Mom says that she wants to move into an assisted living center back in her home state.
She has mobility, heart, and swallowing issues. My understanding is that meals are not served in rooms or it costs extra. Mom would not be interested in the amenities such as an exercise room etc. Also how to residents get to doctor's appts., go shopping, or pick up prescriptions? Mom seems to think all these things would be taken care of for her. But, from what I have read, you are basically paying for an expensive apartment with some 24hr assistance.
Could someone give me the straight story? thanks.
Lilli
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JulieWI--- BRAVO!! I agree with you entirely! Well said!
Lilliput--My mom is a lot like yours and I ended up moving her to AL (near me) 900 miles from her hometown because there was no one left to help (including my sister who lived 3 hours away). There was always drama and I have racked up a lot of frequent flyer miles. Finally, it came down to her Dr wanting her placed into a nursing home, so that motivated her to move her to AL here (they did not have AL where she lived). Even with her Alz. she was able to make a choice--Nursing Home or AL. For her, it ended up being a an easy decision by then, and she finally came back with me permantly.
Even with all the care that my mom gets at her place, I know she'd be miserable if she was "back home" even if they had AL. Her friends are dying or sick, but she still idealizes it. She's beginning to admit that she needs me to handle many of the things that AL does not. I hope you get things settled once and for all because the upheaval was a huge drain for me. Having her here is simple, but having her back home, 900 miles away, would be the same nightmare it was for the last few years. Good luck.
My Mom misses her home, but she is getting adjusted to AL. The one thing she always mentions is just how SAFE she feels there. I drop by at all hours and sometimes eat with my mom in the dining room. I've observed the staff and they are incredibly kind and patient. I enjoy visiting Mom there and she enjoys a sense of independence. For our family, it was the best decision for all of us. I can see Mom whenever I like, take her shopping or out to lunch, but when my husband and I take a trip I know that she is well cared for and happy. I did a lot of research when looking for an AL facility for her. I talked to many the residents because they would be the first to complain. Everything I heard was positive except for a few who weren't wild about all of the meals (that's to be expected I suppose). I feel that AL is a bargain when you consider all of the services and comforts they provide. I took my mom there several times for visits before she actually moved in and that made the transition easier. I also brought many of her things from home which was also a help. Mom calls the place "The Hotel" and that's the feeling you get when you're there. It's clean, nicely furnished, spacious, and has a soothing color scheme. If you can find the right AL, it can be the best thing for everyone!
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Perhaps a better question to ask is "why should someone have to shoulder this responsiblity alone when the have a perfectly healthy sib sitting at home who does absolutely nothing to help." Strangely my sib is never criticized.
Brut: I have been my mother's sole caregiver for nearly three years...and many years before that when she lived in her home state. In addition to all the glories of caregiving, my hub just lost his job, we are trying to prep our home to sell in a depressed market, I am trying to hold on to my full-time job, and I am sure that we will have to move within the next six months. If I think of myself at all it is to save my health and sanity so I can help her. Please think through your comments before you post. thanks.
Lilli
In this situation that so many of us find ourselves in, I think that the needs of all parties should be acknowledged and considered. True, many times the caregiver's needs cannot be met, but at least figure out what they are and think about what can be done.
Compromises should be made by everyone. The person who needs the care shouldn't get everything their way just because of the situation they are in. No one should.
In case anyone wonders - I'm caregiver (with my brother) for my 63-year-old Mom with Stage 5/6 Alz. She and my brother both moved into my home a year ago and it has been very hard on me. I work all day and then go home and deal with everything there.
By the time I get home, bro needs a break, although he is really good if I come home late or go out with friends. (I'm very lucky there.) For the most part, Mom gets whatever food she wants (within reason), chooses TV shows, decides if she wants to take a walk or stay home, etc.
Now Mom has started going to adult day care 2X per week. She doesn't like it and wants to quit. We still insist she goes and gives it a fair chance. This is her compromise for us.
The reason I moved her across the country to be here is that no one at HOME was willing to help her out on a regular basis and her health and mental state were declining rapidly. I know that if she goes back, it will be more of the same even IF she is in an ALF.
This has been the battle of our lives: realism vs. fantasy...she can live in fantasy land because I do all the "real" stuff for her. I can logically point out all the advantages to staying here, but the next time I see her I hear the same old patter. Now I just ignore it and do what I think is best.
She may be suffering from short bouts of depression, but who doesn't. I am overwhelmed right now so it would be really nice if she would just relax and enjoy the good health that she has. Don't think that is too much to ask....
thanks for your input,
Lilli
I am getting through it. Some days are just fine. Today is just a bad day.
it is hard. I have brothers and sisters but sometimes I wish I were an only child so I could just make the decisions with my dad and have it done. Now I have to deal with everything. Spend every minute thinking about my dad and if what I am doing is right then I have to spend time after time after time going over every story every problem with each brother and sister because they are too lazy to go visit dad themselves.
