Reasons for care at home...

For two years, my husband, a retired nurse, provided most of the hands-on care of his mother, shuttling her to appointments, while I did most of the cooking (special diet for her), laundry, cleaning. With advancing dementia, difficulty walking, and inability to perform basic daily tasks, she couldn't be left alone, so one of us was always with her. She was often up in the middle of the night, so one of us got up to get her settled back into bed. I don’t know how one person could ever provide all the care an elder needs!
Our social lives evaporated. We couldn't travel or go see our kids or grandkids, and family members really were in situations that precluded their reliably coming to help.
As feelings of being trapped mounted, we hired an aid a few hours a week so we could get out together. Then we tried memory senior daycare a few hours, which Mom not just tolerated, but seemed to enjoy! She didn’t participate in activities, but liked being around people.
While Mom’s quality of life was elevated because of the enhanced care she was receiving, our quality of life had sharply declined. We almost missed a graduation, and realized we’d be stuck if we or one of our five kids (or grandkids) had an emergency or big life event.
We began to visit memory care facilities, initially seeking information about respite emergency care. We found one nearby with a warm environment that provided good care. A few months later, their sales rep called offering a special deal, so we visited again, and made the decision to move her there. It was time. We were exhausted.
I hear a lot about not moving Mom from "familiar surroundings", but even when she was living in her own home, she often said she wanted to go home-- back to the city where she was married and had begun raising her children.
She has adjusted to the memory care home so much better than we expected! She likes watching folks around her, and even as her speech declines, she tries to tell us what she thinks she knows about them. She likes the staff and nonsensically banters with them. My husband checks in on her almost daily, and I go along a couple times a week. We are still committed to her care, but are so thankful to be able sleep at night, and be able to be more involved with friends and family, even some volunteer work (including there at the memory care facility)!

We sold our home to move in with my mom because she asked out of feeling lonely. No dementia , (not then ,not now ). She would constantly call me in the middle of the night to tell me she couldn't breathe or for some "medical reason" and I was running across town at 2 or 3 AM all false alarms. She did not want AL after touring them ( said it was a glorified jail) and cried to me that she can't go there. So here we are. Would have /should have. Should have sent her to AL.
So the reason we are helping her at home is that we decided with our hearts and not our heads.

I guess my post is more of a lament about the decision that has to be made, home vs. facility care. It is not a practical list. I am simply a “fiduciary” and VA custodian, right? What’s so hard about that?
I am a long distance caregiver whose father (and his father) built Dad’s beloved home. Dad is an easy-going guy with increasing dementia and normal pressure hydrocephalus, which severely impairs his ability to stand and even shuffle a very short distance. Though his short-term memory is almost non-existent, he knows me and his hugely talented caregivers, who treat him with great respect and love. He is increasingly bladder and bowel incontinent. So far, no lifting required and there have been no falls that break bones, no UTIs. He would truly lose it if he had to leave the enjoyment of his home, which he is so proud of. I know the day is coming, but until it does, I have to figure out how to keep him there til his caregivers can’t handle it.
The guilt I feel about being so far from him is irresolvable. When I read others’ posts about their ability to have their loved one in their home, I cry and weep and go dead inside. Dad has asked me to move in with him for years. He complains of lonliness, which I suspect facilities can assuage with activities and attempts to provide social stimulation.
But I can’t move to be near Dad. I also realize that my physical body cannot physically take care of him. I can’t get beyond my aversion to his terrible incontinence. My 87-year-old husband really resents the draw on my time and energy that’s been going on for over 15 years. My husband is at the end of his rope of tolerance. And I am getting there too. When you distance-caregive (and grieve daily for all you can’t do to lighten and brighten their frail one’s days), you cry a lot and see a therapist if you are able to afford it. It’s hard to understand or believe that “distance caregiving” is such a different kind of stress, and you are left with feeling you failed everyone. You come to understand it’s a necessary compromise to learn to live with sorrow and guilt. It feels it will never end.
I guess I know my limits, which are that I could not stand to even imagine the betrayal and look in Dad’s eyes if he were forced to leave his home. He will break, and I suspect be miserable and hold it against me. He trusts me so, and I am his only loved-one contact. I am facing his removal from his home probably sooner rather than later, and it’s tearing me apart. My trips to Dad’s have become less and less, and he knows it. He feebly talks about his loneliness for family. My sister is very ill and is not and cannot be involved whatsoever. I try to maintain good phone contact, but it is so hard and awkward because he doesn’t track things anymore. I cry all the time. I am looking into a geriatric case manager to do the dirty-sane work, but I know where that will go and can’t face it. I keep him at home because I selfishly don’t want more shock and disruption in my life.
And the empty house … don’t want to deal with that either. Can’t afford status quo. Maintaining Dad’s home (in an affluent area) from my own $$. When visit there, rip into home and yard maintenance (to save $$), as poor Dad sits wondering whose car is parked in the driveway. Don’t want to even meet with Dad’s elder law attorney for Medicaid qualification check-up. Just burnt out and somewhat irrational. I know it, it doesn’t help me make the decision.
So your question and the fine answers given are so relevant to my emo rail-nail sitting.

