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Author: NewAtFoolSchool One star, 50 posts Add to my Favorite Fools Ignore this person (you won't see their posts anymore) Number: of 150  
Subject: Re: Suppossed help from SS and local Gov't agenc Date: 5/29/2000 2:27 PM
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Warning, this has become a very long post, but I think it may be helpful for you. I hope you can wade through it all.

I am sorry to hear about your grandfather death and the problems with your grandmother. The "system" can be very frustrating. My mother (68 years old) has been "terminally ill" for the last 3 1/2 years and we have pretty much run the gamut of different kinds of care: from in home, assisted living, to nursing home. Sometimes the rules the goverment has in the name of preventing fraud are crazy! Insurance companies aren't a whole lot better.

Our expeirience with nursing homes, has been different than your perception of them. My mother is currently living in one because she is unable to transfer from her bed to her wheelchair without a vanderlift (a machine that lifts mom in a sling out of bed, into her chair). She is very tall (5'10" and weighs 175 lbs) and can't bear any weight on her legs at all. It would be very unsafe for her to try to stand at this point.

She would be in a bed, no movement

Mom does spend most of the day in bed becasue she tires too easily sitting up and can't do it for more than a few hours at a time, but they get her out of bed for meals and she does choose to go to some of the activities they have. If it was up to her, she would probably spend all day in bed, but it is better for her to be up a few hours a day.

a catheter for her incontinence

Mom is incontinent and has at times had a cather because of medical problems, but currently uses adult disposable diapers. She much perfers to have the aids take care of this than me. She hated it when she was living in my house and I had to change her diapers, it was embarrassing for her to have her daughter do this. No matter how many times I was glad to help her her, she was humiliated and really didn't want my help.

This would be for her good, because 24 hour round the clock care can be provided.

Even if my mom could transfer herself, she needs the 24 hour a day supervision because of mental impairement. Part of the reason she can't stand now is because she broke her hip while living in an assisted living apartment. She had balance problems but one night decided to get up from bed without her walker and go to her kitchenette to get a drink of water. She fell and broke her hip. She hasn't been able to walk (or stand) since.

It was very hard when she was living at my house and needed 24 hour care. Mom wouldn't accept care from anyone else in my family but me. I have 3 school age children and was basically unable to be much of a mother to them while I was taking care of my mom because if I didn't attend to her right when she wanted something, she would try to do it by her self (very dangerous with the balance problems she had at that time). I couldn't even go the grocery store without worrying. One day, while at the store I received a 911 page. My husband said my mom had tried to go to the bathroom by herself, for some reason she had pulled her pants down in the hall. The bathroom was occupied, so she walked back to her bedroom with her pants down and sat in a chair and had an accident. She was stuck in the chair (she had problems standing up and that chair was a very low and padded so she couldn't get a push up our of it) wet and dirty with her pants around her ankles, wouldn't accept his help, and I needed to get home right away to help her. Things like this were common. Mom and I learned to laugh about the situations we were in, but it was often very frustrating for both of us too.

We did have aids that came in that bathed her and also aids to stay with her one day a week so I could have some down time and to get out of the house. We also had aids in 5 nights a week to help her to the bathroom at night. She wouldn't call me to help her at night because she didn't want to "bother" me when I was sleeping, but she couldn't walk safely by herself at that time, so I didn't sleep well becasue I always had one ear open, listening to the baby moniter we had in her room, in case she tried to get up. Because of my exhaustion, the aids at night were necessary. After a year of living at my house and a lot of therapy we got her to the point she could go to the assisted living apartment, but you know from above what happened there.

If your grandmother is living on her own, make very sure she is as safe as possible. There are people (Psychologists for mental abilities and Physical and Occupational Therapists for physical abilities) who can evaluate her to make sure she is safe to live on her own. Even with that there is a certain amount of risk as the above example shows. My Mom's therapists and I (I'm and OT) thought she was ready, but we all knew there was some risk when she moved into the Assisted Living Apartment. She could decide not to do the things she needed to do to stay safe. Assisted living facilities have 24 hour staff available for help, but not 24 hour monitoring. She had wanted to go there, she wanted her independence and even after she broke her hip, she told me it had been the happiest time since she had gotten sick. She didn't like depending on family members.