Sometimes I just want to run and jump in the lake so I don't have to make decisions, drive 180 miles twice a week, try getting hold of my dad on the phone and wondering why I can't, fighting with the nursing home staff about medications, and then having to repeat the stories to my worthless brother and sisters.
I take an anti-depressant and it helps some but most days I just want to stay in bed and hide. Or watch TV or read a book and forget everything else. When things are bad with my dad I hate to even hear the phone ring. Right now things are really bad with my dad and I have had to cancel 3 small vacations in a row with my husband.
Sometimes life doesnt' even seem like it is mine. I neglect my husband because I am so preoccupied with trying to make my dad's life worth living. I am just the type of person who cannot compartmentalize and get on with my life while this other life is going on.
People live to be 90 - 100 these days so I figure the next 20 years of my life are just shot. I simply cannot be happy and go about my life while my dad is miserable. My brothers and sisters can.... but then they all have such dramatic lives that they keep themselves occupied.
i wish I had NEVER retired early. I should have kept working so I would have had an excuse not to get so involved and invested in my dad's care. I also am in my early 50s and my parents and in-law are only in their 70s and already are needing help big time.
You way "who am I?"
You may be the one who gets a phone call to "COME AND GET ME" the first time she has a run-in with the staff or another patient.
But then I am just reliving my dads first months in a living center home.
:)
I know what you mean about the social atmosphere.
My MIL stays in her room by herself most of the time. She is slightly paranoid and seems to think someone will take her stuff so she sticks to her room a lot.
They can lock their doors, they have their own keys.
My dad is in a large nursing home which has many more functions and staff. He is social but on his terms so he has had a bad adjustment to getting along with others and not always having his way.
He is not well now and is having a hard time with the nursing home staff making him take showers, making him get dressed, making him get up for meals. I think he should have the choice most of the time but sometimes the staff pushes him into doing things he doesn't want to.
It is hard once you hand control of your LO over to someone else.
As long as your mom has her wits about her she should be okay and able to control her life.
My dad is on way too many medications so he doesn't have a lot of control over what happens to him.
I think the most successful people going into any kinds of Assisted Living or nursing care are the ones who are on NO or very few medications.
That to start with is a HUGE plus!
You may want to consider this so your mom does not have to move from facility to facility after she gets comfortable in one.
My MIL is in a facility that cost nearly $4000 for a room, meals, transportation, and a very very very small staff.
She is getting more frail and will soon have to leave that place and find a nursing home. That will be another hard adjustment for her. They charge a lot at the place she is now but do not want her once she is not easy to take care of.
Just to think about - how long will they keep her if she can't take care of herself.
That's a site where you can see photos, and all that.
Your state will have a similar site. If you find that, you will see what I mean. There is info as to complaints, and that's a good indicator. However, someone may complain b/c they are competitors too, though it's rare because the complaint can turn into a liability for them and they don't often risk their own license to hurt another.
Anyway, some sites have more info and I pay for some sites. There are also a few others nationally, where you can search.
Get a list of 10 and drive by to see the area. Again, they say with charter and magnet schools (a concept here you may know of) that you're not sending the kids to the Neighborhood, you're sending them to the School but yes, I know the general atmosphere is important to family members and thus to the seniors.
People asked why I bothered with stainless appliances, and I wondered what they're thinking! This is a Home, where these folks will spend the rest of their days... A bit of sacrifice up front will make things pleasant for them. And I feed them shrimp - someone in the industry saw it on the menu and said it's the first time she sees it at an ALF (visiting nurse) and I asked if she feeds her mom shrimp or cooks it for the family... She said yes but you know... Well if we want it, maybe they want it too!
OK, it's high sodium so not often, but we serve pizza and beer once a month too - lite beer and a small glass, but it's fun for them and they're Adults after all, too.
It's easy to get so caught up in Medical care and pills that we forget LIFE.
Love you, girl, be kind to yourself too. Make a chart with pros & cons columns so that you can keep track on things like cleanliness, food (go at mealtimes so you can see Reality vs the menu if it's smaller places you visit) Of Course the big ones have a chef and all the equipment.
ambiance, and ask to see their scrapbook - but don't hold it against them if they don't have one. We just got around to starting ours.
It's important so that they can reminisce about the party or trip to Lion Country, and I'd neglected that bit b/c I thought of it as "record-keeping", but I see now how excited they are to see the photos change on our digital frame. Technology is wonderful - we're getting a Wii soon!
Someone said Smaller is Better, and that's my profound belief. I'd be burned out by now, trying to care This Much for 20 people or more.