I always said I would care for my Husband at home for as long as it was safe for him and for me.
I was very lucky, he was very easy to care for. I never had the problems some do/did with him getting nasty and arguing, on the other hand he was also pretty much non verbal so he could not argue. I also did not have a real problem with him wandering but that was because in the fairly early stages he had slipped on some ice and fell and broke his hip so his mobility was limited. Although because of this he needed more help sooner and due to the rehab he became incontinent earlier than he would have. But he was sweet, good natured and even though he did not talk to me, use may name whenever I left the house I would tell him I was leaving and on my return I told him I was back, he would turn his head and give me a kiss. I had several paid caregivers (Thanks to the VA there are programs available that will pay for caregivers) I had 2 AWESOME ones the last 6 to 8 months of my Husbands life (recent graduates of the local community college CNA program) and I had a few nightmare caregivers.
 I also had the most wonderful help from Journey Care Hospice.  I would not have been able to do what I did without their help and support.
Would I do it again?...for him given the same circumstances YES!
What are my plans?...I as a result of this experience have purchase Long Term Care insurance. There is no way I would want to put anyone I know in the position of having to care for me. I think though if I am ever diagnosed with any form of Dementia I will move to a state where Medically Assisted Suicide is legal and follow the steps that I need to in order to end my life at a time when I choose.

My dad was in a memory care facility for six months before he passed away. He adapted well. He knew where he was and he knew it was the best thing for him. He was outgoing and the staff loved him. My mother is a completely different personality. She can't operate a TV remote. She can't read. (Dad could still do both.) She would hate the loss of privacy. She would not make friends and I'm pretty sure the staff would not come to love her the way they did my dad. Even though there is great care in the facility he was in, it's not one-on-one and most of the time she would be alone. I simply cannot put my mother in that situation at this point in her life. I'm fortunate in that I'm retired and single, so living with her poses less of a challenge than it does for a lot of people. She is still functional and "there" mentally, for the most part, so that makes it easier. Still, I often resent giving up my life for this. But I know in my heart that it's the right thing. I will always know that I did everything I could and the best I could to make her life as good as it can be at this last stage of her life. I will never experience one moment of guilt that I didn't do everything I could.

I read the answers everyone has posted and see all sides of this. What about "Time"? It goes on....then you realize your getting older. Your not the same as 5 years ago. How and when do you start to enjoy your own family again? They have been put on the sidelines, on this journey along with you. Not everyone has the extra room in their house. Today I start another file to hold all monthly paperwork, and realize I have two 4 ft file cabinets, full holding all of my parents receipts just "in case". I am lucky that my parents saved and we're simple people. But I have lost my sister in all the caregiving guilt, and have lost relationships with friends. Everyone has an opinion on how they would do it, but they never had too. I go between the "it's an honor to care for this woman" and then "come on now", can I just have a holiday to myself. I hope I don't put my own children in this situation.

What a wonderful post and question! With all the complaining I have done with taking care of my mom I still feel I can give her the best care with her in my home. She is so very frail and eats so little on her Celiac diet. It’s too late now to make a transition now. She seems to for the most part feel safe in my home.
As the only child willing to do this ... I think I’ll be glad when I say I did my best. Although I have dealt with a lot of emotional baggage during this time of taking care of mom ... I do believe it will be worth it all to say I’ve tried to honor her and be faithful in my care for my mother.

Thank you, jo2a0507, for the breakdown of expenses. There is no right or wrong answer; just which option is least expensive, because all options are expensive. I read somewhere recently that, according to the Alz Assn, 60-70% of people with dementia are cared for at home because of costs. That is a HUGE number!

But that is just the financial side of the decision. The emotional side can be expensive too - i.e., can you put up with the guilt? It is a lot more difficult when your loved one with dementia is a spouse than a parent. If your parent(s) are sick and you have a young family, or a single parent yourself, it would make sense to have your loved one in a facility. But as a spouse with no young kids, it is harder to decide.

