When is it time to give up at home care?

In my opinion, the reason I told you my story is that you are much to young to be taking this on. It is full-time, non-stop, all consuming, in the best of circumstances. Grandpa is being unreasonable and your children and your husband are your priority. As mentioned, this will get worse and it will be inevitable. You have been doing this for 6 months. Look at the chaos already. Your children deserve a whole you. These are very important ages. It will swallow you and make you old very fast. Unless you want your children to have to take care of you and disrupt their lives at a very early age, place them, use their money (they cant take it with them and any "inheritance" will not give you back the time your family loses). Good luck and come to this site often.

Please listen to both sides of this unwinnable situation. My journey with my parents began when I was 50. I was working full-time but my son was married and out of state and my siblings were either sick or too far away to really help out so I became the logical main caretaker. About 4 years into it my health problems with my back became too much for me to work and take care of them so while I fortunately qualified for disability it cut my pay over 50%, without insurance, and no other income. My mom and I tried to handle it ourselves because it was always understood that if one got sick they wanted to stay home if possible, until death. I felt honored to do this for them, but now, after 67 years of marriage, my father is in the very late stage of ALZ, needs 24hr care and we have decided to place him in a home. It is heartbreaking. Through the years there were times when we considered placing him, but my brothers kept my mom feeling guilty for the "he wouldn't want you to spend what he built his whole life building on a nursing home that sucks!" Now let's fast forward a few years.
My brothers who were concerned (I think more about their inheritance, but in fairness they believed their advise) but unable to help are dead. My mom is now,(not politically correct) crippled and can barely walk. She is showing signs of dementia and is in constant pain all the time. She has terrible balance issues and is at high risk of falling (and I'm not sure she tells me of all the falls she has had). Her home has been taken over by well meaning nurses who are angels, but her independent life and it doesn't even feel like her home anymore. Her life as she knew it for 85+ years has become not her own. She has lost 3 children, 2 in the last 2 years and couldn't share her grief with dad who has no concept where he is. She lives for brief moments that he smiles at her or is resting quietly instead of yelling obscenities (the only words that aren't gibberish) and hallucinating. He knows she is there all the time, but it is the same as knowing that she is familiar in the same way the nurses are familiar and that I am familiar. He can no longer do anything for himself, speak, or understand. To watch her stroke his face to calm him down during an episode is beautiful and heartbreaking at the same time. The money the boys were trying to protect has quickly dwindled to the point where mom is afraid there won't be enough for her last days. She is in better financial shape than many and should never had to worry about money, is now realistically scaring her. Forget about inheritance, which in the early days was a big priority for her, now she is afraid to spend too much on food.
My sister, who has always believed as I have, that their money is for them and if there is any left, ok. She sacrificed and gave money through the years to family and causes she believed in. We wish she would have spent more on herself but she always came last. Now, we want her to stop watching the pennies (it is going to go to healthcare anyway) and do the things she wants to do while she is still able. Go visit her sister, donate to the church again. Her wants are simple. If we keep dad home much longer, she will need a caretaker herself.
As for me..I have completely changed how I feel about being home as long as possible. While it has been rewarding, it has cost me dearly. I have missed out on so much with my son and his family. My grandchildren barely know me and are too small to understand when they come to visit that seeing their great-grandparents is such a joy to my mom, but seeing great grandpa is scary. I am not able to take them to "fun" places because I am not able to walk any distance without hurting. They live out of state so coming to FL is wonderful for them and they beg me to go to Disney with them. I can watch them swim at the beach for a few minutes or at the hotel pool for a few hrs, but then I am exhausted for the rest of the day. They, of course, are just getting started. I have told my son that I do not want him to take me into his home when that time comes. I want them to remember loving me, not being afraid of me or watch their parents worn out taking care of me. The truth is I sacrificed my involvement in my grandchildren's early childhood to care for my dad. And I think I will be going thru it again shortly with my mom. However, mom and I are so close I feel blessed. But mom said yesterday that when she gets to the point where she needs this kind of help she wants me to place her while she can still interact with others, maybe make friends and not b so isolated. Only 1 request, "visit me when you can, even if I don't know you, I will feel you"

