How do you decide if best for parent to "Age in Place" or be in assisted living?

Aging in place is a wonderful fantasy. But often an ugly reality. Is it really "independence" when worn-out family members or paid caregivers do all the planning, shopping, shuttling, meal prep and cleaning? And let's be realistic about the condition of the home, after it's all over. Years of neglect, often combined with hoarding. After you empty the house, it won't be an attractive sell. If your parents were astute and financially secure enough to install hand rails, lifts and ramps, that's great. But still a tough sell.

Would a smaller board and care work for her? A neighbor who was a retired nurse set up several bedrooms for seniors and they had their own space, run of much of the house, and someone who knew how to take care of them.

Social isolation will occur if she ages in place in her own home. Maybe the ALF is not the right one for your mom, so you may want to consider looking for another facility. I would also reach out to the activities director of the current ALF to see if there is anything that can be done to better engage your mom in the community life.

I am a strong advocate for remaining in the home, but NEVER at the expense of the care giver giving up their life totally to provide care.
Care giving can last as long as 20 years with today's medical advancements. Caregivers are giving up jobs, homes, relationships and their own physical and mental health to provide care for their loved one.
There must be balance in life. There will be life after care giving. The quality of that post care giving life will depend on what you do as an individual in the present.
The statistics are dismal for care givers- did you know that 50% of the primary care givers of individuals with dementia actually die or seriously ill ,before the person with dementia passes.
Care givers need to realize that assistance is needed. They cannot and should not attempt to provide care alone. Care giver stress kills.
I have worked as an agency nurse over the past 20 years while I did a full time job. I have worked in the worst and best assisted livings and nursing homes.

I have also done home care.

It is important to know that home care is a wonderful solution. It is not utopia. A family must learn to protect themselves from strangers that come into their lives. The hardest part about home care is that even the most seasoned family member with professional management experience is not prepared for what lies ahead.
Home care and the level of intimate and personal care that is provided promotes comfort and letting our guard. It is sad to admit, but there are people that take advantage of that.
There is no perfect solution to what we are going through. There is only the course that is right for you and your family member.
If you choose placement in a facility, that is not a sign of weakness. Your role will change to one of advocate. That is just as hard and even more so sometimes. Your role of care giver is a long and hard road. It does not have to totally consume you.

Well, More me I guess it is much better to have a professional that will took care to your mother...

Yep. My mom has refused ALF also. She is up and down every night 3-4 times. She refuses my help w/bills, etc. We have an appt with neuro Monday and i cant wait. She really needs some medication badly. Hoping to get her on the seroquil. I was one of those stupid people who didnt have any idea about what i was getting into when i took this on. I need to set those boundaries as mentioned previously. Ive been trying to please this person all my life and now i am all out of gas. Hope i never do this to my girls. She a selfish,spoiled woman. Time to set boundaries. My best to all of you in this sticky situation.
Love, tonio999

Yes, each situation has its own special problems, but the assisted living facilties make moving sound much easier than it actually might be. You might find some more information on the Dignity First Doctors channel on Youtube. They have two videos - one on What does Aging in Place Mean? and the other about Why Isn't Mom More Socially Active? Just put in dignityfirstdoctors in the search line.

Thank you dianecarbo for your real-life comments. My father is in a dementia care group home where individual attention, redirecting, a firm 7day week schedule w/ meals and more are part of daily care. Just a note to all - there are some dementia care 'gems' out there; not easy to find, but they do exist. I agree that, in larger facilities, it's unrealistic to expect that one-on-one w/ your loved one. There simply isn't enough staff. Thanks for your insights!

I responded above earlier...Many responders have indicated that they want their parent in a safe place and that their homes wouldnt be a safe environment for them. I feel that Convalescent homes, long term care facilities and assisted living homes are not necessarily the safest place. Patients receive alot of neglect in these places regardless if they are surrounded by more people than in a home. In order to avoid neglect from caretakers in these facilities, family members need to show their faces daily and at various times of the day to prevent outside caretakers of mistreating your parent or neglecting them. Those patients that dont have anyone or family visiting on a regular basis were the ones most neglected. When my Mom was in a facility for short term rehab, I witnessed everything from lunches and dinners being taken away if patient didnt touch the food within 45 minutes time, to heavily medicated patients, patients smelling of urine and sitting there for hours before they were helped, not bathed....not to mention missing laundry issues. Even though my MOM has dementia, she still knew her belongings and would get agitated knowing they were missing. Not to mention that when a ptient acts up or misbehaves, they will give them more medications, like higher doses of seroquel which will eventually shorten their life. Most elderly people dont live as long in a place like these than if they were home. I love my Mother and hope she lives as long as possible.. If you can keep your parent in their home with state aid or personal funding and arrange for family and friends to visit her often and bring meals, snacks, try to do so...Its much nicer to make those visits in their home than an outside facility. A home is a familiar surrounding which helps dementia. Afterall.....There's no place like home!