I do it because I love my Mom and choose to do whatever I can to make sure she has everything she needs and that I am always there. I believe it is my duty, and a work of love. I believe it is what honouring means and I believe this is what the bible teaches ME to do. Love others more than myself.
But when we choose to do this, we must also choose to accept all the growth and learning we will have and need to do. God gives strength to those who are HIS. Everyday we must choose the other person over ourselves. We must also choose to make the sacrifices that is necessary to make sure we are doing this right. We must choose each day to set the tone to a healthy one and we as caregivers are in charge of our emotions. We must also know that this is one of the hardest things we will do in our lives. And it brings challenges that test our strength and endurance, and our love. But it is truly a choice, and I would choose it over again a thousand times. Because in all of it, if we listen closely or pay close attention, we will see there are blessings. God gives strength to the weary.

Here's my quick comparison between hiring a caregiver at home vs. Assisted Living for those with dementia.

Based in SF Bay Area pricing:

A) Hiring Home Care Agency averages $27/hour (24 Hour Care): $10,000 Min./month
- You still pay for utilities, food, mortgage (if there is), home insurance etc.

B) Assisted Living/Memory Care: Avg. $ 7,500 including care/month (maybe less in other areas)
- Shared room, includes all utilities/food/transportation etc.
- Private room price should be almost double

C) Non-Licensed CNA or "under the table" - well its' definitely less expensive than the above mentioned but I would definitely NOT suggest under the table caregivers! Again if this is a dementia patient you will still need more than 8 hours/day and definitely 7 days a week.

Ilovemycats, ya know, I've been thinking about that question lately. I think I'd like to spend my last days in a nice facility that could provide the level of care I need. (This assumes I reach a point where I can't care for myself, even with some help.)

Would I like to live with one of my children? I love all five of them and enjoy spending time with them, but no, I would not like any of them to care for me. Visit me often? Do nice things for me? You bet!

I have a dear friend and it would be cool if we could live together in our old age, but we are the same age, and that doesn't seem feasible.

If I had a spouse, and he would provide the care I need, that would be great. (As I did for my husband.) But other relatives? No.

To allow them to be in a familiar environment. To be taken from their home and put into unfamiliar surroundings and people can cause confusion and stress regardless of their pre-existing conditions. Just ask yourself...where would you want to spend your last days, years etc..

So sorry to hear Grammyteacher. At stage 7, does she know who you are or whats going on?

I keep thinking about the months my husband was living in memory care. I did not eat well or sleep well. I did not even want to be home after work because I was lonely. I ended up spending a lot of time with him at the facility. Now, it is exhausting taking care of him, but weirdly, I worry less and eat/sleep better. Tired, yes. Worried, hell yes. But I feel better knowing that he is cared for the way I think he should be cared for. Isn’t that odd? Maybe I am a control freak.

I have always said that as long as I feel I can give mom better care than she can get elsewhere, I will continue to care for her.

Karsten, that is only true if you use paid help.

Our family pulls together to make sure mom stays home. She is in the final stage (stage 7) of Alzheimer's. She hardly eats or drinks at this point. I think the end will come soon but you never know. I love her and I am happy she has been here with us. I am happy my children and grandchildren have had this time with her too.

Anniepeepie brought up the issue of legal docs. Did any of you regret being the PoA?

Good question. In my case, my mother moved in with me after my Dad died when she was still quite independent. I am an artist who works from home-Since she is now bed bound most of the day, and also blind, I can look after her and still work on paintings and portraits. In years past, I had taken care of a friend of our family with alzheimers. My parents when setting up paper work and legalities years ago made it very clear that they would like me to be in charge and take care of them if and when the time came. They asked that I do it as long as I could. I guess not everyone is the same. Thankfully I am able to stay home plus I have a caregiver in my neighborhood and a supportive husband and son who help. Some of us are nurturers and others not so much. I plan to see my mother to the end of her journey. Difficult? yes.! To me its just the right thing to do. I think care centers are nice and fine and dandy for some people.,not for everyone. If I put her in a facility with the level of care she needs, it would be almost 12 thousand a month. Thats a lot of money to be somewhere she doesn't want to go to . She wants to be around family, While I can do it., I am,

For my husband with dementia:
1) I loved him, and wanted to be there on this journey
2) His symptoms and behavior could be managed at home. I never promised I would keep him home forever. I said I would always see that he got the care he needed and I would never abandon him, even if he needed a care center.
3) I got help, so that I really could (with help) care for him at home.
4) We grew closer and caring for him was a meaningful and rewarding experience. I would do it again (but I'd get help sooner).

For my mother with dementia:
When she could no longer live alone my newly retired sister took her in.
1) Sister loved her and wanted to spend time with her.
2) She thought it would be a rewarding experience. It mostly was.
3) She had help from 3 sisters
4) We all thought this would be best for Mother

Sister was able to give her a wonderful transition year from independent living to a nursing home. She provided "assisted living" level care. When Mother needed a higher level of care, we placed her in a nursing home, where she thrived.

from what I understood, caring for someone at home costs MORE money to the degree you cannot do it all yourself and will need to bring in outside help.