DGinGA, I couldn't agree with you more. I don't have children, but if I did, my priority would not be giving my money to people who didn't earn it. I would spend my savings on my iwn suppory and enjoyment. Anything lrft over would be delivered to my heirs. I live on Long Island in NY, and here there is an epidemic of well off but stupid parents basically supporting their self entitled, selfish children. I would not be part of that. I hope one of your caregiver siblings has POA. That way, you can move your parents to a good facility without the other siblings permission. And btw, to say nursing homes "suck" doesn't even begin to cover it. Sadly, at a certain point, there are no other options. That's why, as much as possible, we should make every effort to enjoy our lives now.

I was a little sad to read about the bathroom incident. Everyone has accidents, adults and children. Maybe time for depends.

I am with captain on this one. It was tough but my whole family was committed to keeping my parents together. My children were young when we started and everyone pitched in. Someone sitting with grandma telling her how their day was while I was cooking dinner. Any friends of my kids came in the door, touch Nan's hand and said hi nanny I'm nancy, Sarah's friend. Splitting up a couple that has been together for 67 years is heart breaking. Could you hire help daily for the sole purpose of grandmas caregiver. Walk with her to kitchen, see if she needs help in bathroom, come early to help her get washed and dressed. We did all of these things. We explained to my dad that hiring help was still less expensive then a nursing home. Explained to mom that my friend was coming to help me out. This went over better. Explained to dad that we needed fulltime help because we just couldn't do it ourselves. My children have learned the true value of family. Again, it was the most rewarding thing I have ever done!

Christine 73, I know nursing homes suck, for the most part. But unless those precious children who you want to leave that money to are willing to take care of you 24/7 until you DIE, then you are going to have to suck it up and spend the money. My sisters and I are currently taking care of our 90 year old parents. It is rough, to say the least. We've been doing this for five years, taking turns providing 24/7 care. Two of us live 1,000 miles away, and one lives 250 miles away. Nobody wants to have the full time responsibility of having them in her home, and I don't blame anyone. Mom and Dad are scared to death that they will have to go to a nursing home, but they also REFUSE to do the things they need to do to stay at home. Their argument is always, "We would have to sell the house and we want you kids to inherit it." You know what? Three of our sibs have done ABSOLUTELY NOTHING to help with this care, and frankly, they don't deserve to inherit. The three who do provide the care are more than willing to sell the house to put Mom & Dad where they really belong. But we have the other sibs calling and telling Mom & Dad that they've worked too hard all their lives to have their savings go to pay for a nursing home. Personally I believe that their money should go to take care of THEM! If there is anything left over, we can inherit. But the State should not have to pick up the tab so my lazy sibs can have the money for a new car.

This will sound naive, maybe unrealistic for your circumstances. Have you considered moving the entire family to the family farm, thereby decreasing your own housing expenses. Then bringing in help, like the farm help who can cook, sit with her, generally help out? Maybe that is not your choice of a lifestyle.

You said your husband is ready for her to go.

NatalieP, on my gosh Christine73 above is so right when she posted "using up your health". Before I started doing logistic care [not hands-on under the same roof], I was pretty healthy.... six years later I have aged 20 years and my health is so far down the tubes I probably will never get the back :(

Not only using up your health but also your finances since you quit your job. I found this not long ago which was an eye opener to me. Here are some things to think about if one is trying to decide whether to quit work to care for an aging parent.... on average if a working person quits work he/she will lose, over the years, between $285,000 and $325,000 which includes not only loss of salary, it also includes the net worth loss of the health insurance; loss of money being put into social security/ Medicare; loss of other benefits such as matching 401(k); profit sharing; etc. [source: in part from Reuters 5/30/12]

Lot to think about.

I would like to underscore what Janny57 said. If you have any doubt, I'm living proof that the phrase "using up your health" is 100% literal and accurate. Please take heed. Many of us on this board learned this the hard way and no one wants to see that happen to you.