Catwoman , as a nurse that has worked with dementia patients, I will tell you that what your mom is going through is not unusual- especially at the level of dementia that your mom is at.
I think that one of the hardest things to understand is that consistency and a routine are so important to a person with dementia. Even more so when they get to the level your mom is.
The small home is most likely your best choice-even though you may not feel that it offers enough right now. You will find that most AL's do not offer consistent activities on week ends.
There is always different staff - maybe even less staff. The routines are weekends change.
This is not good for the dementia patient- but, even when a facility says they offer "dementia Care"- it is NOT really dementia care at all.
The staff most likely is not trained on behaviors or even cognitive approaches to care.
If a facility really did have ":dementia care" they would have staff trained in behavioral approaches, offer consistency and keep a schedule, even on weekends.
I know I sound harsh, but the fact of the matter is, the facilities offer custodial care- with a locked unit - to keep people safe. May offer an environment where a person can wander and not get lost. But, it is just high level custodial care.
Getting a person to work with your mom is great. If you have old pictures and are able to bring them- I have a suggestion for you.
These pics may spark some sort of long term memory. You have to work with what your mom has- and not focus on what she has lost.
Get the old photos out, and create an album. IF the person working with your mom can discuss photos and old times with her. That is a strength of your mother's right now. Focus on her long term memory.
Bring in a cd player and play her favorite music. If she did not have a favorite kind of music- get music from her time and play it. You will be surprised at the results and responses.
If she is an animal lover, make sure you have a visit from a pet therapy group.
It is sad to say, but, families have to guide and teach the facilities how to care for a family member. You are the expert.
A person with dementia is truly living in the here and now. They do what we are all trying to accomplish- not focus on the past, and not worry about the future.

It is a hard concept for us to grasp. The important thing is that she is feeling safe and basically happy.

Terrimerritts, Not everyone is cut out to be a caregiver whether it is for a family member or not. J.ust because you were able to do it for yours don't mean everyone else can do the same. For one, everyone situation is different so can u try not to be so harsh n maybe a bit more open-minded toward others.

Catwoman, you can only do so much n hopefully she will be able to settle in n be comfortable. All ALF r not the same so u may want to be checking other places that can give your mom the best care they can if the place she is already staying is not able to give her that care. Eventhough, she has memory loss, she is a human being. I would think she will remember some stuff n a place that does activities would help your mom even if she don't remember it later she enjoyed it at the time. That what I think about my mnl when we take her once a wk to an activirty respite care for four hrs. I know she is smiling when I drop n pick her off n even though she don't remember what they all done that day, I can see it on her face that she enjoyed her self. Now, next Wed will have to start all over again to explain she will be visiting her friends at the church n that she will have a good time. of course next Wed there not open due to holiday. U get what I mean. All u can do is the best u can n live your life too.

Wow, I sure didn't expect so many thoughtful responses. I see a lot of truth in these posts and points that are well taken.
Mom was already socially isolated at home before the accident, which is what we hoped the ALF would alleviate. And it has, just a little, even though she doesn't realize it.
I discussed my mom's poor adjustment w/management. (threatened "make her less miserable or lose our $ forever!) It is a smaller ALF, so they don't have a social worker on staff. They have made some extra small effort to settle her in, but with her short term memory loss, the small and constantly changing staff aren't able to keep up the repetition as often as required. She's been there two months and rarely even remembers that they have a dining room.
That is why I hired the companion who just started this week. Hopefully in the next 2-3 weeks we will see if more repetition has any effect.
We chose the ALF as it was smaller and hoped mom wouldn't be totally lost in it, and might with time actually make a friend. She has a shared living room and currently one of her neighbors does spend a little time with her. She hasn't taken mom under her wing...but we encourage any help we get. Have to say the activities are pretty poor, there is almost nothing to do on weekends. We can consider a larger ALF nearby with more amenities, but I think with the short-term memory loss, it would take a miracle for her to get to know anyone. I will spend some time really thinking about your responses and let you know how we progress. Thank you all so much! Really appreciate the feedback!