Doreen
There should be an Area Agency on Aging, or an Aging and Disability Resource Center near you. Here, those are the names that are most helpful. There is also a CARES unit that's part of the Dept of Elder Affairs nearby, probably covering a county or two, so it's reachable.
I go to Google and put in a couple of words, like ADRC Aging Disability for example. Then Scroll ALL the Way Down and see "Search Within Results" bar - In There, I put Senior Healthcare or Assisted Living or some other one or two word phrase.
Why? b/c you get Too many results and too much chance to get hijacked by spammers if you put in too much at first. Google is awesome b/c of this narrowing down feature.
As far as living with you, Yes, that is wonderful too, but don't try to go it alone.
Medicaid may pay for Half of the ALF care, for example, but they often pay for ALL of Daycare - Which can be All it Takes to lift the load for you. While you work and care for your kids, she's taken care of, occupied, and there are trained medical people watching her reaction to, and giving her on time, her meds, etc.
That's truly the best of both worlds - mom at home at night/weekends and cared for during the week by professionals, so she is not isolated or subject to fall or get disoriented when you're out.
Mobility is a difficult subject to understand. I saw someone said they prefer the nursing home b/c they get more help or are not bedridden.
Actually, the Law says they can be in assisted living only if they're NOT bedridden - but the big places with Apartments don't give nearly as much help as small ones. And they don't know if people eat well or have a UTI until it's Obvious and they're declining.
Nursing homes can be much more neglectful than the ALF where the senior has access to the few, Known and trusted caregivers. But they are great for those that need Nursing care, with very little ability to help themselves.
Our first resident could not lift his head, had to be fed, was on Hospice. He could only stay if he was on Hospice or if he could transfer with help, within a short time. So we fed him well, paid attention, made him less fearful and showed him we were there for him.
This man weighed 103 lbs and was out of his mind almost daily, seeing things and all. The nurse said do Not get attached to him - he is on his way out, 3 days or 3 weeks... He wouldn't last a month. That was September 2009. Last week, at 145 lbs, he was laughing and dancing with his wife at a party! I'm so Thankful to be able to do this work, and I believe God gave me this job and calling, through the heartbreak of my dad dying because he feared death less than a nursing home....
It's about Quality of Life for seniors and their caregivers. You are all heros because you try your best to help your folks and I thank you for that.
Doreen
Doreen: thanks for letting me know that there are caring environments out there. I did try to get Va benefits for Mom....after mounds of paper work, they said she made a little too much in income (Mom said that she did not realize that she was "wealthy" :o) Your ALF sounds like paradise compared to the few I have investigated. I will have to look further...so much drama happening in my life, I barely have time to breathe!!
thanks to you both....this forum is my life raft of sanity...
Lilli
I see such caring and support here, that's wonderful. But there's a lot of variation in senior care and much of it is so profit-motivated. I can tell you a lot about Assisted Living, most of it very good, from personal experience.
If you move your folks in with you, that can cause more problems sometimes - but you love them and want to help them. I know more about Florida than any other place, but Medicaid and VA are National programs, administered at the State level, so they're pretty uniform.
Why am I talking about money when you asked about care? Because the reality is, mom will get what care you can Afford to give her. You must factor in your health and your own family's well-being when you're counting the cost, too. If you have kids, they can be seriously affected by the time and attention you pour into caring for your mom, and can be short-changed. It can also be a learning experience for them and for you, and prepare everyone for the fact that life is transformational and nothing is forever, but that as things change, we can respond in loving growth for ourselves and those around us.
So please contact someone who can help you with benefits - if your dad or stepdad was in the armed services, she can get VA Survivors' Benefits. The veteran themselves get more, nearly $20,000 per year, but the surviving spouse (even in some cases divorced if they never re-married another person) can get over a thousand a month.
Medicaid has a program in most states similar to Florida's (my home state) that pays about Half the cost of Small ALF care. Here, it's called the Diversion program (designed to divert seniors from being forced into a nursing home) That's a Godsend b/c Smaller is Better. It's like living at home with family. The seniors Become a family, watching out for each other. They have company, a social life, activities (when it's done Right, mind you) and this can be so much Better in a smaller place.
Three things are Key when it comes to senior care:
Nutrition (Assisted Living Facilities of all types must have a menu by a registered dietician but the taste and quality vary widely) At Angel House, my non-profit Home-ALF and senior advocacy, we spend 2 to 3 times as much on food, because we feed only whole grains, unrefined sugars and fresh fruits and veggies. That's costly but so Improves the Residents' health!
