I helped my mom move to an assisted living facility near me last year, several states away from her home. She had been declining physically and mentally and was struggling to live alone, far from family. A fall that greatly reduced her mobility triggered the move. She can no longer bathe independently and does not have the strength or balance to do things like fix a meal or do laundry. She is very high risk for falls. I work full time, have young children, and my house is not accessible. Our options were to try to move to a larger, more accessible house and move her in with us and set up in-home care or find an assisted living facility for her. We talked through the options and Mom agreed assisted living was the best option. She had received in-home care after her other falls and it didn’t feel sufficient after her last fall to manage her new limitations. She’s also very social and would be lonely while we were at work all day.After a year, while it’s not perfect, I can say she is receiving fantastic care in assisted living. The staff is wonderful and caring. Overall it’s been very positive and while I know she wishes she was back in her old community, she does feel safe and the stress she was living with before is wayyyy down. It’s making the best of the hands we were dealt.As you can imagine, getting to this place of stability and safety has been an absolute marathon for me, from emergency caregiving, paperwork, selling properties, setting up insurance, transferring medical records, etc. But I find there is such a stigma associated with moving your parent to a care facility and no support or recognition that it can be the most caring option. When I do talk about our situation I find people assume I gave up caring for her when in fact between visits and taking her to appointments I spend quite a lot of time and energy on Mom. People often say oh she should try independent living instead (she’s way past that) as if it’s still up in the air. I hear, “I could never do that” or “my mom would hate that.” Extended family came to visit recently and I thought finally I would receive some support from people who really know what mom has been through and how difficult the past few years have been. Instead I heard “does she really have to live there?? Isn’t there somewhere else she could go?” because it’s just “too depressing” for her to be there mixed in with mild dementia patients that can be disruptive and struggle to carry on a conversation. I do reassure myself that mom is safe and well-cared for and I know I’m doing right by her. The tragedy is not that she lives there, it’s that her health nosedived and she needs to be there. Most people have never been through this and have no idea how difficult it is so it’s mostly ignorance but it feels like judgement.I’m just wondering how you all who have been through this find support.
rating from Medicare. Would I use them?
You bet I would if I had to. I would take the convenience of them being close enough for me to check on her care over driving an hour to a facility where I could not easily keep up with overseeing her care. I would make sure the staff and management know that I am serious about proper hygiene, nutrition and signs of neglect. If I had to make this decision would I feel guilt or shame from the opinions of others? Not for one hot minute! Especially if it was coming from outsiders who have no clue. The point is only you can decide what care you can provide and where. If someone else thinks they can do better - have at it. Otherwise keep your unwanted opinions to yourself.
Facing the Guilt and Shame Afterwards
After five years of caring for my mother at home, I put her in a nursing facility. It was a hard decision, but I just didn’t have the strength to continue caring for her at home. There was a lot of conflict with my dad, who could not tolerate my mom’s behavioral changes. And I have two young children that need my attention. Still, I can’t help but feel guilty, and our relatives are only too happy to pile on.
Shortly after placing your loved one in a nursing home, you will likely struggle with the decision you have made. Did I do the right thing? Did I abandon my mother? Was this the best decision? Should I have given it more time to sort itself out? Was there something else I could have done instead?
There will be a lot of guilt and doubt, and you should be mentally prepared for it. Do not second-guess your decision. Remind yourself that you made the decision with the best interests of your loved one at heart, and that sometimes placement in a nursing home is the best option for the patient as well as their caregiver. Feeling guilty and ashamed is natural, but you should not let it take over your thoughts.
Another reason why you should rein in feelings of guilt and shame is that you’ll probably get enough of it from some relatives. Sometimes, people who lack intimate knowledge of your situation will criticize your decisions. Remember that this was and remains a family decision, and relatives and acquaintances have no right to interfere.
Caring for the Long Haul
Nursing home placement is the start of a new chapter in the care process. Your caregiving role and responsibilities do not end; they just take on a new form. With the nursing home now providing ongoing and professional care for your loved one, you get a chance to spend more quality time with them.
You are now your loved one’s advocate at the care facility and must continue to oversee their care and tend to their affairs. You may visit your loved one regularly, walk with them on the nursing home grounds, and help them eat. You’ll need to stay informed about their condition, behavioral changes, medications, exercise, leisure and recreation, and every other element of their care.
Many caregivers go to the nursing home every day. They feed their loved one themselves, walk with them or push their wheelchair, and participate in group activities with them. They keep a vigilant eye on how their loved one is being cared for at the residence, and make sure their rights and wishes are fully respected.