Ditto what Only1of3 said. She's absolutely right. And you know what? Getting old stinks. It's not for the faint-hearted. Aging can be lonely and depressing, and, exacerbated by the fall, you did the most loving and practical thing - making sure she's safe and clean. These are agonizing times for us kids w/ older parents. But we must remember as per 'friendofnature' that you are entitled to your life. If the resources are there to provide AL care, put them to good use as you have. You'll still beat yourself up...we all do...just hopefully not every day. Warmest regards...

My in-laws are still able to live at home. My FIL is 101 and dementia is starting to rear its ugly head. Fortunately, my FIL is a gentle soul and isn't difficult to take care of. They have around-the-clock help so that is a tremendous asset. They did plan for their end of life care which is an additional blessing.

As my FIL's dementia increases so will the demands on the family and care givers that is a given. He may have to be put into an ALF one day as his mobility is extremely compromised and he is not a small man. We take it one day at a time and count our blessings.

Prior to my in-laws health decline, they were the care giver "organizers" for 4 different people helping them with their end of life journey. I think this is why my in-laws are so prepared. There are 5- 6 different care givers taking care of my in-laws so that helps with socialization; they have friends who also drop in and, on occasion, they are able to go over to someone's house for a meal.

Wishing everyone dealing with aging parents God's loving guidance in making choices on behalf of your loved ones.

As previously mentioned, each situation is different. It sounds like whichever choice you make, there will be complaints.but you do have the big picture of what is best for your mother - let that guide you. In looking back, I wish I had put Mom in her dementia care facility a year before I did. I let Mom age in place until she no longer recognized that "place" as her home of 47 years. Then I rented a duplex for her that was close to my house so she could still keep her little dog. That worked out well until she lost the ability to entertain herself by reading, and the TV didn't penetrate her brain any more, about a year ago. That's when I should have moved her. She eventually fell which precipitated our decision to put her in the facility. It's the best thing that has happened to her . . . and to me!! I had not realized how much of my life was taken up by caregiving. I'm confident she is well cared for now and she is enjoying being around people and out of isolation. Yes, I'm still the person who matters most to her and I try to visit daily, but she has access to activities that are on her level. No, she doesn't interact a great deal any more, but humans weren't intended to be isolated and she appreciates the diversions. I might have agonized about this decision a year ago, but with the fall, there was no other choice. What I'm getting at is that 1) deep inside you know what is right for your mother and 2) you are entitled to a life as well. She has lived hers and this is still her journey, you can't take it on for her.

I preface this by saying every decision is so personal to the family and the patient. This is our experience: Our mom is now in assisted living. She has moderate dementia, has had two heart attacks, a broken hip, a stomach bleed requiring transfusions, and two small strokes. We consulted with our neurologist on the possibility of allowing her to stay in her home with help. The answer was a resounding, "No." There comes a time when you have to look at safety and the level of care needed and forego your own wish to keep a person in their home or even bring them to your home. The doctor told us several things: 1. Most patients with dementia do better when they have interaction with a variety of people on a daily basis. 2. Given our mom's level of dementia and physical problems she was exactly where she needed to be and we should feel good (not guilty) about having her care given in a professional care setting. 3. Dementia is a progressive disease and it's easier on the patient to transition through the end stages in a care setting where professionals who understand this disease can soothe them and alleviate anxiety. 4. Some in-home care can be considered elder abuse depending on the level of the patient's level of dementia and physical compromise from other illnesses. Although it has taken our mom a whole year to adjust she is now happy and "at home." We call her regularly and visit her 3-4 times a week and take her for short outings. She has found purpose in her life as she considers herself the caretaker of those who are more compromised than she is. She was lonely at home and had started to have paranoia about a man who was watching her at night. She sleeps like a baby now, has gained weight, and says she likes being waited on hand and foot. Not every day is good but most of them are a huge improvement from where she was a year ago.

Seems like the responses above cover just about everything and all good responses. Just want to add - if mom or dad was a veteran then they AND their spouse qualify for veterans benefits for home care or assisted living. It is given by the veterans administration and not on financial necessity. It is basically a "bonus" for the elderly that are veterans. To see more info visit www.veteranaid.org and on the left hand side click on "The A&A Program". For assistance in filling out the forms, call or go to your local veterans admin. office, or call your county government offices, they often have people that can assist. You should NOT pay any agency, organization or attorney to help you fill out the paperwork - and the VA will tell you that also. Many times you will see seminars about this sponsored by the assisted livings; however the people that come and speak and offer free assistance to help with paperwork are investment companies - yes they will assist with the paperwork but they are also in the business to try and get the person to invest their money (thus they get commission) - many times not the correct way to invest to benefit the person and their heirs. So just take that into consideration. Good luck!