Activities and Socialization - again, the law dictates a schedule for offering it but we can't Make them participate. The important thing here is that the place is small enough to Notice who likes what and to tailor the activities so that all will participate and have fun. We take our seniors to local south FL attractions (even if it's an hour or two away) and we have parties, BBQs, pot luck, go to concerts in the park, pet therapy, music by entertainers in our home (we have a piano & computer with webcam and skype).... Whatever is fun and stretches them so that they feel accomplished, independent, adult, and have as much freedom as we can safely give them. A degree of isolation is unavoidable, but they feel much more a part of things here. That gives them hope and dignity. They can talk about whatever is on their minds, whether it's bowel movements or music, and be understood and accepted by their peer family.
And HealthCare with a focus on Home
Our doctor visits monthly, more often if needed. Nurses come in between, and the podiatrist is there every other month. Physical & Occupational Therapy are paid by Medicare, if the senior has an advocate who knows the ropes and how to get it for them. This keeps them stronger, more active and healthier. At the same time, it is fun for them, and they love the extra attention. Not all ALFs do these things, and surely not to the degree we do.
But they should. And that's why I'm ready to form a group of smaller ALFs to Show them how they can enrich their programs without breaking the bank and budget. Imagine if we get Ensure by the Pallet instead of the case, and do more creative activities with the savings?
We have to be much smarter than the big places to compete with them, but we win every time for the seniors with hands-on individual care at the small places.
Please let me know if I can help you find something. I'm here to help.
Doreen
Are you SURE living with you for a while is impossible? Invite her to spend a couple of nights and see how she feels. She might complain all the way to the front door and then she'll be fine. If you arrange something to occupy her while you're out, ensure she can work the TV, has a comfy chair - she might be okay. I had Mom with me for a couple of months and it was great. I had her help me with meals by peeling potatoes, drying dishes or folding laundry at the kitchen table. She was her old self during that time and we laughed a lot. She didn't mind being alone during the day while we were at work and was even able to do a few things without us, it helped her feel like she was contributing. If you can't have her there, don't feel bad. It takes a lot of patience from everyone.
As far as wanting to go "home", you can tell her it's not safe. I use a similar "mantra" with my own Mom. You could tell her the ALF there is full, that she can't afford it, that they won't accept medicaide - anything to make THEM the bad guy not YOU. You can also put problem solving back on her - ask her who will take her to the doctor, to the pharmacy? You'll probably be met with silence.
My mom is in a nursing home and it's actually a much better place than the assisted living facility. Mom's and most of the residents are in wheelchairs, not bed ridden. Most are in their right minds but have arthritis, parkinson's or other ailments that make it impossible for them to live alone. Mom calls for help when she wants to move from her wheelchair to a recliner or to the bed. She also calls for help to get to the toilet. They have a regular schedule for showers and grooming and for meals - and help residents get there if they can't make it themselves. There is on site physical therapy and occupational training to help residents do as much for themselves as possible. Mom does what she can but when she can't do something for herself all she has to do is ask. I'm actually happier with her treatment at the nursing home than I am the assisted living facility.
Regarding her mental state, has she been evaluated for a urinary tract infection? Is it possible to give her a low dose anti-anxiety med or anti-depressant? This might help ease her anxiety about being alone at night or moving in with you.
Good luck!
It is frustrating for me because there really is not a good fit for her. At an AL facility she would not be able to get to the cafeteria on her own. She can get dressed, get to the bathroom, and bathe...but cannot do long distances without assitance. ALs are so picky about mobility - if you cannot get around easily, there is very little or no assistance. (once again, for what you are paying, there should be more "customized" care!)
Mom does not need a NH facility because she is of very sound mind and does not need to bed ridden.
And her apt. now is not the happy place it seemed to be for her when she first arrived.
She has stated adamantly that she does not want to live with family.
So what do I do?
I am getting calls in the middle of the night with complaints of various ailments. I take her to the doc, suddenly those problems magically disappear or she starts complaining of new ones. She goes on crying jags and when I offer various solutions, none of them is the right one. As the saying goes, I feel like I am "straightening deck chairs on the Titanic." I put out one fire and another springs up.
Lately, she has been pestering me to hire someone to stay with her at night. I worry about someone being in her home for long periods of time unsupervised, even IF I could find someone willing to do it. Mom is always worrying about spending money on herself, yet she's okay with hiring this expensive baby sitter to sleep over and basically do little else. I finally had to put my foot down and tell her that this is not a good solution and that maybe giving assisted living a trial run would not be a bad idea. Her immediate response is "I want to go back home." (btw, there is NO ONE there to go home to and NO ONE willing to take on the responsibility.)
Should I let her go back to her home state and try to find a good AL facility. How will I care for her long distance? If there is no one checking in on her, they will just leave her to her own devices.
To this day, Mom does not realize how much we do for her - don't want a pat on the back - just want her to know that it will not be the same there as it is here.
What do you do if you are a realist trying to help some one who lives in a constant fantasy state?
I am exhausted.