own health.

She was able to do a lot of the ADL's on her own: she could transfer herself, toilet herself (right up until she began to transition while in hospice), feed herself. She needed help with bathing and dressing. But again, that wasn't until a few months before she passed. Mostly the help she needed was with shopping, being driven to appointments, medication management, laundry, housecleaning, etc.

It wasn't really a difficult decision to make to keep her at home. And that said, there were times I resented the hell out of having to give up my life to be here, in case she needed me. For example, I had to make arrangements with one of my sisters to stay with her so I could attend my son's college graduation. I had to go through all sorts of machinations to arrange for respite care for her when my husband and I went on a cruise to celebrate our 25th wedding anniversary. And my mom was willing and happy to go into respite so we could cruise. She was not generally a difficult patient.

If you want to bring dad back home to live with you, just make sure you go into it with your eyes wide open. Please do not over-romanticize it. Being the caregiver for an elderly parent is nothing like raising children, although there are similar aspects. Have a plan. Then have a back-up plan for the first plan, and a back-up plan for the back-up plan. Understand that this will take over *every single aspect* of your life, whether or not you want to believe it. An example: about 2 weeks before my mom passed, when she had gotten to the point where she couldn't be left alone because she was a huge fall risk, my husband had a kidney stone attack. He had to go to the ER on his own, because I couldn't leave my mother alone. It was the only decision we could make, but I broke my heart - because I support my husband and he supports me, and to not be there with him in the ER, advocating for him, was awful.

And if this is going to leave you in a financial bind, because you need to stop work, please think very carefully before you do this. It's not easy to jump back into the workforce once you've been out of the career game due to caregiving, be it raising children or caretaking elderly. If you have already taken all of this into consideration, and feel these are sacrifices you can live with, then do what your heart tells you.

Best wishes. And know your dad is lucky to have you, regardless of your decision.

I can only guess that your dad was put in the nursing home to begin with because it became to much for someone to care for him at home right? So what makes you think that you are now qualified to care for all his needs at home? Do you know exactly what all his care would require of you? Will you be setting up in home care with his money so you don't get burnt out and get some breaks? Are you willing to give up perhaps the next 13 years(yes he could live that long)of your life caring for him, knowing that the older he gets the more care he will require?
Those are all questions to ask yourself, so that you're going into this with eyes WIDE open. Can it be done? Yes it can. Will it be the hardest thing you've ever done? Yes it will be. Will there be rewards? Yes there will.
I cared for my husband at home(he had had a massive stroke early in our marriage and later developed vascular dementia)until his death in Sept. 2020. His neurologist had told me in May of 2018 that I should be thinking about placing him in a nursing facility as he knew that caring for my husband was starting to get the best of me. But I knew that my husband wanted to stay home and so I kept him home, and did my very best to care for the man I loved. Looking back on it now, I'm really not sure how I was able to hang on till the end, but for the grace of God. It by far has been the hardest thing I have ever done in my life, but I also have the satisfaction that I was able to honor my husbands wishes to stay and die at home and that brings me great peace. And that is my reward for everything I had to go through.
I was fortunate to be able to keep my husband home, but not everyone is. Sometimes circumstances dictate that it's just not possible anymore, and we have to learn to be ok with that. Just like your dad now has to be ok that he is in a nursing home. One last question to ask yourself. Do you honestly think that your dad would want you giving up the next many years taking care of him? As sweet as he sounds, I can't imagine that he would.
Just some things to ponder. You have to do what you feel is best for your dad and also for yourself, and only you can decide what that is. I wish you the very best.

The reward I received caregiving was my internal talk to myself during those times. Knowing I was trying to do right by my mom was helpful to me. Expecting people on here to have tons of tales of the good times they had caregiving is maybe asking a lot. Caregiving is tough. You've found that out. Maybe you could start by telling us the good times you are having being a caregiver.

Many people have quit their jobs to stay home & care for their elderly parent(s) at home; some have had good experiences doing so, too. We have one poster here, Cetude, that devoted her entire life to her mother's needs and they were HUGE. Right up until she passed away; her stories are full of courage and would be great for you to read, I'm sure.

Here is her profile page: https://www.agingcare.com/members/cetude
You can click on her Answers to read some of her posts.

Another poster named EarlyBird also cared for her elderly mother in home and did a spectacular job of it until she passed recently. They got along very well, too, and I know she enjoyed her mother tremendously. That's not to say she didn't work VERY hard to keep her mom happy & well cared for, she DID, she also enjoyed doing it, is my point. Here is her profile page:

https://www.agingcare.com/members/earlybird

The big issue is finances; you have to have the ability to quit your job and still be able to pay your bills and not be left destitute after your dad passes, which we DO see here quite a bit. I just read a post here today where that is what happened to the gal caring for her loved one. She's now out of a house, money, and frantic, not knowing what to do or where to go. So you can't leave yourself in that kind of a position either.

It may be a good idea to speak to a certified elder care attorney for guidance before you make a decision. It's always a good idea to get legal advice before making such a big change in your life and taking on an elder with lots of needs, I assume, since he's now in a SNF. Know what you're facing.

In home care does work for lots of people, so I hope it does for you as well, should you decide to go that route.

All the best of luck

Does dad prefer to live with you? How great or small are his caregiving needs? My mom spent four years in a NH and I thought often about how to bring her home. But her needs were far too intense to be done in a home setting. I do understand the desire though. Much depends how the level of care you’ll need to provide, keeping in mind that needs increase over time, and if more help than you will be available. I wish you clarity and peace in knowing the right direction

What kind of care does your dad require in the nursing home?