Dealing With Critics
A few days after placing my mom in a residence, a distant relative called. This was the second time in as many years she had called to ask about my mom. “Where’s your mom?” she asked. I told her we had placed her in a care facility because caring for her at home had become impossible. She started crying, and said, “Why did you abandon her?” I tried to explain, but she abruptly said goodbye and hung up.
In the course of caring for a loved one with dementia, you will come across people who are unable to look past how they feel to grasp the reality that you and your loved one face day in and day out. A person whose reaction is entirely self-focused is unable to see what you need, and wholly incapable of providing any meaningful help or support.
When you care for a loved one with dementia, it is painfully obvious how their awareness of the world around them is shrinking, as if a light illuminating their surrounding is dimming a little more each day. Dementia brings home the fact that our awareness has limits. We live inside our own bubbles, limited by our light and how far it shines. And sometimes, it doesn’t shine very far.
Everybody is judged by whatever choice they make for helping family members: caring for them at home, getting home health care, placing them into long term residential care... Get used to it. People should be more caring, but most don't understand because they don't know what you are going through. Good for you for being involved in your mom's life and making sure she safe and healthy.
Assisted living isn't just for people with dementia. I was a staff supervisor at a very nice AL residence. Many of our residents still drove and had active lives. They were just too old to live alone and to keep up with the demands of owning a home.
The people who criticize others for placing their loved one in care are usually people who were never had to be caregivers for an elderly or disabled person. So they don't know what they're talking about and should really shut up until they've had some experience with it.
It's not a One-size-Fits-All kind of thing. Every case is different. Keeping a senior home or moving them into your house isn't necessarily what's right for everyone.
You did good. Don't let anyone guilt-trip you into believing otherwise.
I care for my 90 year old mother and 92 year old father. I’ve moved them from their forever home to independent living in 2 different states then to assisted living for dad and memory care for mom - downsizing each time and dealing with all the paperwork/financials involved. But the hardest thing i ever did was having to make the decision to separate them. It killed me and I cried for a month.
There are more changes and hard times for each of us as our love ones continue to age. But we know we are doing our best, they are safe and we will continue to educate ourselves on what is best for them and our families.
Stay strong - we’ve got you. And I hope you get some you time in your “happy garden”.
Everyone has a different set of circumstances. Caregiving is not a one-size fits all. Each State has different resources. You have to try to maximize what you can through health insurance first which we both have in common as we brought in-home services which was adequate "at that time" but now your loved ones functioning has declined and another plan needs to be in place.
It's hard to juggle everyday life as well as caregiving. At one time I had to find a 4-hour respite day program for my mother (dementia) who is mobile just so I could get the oil changed on the car and my teeth cleaned. It was an Act of Congress to line up my everyday routine--telephone calls with Blue Cross, doctors appointments, set up passwords for the portal, reimbursement forms, order prescriptions, dispensing meds, laundry, quality food, haircuts, etc. Plus I have to keep a roof over my head and I don't want to be living on popcorn in my old age.
As I have mentioned in newly recent posts, I moved crossed-country to find an Assisted Living that has an Independent Living. Basically, an apartment. These places are needed because the family dynamics are different than when I grew up. Stay-at-home Mom, live in grandmother with in-law apartment, men worked all day, division of labor, pretty much everyone I knew (in my era, I am 60) lived this way. A lot more kids around with more hands to help. Extended family all lived in the the same State. Neighbors popped in without an invite everyday, that was the norm. Families were larger, you get it.
Today is not the case. My sister who never helped out has not forgiven me since "I took her mother away". She informed me that you are taking care of Mom. When I hit 60 and my grays needed to be covered with blonde highlights, I said it's time I make a move and not worry what people think.
I actually live in the IL with mother as an add-on since the Assisted Living is out of budget but I bring help in and meals are provided so this works out perfectly. I work remotely and I belong to a thriving Church. I have interests, friends, etc. I am not going to be the girl in the supermarket who after mother passes takes out a photo and shows people a picture of her cat. You get what I am saying.
My mother could never live in Independent Living on her own. As you said, your mother is beyond that and the same for my mother. Her executive functioning skills are declining. With Dementia, it's like a set of stairs going downwards. They go down, then they plateau for a while, then down another step and so on.
Unless people are pitching in and helping you out and providing a better plan of action, don't let it ruffle your feathers. Stay centered. It's not like you're dropping Mom off and never checking on her. If there is something you see you don't like at the AL you speak up or you move your mother. If it's something that concerns her safety, of course, you more than likely would immediately remove your mother and bring her home.