Some 'problems' cannot be solved. Do the best you can--without trying to do the impossible. Obtain any help at the AL facility--and--see if you can find an empathetic resident who will take your mom under his/her wing and 'friend' her. Just a good listener can do wonders. Being at home is not the solution.

My Mom has become much healthier now that she's in ALF. She eats right and I can supervise her Doctor's visits because she's near me. It's taken her about a year to adjust, but I think it's been an improvement. Though it's much more work than I thought it would be. One of her friends wisely told her that everyone else there has had to give up their homes and possessions too. They have many of the same aches and pains she does. No point in dwelling on it and just make the best of it.

I struggled with this same situation....After visiting many assisted living and nursing homes I realized my Mom wasnt quite ready for permanent stay there. I think many times, we put our parents there because its is the easy way out for us, but not necessarily the best situation for our parents who have done so much for us. Yes it is stressful...but there is homecare options there. Please visit your Social service dept located in your city or town hall. They have an abundance of information. We recently received funding for my Mom to receive 30 hours per week of homecare and 3 visits a week to Adult Daycare. She is loving her life. My Mom has dementia and needs 24 hour care. The adult daycare program weekely and funded 30 hours helps her and the family needing to be with her 24 hours a day. In addition we have hired an aide for an additional 10 hours per week or arranged for babysitters to watch her when we have special occassions at night or weekends. You can qualify to receive this type of funsing even if you choose to have your Mom move in with you., allowing you and your husband to continue working. Afterall...you said you spend your evenings at the assisted living...that time can now be spent at your home and you will notice that your Mom is not as depressed and miserable or as needy.....At that age, all they want is to be with family, not strangers...All the best...you are not alone!

The answer to this question depends on you and your situation. Many people want to remain in their home, but do nothing in advance to prepare for it. There are many frail seniors presently in the home and are alone and socially isolated. This is really an unhealthy situation.

I am a strong advocate that a person should remain in their home as long as possible, if the person is safe and has a support system in place.

I do not think that a person should remain in their home at the expense of other family members - meaning many family care givers give up jobs, outside relationships and are financially affected.

Care givers do not realize what they are agreeing to do when they say they want to support someone in the home. It may be 10 years or longer of care giving.

My suggestion to you, is to sit and discuss what your family member wants and expects as far as living arrangements.

Now, here is a step that many care givers do not take- SET LIMITS AND BOUNDARIES as to what you are willing and able to do.

Sit and discuss- I cannot take care of you when you are no longer able to walk, become incontinent, become a behavior problem, socially isolated etc.

Put all this in writing. Then, everyone knows what to expect.

Discuss options- nursing home and assisted living. Include those in the conversation. This is a way to make informed decisions comfortably.

Diane C.RN

Catwoman, good advice from labbydog. I suggest you also click on "Why do I have such a hard time not feeling guilty because my mom is never happy?" Saw labby dog on there, too, and also always get good advice from jeannegibbs. Agingcare.com may not have saved my life (My grandson keeps me happy!), but all these lovely people certainly has saved my sanity!

Catwoman, does the ALF has a social worker on staff or someone there who can assist with acclimating your mother to the facility? Most of them do. Is there a "job" (like putting books away in the library) that your mother could do at the ALF? Is she mentally able to participate in any of the things offered there? The ALF should work with you to socialize your mother at the place. Tell them she is having "social adjustment" problems. My mother was living in her own home after my father died, and she was getting more and more depressed. It happens when you are staring at 4 walls. Your mother is much better off in the ALF where she is being watched, getting her meals made, and, at the very least, she can "people watch." The first few months at an ALF can be a difficult adjustment for a lot of seniors, but, in the long run, it is the best place for her. JMHO.

Catwoman, it is my experience that unhappy people are going to be unhappy wherever they are. If the ALF is adequate, I would say leave her there for her own safety. Take back your evenings for you and your husband. Get reports from her companion, drop in to see her a couple of times per week, and give her time to adjust or not. She wants you to fix what can't be fixed and I suspect the guilt is dealt out to you as thick as sludge. Catwoman, she did "age in place." Now she is past that. She needs the care that an ALF can provide. You cannot do it all. Take care of yourself!