I have a friend who was raised on farms in Iowa. Her mother, who lived and worked on a farm her whole life has dementia and was recently taken from her home and put in an assisted living facility. At first it was ok. She was allowed to have her pet and that made it bearable. But she couldn't remember to clean up after the dog and the smell got bad and so they made her get rid of her little dog. Now she absolutely HATES it. She wants OUT. She wants to come to CA and visit with her daughter (who by the way has her 90 yr old MIL living with her). So, it may be hard and there will be a lot of complaining but like others have said, if it is becoming too hard on YOU and your family you need to do the hard thing. You have children that are going to need YOU for a while to come and using up your health on the grandparents isn't right. If they were in their right minds they wouldn't want you to do it either.

It is a shame that we have these diseases that take our memories before our bodies. I am kinda in the same boat with my dad. He's alone (with the exception of 2 renter on his property) and has dementia. I drive the 90 minutes every weekend to help dad but really it isn't enough. He doesn't want to hire help and so on it goes. I am waiting for "something" to happen that will change things. I wish you well in your tough decisions.

Caregiving requires the complete package. See an eldercare attorney for financial planning. Type your comments and experiences here.

Grandma and Grandpa need to be placed in a good care facility. Yes, they will have to pay for it, but that's life. I am older than you and single. I quit my job to care for Mom who has dementia. I cannot imagine a young married person with children doing this. Christine73 said it right "it will literally consume your life". Everything you do will revolve around Grandma and Grandpa and as they grow frailer the less freedom you and your family will have.
It's time for your husband to have a man to man talk with his Grandfather about moving into a care facility. You and your husband have to put your family first. Your first obligation is to them!
Good luck to you. I know it won't be easy, but you have so much to loose if you don't resolve this now.

In defense of the original poster, I would not want all my assets going to a nursing home either. My mother is in a nursing home, so I know what this feels like. All her assets went. While it is absolutely true that the rainy day IS what you save for, nursing homes are simply not WORTH the $12,000 a month they cost (in NY). Period. This would be a lot more reasonable and easy to swallow if the accommodations and services were a little more commensurate with the price. And that's putting it mildly. I'm sure if the cost made sense, so many people would not try to hide their money, cry poor, and get on medicaid to pay for a nursing home. Most people would rather pay their own way in life. I know I'm getting a little off topic, so, getting back to the question at hand. Your grandma has reached the point where she needs a nursing home or memory care unit. Thank God that option is available. They know just how to handle this and they are equipped. You are not. No one is, in my opinion. I moved my mother into a nursing home. It broke my heart, but the quality of her life had devolved so. She is much happier now with the structure, activities, 3 meals and snacks she doesn't have to make. She has 2 good friends, and a private room. I feel sad that she had to give up the big beautiful NY apartment she was so proud of, but it had become a tomb. A house of horrors she could no longer fully function in. I was there every day after work. I paid a friend to be there when I couldn't. We tried the home health aide route and that was a total disaster. We had just run out of options. Kind of like it seems that you have now. I would start by visiting different "mixed" communities that have assisted living and NH care in one building. That way both of your grandparents can be accommodated there. All facilities, whether they are nursing homes or assisted living facilities, are required to allow married couples to room together, so a mix facility may be a really good solution. Do your research then call and ask for a tour. While you're there, try to get a feeling for the place. Take note of the way you see the staff treat the residents and whether or not the residents look somewhat happy. Since your grandparents have money, every option is open to them. Good luck, and keep us posted. As an aside, I agree with windyridge that you are way too young for this. I am 7 years older than you are. Newlywed, no kids, and I was too young for this. Not that you don't have the maturity to handle it, but that quite simply, it will consume your life. Literally consume it.