For the record I have been in the trenches for 10+ years now and I have won my dutiful daughter badge but I don't know how this is going to end but I am not going to refuse any help. I need to still be standing when all is said and done.
Amen Sister...
You sound like you are on top of things. No one walks in our shoes.
When it is family, try saying something like... I guess not, if you are offering to let her live with you! Whatever reasons they give, remind them you have the exact same issues. Of course be ready with a response if someone suggests they can actually let her move in and you already know their situation will not allow it safely. Remind them your mother played an important part in the decision making and you respected her opinion and valued her part of the process.
When others feel whatever you did is wrong in their eyes, they also "assume" you actually did so because you really wanted to! They have no idea the layers of decisions that have been made before you came to the your final conclusion of the best choice.
I remember feeling that way, even a bit angry, when my aunt had to choose a facility for my grandmother. It is easy on the outside looking in, unaware or ignoring all the real issues. I have found sometimes when I feel a "stigma" attached to a decision I have to make, it is because I too had felt that way in the past about other's choices. It is amazing how we can change when we have stepped into the shoes of experience.... so if necessary, let others know you sincerely hope they never have to wear the shoes of experience and hopefully their questions will change to empathy.
I am seeking assisted living quarters now - and will have to go through everything you did - selling her home, disposing of belongings, modifying her trust... you name it.
My husband and I are in our 70's and although we are in good health now, we are spending more time caring for mom than I did for my teenagers. We feel we deserve some time of our own (we have not enjoyed "retirement" yet) while we still are able to enjoy some freedom.
I refuse to let anyone make me feel guilty. I am not moving her in with me (same issues you have with an inaccessible home), and she cannot stay on her own much longer.
Thanks for your post, which is a guide to what I need to do. I hope this all goes well for you.
There is no one size fits all as far as these decisions go. There is no right way and no wrong way to navigate caring for an elderly LO because everyone's story is different.
I know when my time comes I will be going to AL because I do not want my daughter to go through what I did.
Your mother is lucky to have you in her corner.
why not live in a nice place with food prepared, your apartment cleaned, activities, helpers to give me assistance, and people to socialize with ?
ignore those bad-talkers and remember what i just said. They are ugly people who are not your friends.
She is safe.
She made the decision to live in AL.
If people have a "problem" with YOUR mom making the choice to reside in an AL community then THEY can talk to your mom about it.
I have written and deleted so many comments but there just is no "good" comment that I can make about people that butt into others lives when they have no idea what is going on in the background.
So just smile, grit your teeth and take a sip of water (try not to choke) and change the subject.
This lady decided to tell me all about how she took care of her mom, and she would never put her in a NH. It was a long line and very busy, and I couldn't get outta there fast enough.
It honestly never ends , with people having that opion
Way back in time, there were no such places around for seniors to move. If one had dementia or a physical disability, they went to the County Asylum which were dark dank places with unsmiling faces. And from one generation to the next, that is how nursing homes and such places were presented.
Not once did I ever get any negative feedback when my Mom had to move to a skilled nursing home (she now needed a village), and when my Dad moved into a senior facility (it looked like a Victorian hotel) which he loved.
Any one that thinks enough isn't being done or something should be done differently is more than welcome to do it themselves!
I got tired of the manipulations real fast.
I've gotten to where when someone has their latest great idea of what should be done, I immediately say "I'm doing all I'm willing to do already so I won't be involved in this". Then I don't hear anymore about that idea because they themselves are not willing to do it.
It sounds like you've done very well for your mother. Don't let anyone tell you differently-or at least put earplugs in.
My mother is very happy in her AL. She picked it out herself, starting in Independent Living. She is very social and enjoys all the activities being with her friends. Now that she and most of her friends can no longer drive, she would be miserable at home with only a caregiver and occasional visitors. I am so grateful she planned ahead.
Now, for the people sharing their less than favorable opinions with you about your mom in AL, they are fools, and their opinions are worth nothing, so don't give them a second thought. If they have nothing nice or actually helpful to say to you, they should stay silent.
The quote "Better to remain silent and be thought a fool than to speak and to remove all doubt.", often attributed to Abraham Lincoln, is very fitting in this case.
If it comes again, you say “Well I suggested that you could take her out for a weekend, and you didn’t seem to be interested. Let me know if you change your mind”. Let them try to justify their position. You don't have to justify your own.