I think you definitely need to make your husband and other family members help you put your foot down. If your husband's grandmother is at the stage where she's defecating on the floor and no longer safe in the kitchen, then yes, it's time she moved into a memory unit. Even with private home care, which malloryg8r pointed out is very expensive, you would need 24/7 care to keep her safe (and your family). In my experience (I work as a caregiver for a private company), it is almost always better to move a parent with dementia into a care facility sooner rather than later. I would play on her husband's need to take care of her- get a doctor on your side. Have a real conversation about dementia and the long term picture with your family- you should not have to do all the heavy lifting (physical or emotional) yourself!

Gosh it is like a big Red Flag, anytime a senior (or their child, or grandchild) says something like "I didn't work my whole life on the family business just to have it all go to a d*mn nursing home. " you have to nip that Irrational Thought right in the bud. And it's going to be like making a left-handed person write with their right hand. This pervasive idea that someone should "work my whole damn life" and then NOT pay for their needs in retirement, is just plain Irrational Thinking. Get ahold of yourselves! --a family business is An Asset. All such assets are to be considered available for USE when there are NEEDS. Your baby needs special orthopedic braces--you sell your diamond ring, so baby can walk better. Your wife has dementia and is crapping on the floor--you sell your family business and place her in a facility which can offer her appropriate CARE. You must TRADE assets for care. THAT is how ALL of Life is. If there can be appropriate in-home care, it will probably cost $300/day and you will need about 6 caregivers (3 who work M-F in 8 hr shifts, 2-3 others who split the weekends and another on-call for vacation/sick times). Pretty soon you find out, as gramma gets worser, it is less expensive to place her in a dementia home at $8,000/month.
PLEASE, get rid of the Irrational Thinking that says "I've worked my hole damn life. ....its not gonna be wasted in nursing home." That is like saying "my baby needs shoes but I'm not gonna pay for it cause I wanna have my cake and eat it too."

I would think with income from the farms plus social security they are way better off financially than a lot of people on here. It's time to give grandpa an ultimatum, more help in the home or a move to assisted living. You should not have to sacrifice your income for their care, as ff says, that's what they saved for all those years. I would make a "wish list" of what can be done to meet their present and future needs at home and then decide if it is even a realistic possibility.

Captain's experience notwithstanding, I would never consider doing it myself, and I wouldn't advise anyone else to either. I think you need to have an enormous emotional investment as well as a totally unfettered schedule and lifestyle to be able to take care of a dementia patient, unless you have 24-hour nursing care in the home. It doesn't look like the OP has either the emotional investment in her grandparents-in-law, or the unfettered lifestyle to provide dementia care to her husband's grandmother.

To the OP: If they have assets, the money should be used for their care. If they won't accept care in your home, or if that doesn't work for you, they need to move to a facility. If your husband is ready for them to go, I think you need to let him lead the way in persuading his grandpa that his grandma needs a higher level of care than can be provided in your home.

different people on here are going to tell you different things . 1-1/2 yrs after my mothers death from dementia im looking back and seeing that caring for her in her last years and months has been the single most rewarding thing ive ever done in my life . im single so it wasnt a big detraction from other obligations .
i was a lousy soldier , a decent husband , a dedicated father , a d*mn good stone mason , but dementia caregiver is the thing im most proud of . it requires mind bending logic and problem solving skills and incredibly few people are capable of doing it well .
my advice ; consider doing it for yourself and as an example to your kids , hold your head high and do it well ..

This is going to be tough. They both need to be in care but at different levels. Many facilities have assisted living and memory care. If gramps is still mentally competent and won't agree then things are difficult. Hubby may need to do some very tough love to get grandma placed. You guys are waaaaaay too young to wreck your lives attempting this level of elder care in your home.

Actually elders work their whole life so that they would have money for those "rainy days" and moving into assisted living/nursing home is considered a rainy day.

When you still have young children at home, you want them to remember Grandma as the fun loving lady... not a Grandma who is peeing on the floor. As you already realize, her condition will steadily get worse and worse.

Who is running the family farm? Other grown children or relatives? I realize your in-laws don't want to move into an assisted living/nursing home but sometimes they no longer have a vote because of safety concerns. It's going to be a battle, so be ready.