If your grandmother is, or in the future does live with your father, make sure he gets breaks (more than a couple of hours, occationally a few days off). 24 hour care is too much for any one person to do for long periods, no matter how much you love someone. When my mother was in the nursing home the first time and was coming home with me, the staff was very leary about me taking care of her at home with her level of need. I thought with my training as an OT it would be OK, but we soon found that I need much more help that I had origionally thought. In retrospect, looking back 3 years ago, they were right. I have great respect for people who do 24 hour care for invalid family members.

She...still has her cat

In some nursing homes, residents are allowed to bring their oun pets (within reason of course, horses would be a little big). The one my mom is at has pets on the Alzheimers wing and the aids and nurses bring in their dogs regularly for the residents to pet and have sit in their laps. They have regularly scheduled pet visits too. Families can bring in family pets for visits. The medical director at her nursing home is very much in support of the Eden approach and is trying to get more animals in. he would like some sort of animal in each residents room if they choose to have one.

3 meals a day - food that I certainly wouldn't eat

I agree, the food isn't the greatest, but it has to be cooked so that all residents can eat it and many are on restrictive diets, so no salt and little spicyness, however, my mom can add all the salt and spices she whats to her own. We take in food for the resident refrigerator too so if she really doesn't like the meal, she has something in the freezer they can heat up for her. (She likes the little frozen pizzas and ice cream). Food at some of the other nurisng homes in town is better, but we chose the one she is in for other reasons and food isn't high on her priority. Because of her neurological problems, she at times hasn't eaten at all and at one time had a feeding tube into her stomach.

She's with her family

I go visit my mom almost every day. I can relax more now when I am with her because the physical demands of her care aren't all on me. Our relationship has become much more the normal mother/daughter kind of a relationship instead of the patient/caregiver relationship. One day, when my mom was living with me she said, "You know, I am still your Mother." And she was right, I was being bossy, but she wanted to walk by herself which was totally unsafe and I was insisting on helping her. It is so much better not being the "bad guy" who inforces the rules.

My family goes to visit her. She enjoys their visits. She didn't enjoy the noise three kids make while she was living at our house. My brothers, who all live out of state, come to visit and call often too. They will call the nurses station if they have any concerns. At her last care conference, (a quarterly, required meeting with caregivers from all the departments that care for her needs: social services, nursing, dietary, activities, therapy, etc. Residents and/or family members are encouraged to attend, though many don't) the staff told me that the residents with family members who are there a lot are the ones who get the best care because the residents often will tell family things they won't tell the staff becasue they are "being polite and don't want to complain". I had had some concerns at her previous care conference and they were all taken care of including some things about their staffing policy that I thought weren't in the best intrest of Mom's care. They have changed the way they staff the nurses aids because of my concerns (and it has improved things). They told me they appreciate families voicing their concerns and to never feel like I am "complaining", that it is important for them to know when things are not going well.

For this munificient amount, she can be cared for at the states expense for th eremainder of her life.

Why does the gov't seem to feel they can dictate to people and basically steal from them? Understand, while she has any assets left, g'ma would be paying $3,000-5,000 a month for her care. While the gov't would continue her care after she was broke, they'd then pay the Medicare approved rate for the same care. Sounds fair right?


I guess I'm not entirely sure what you mean by this. Yes, nursing home care is expensive. We pay over $4,000 a month for my mother's care. She has a Long Term Care insurance policy that is currentlly paying for her care and we have sold her house and are setting up her finances so that hopefully with her pension and ss we can keep her in her private room as long a possible. As I said earlier, she has been terminal for over 3 years but has continued to "fool" the Drs. every time they thought she was going to die (4 times so far, including one stint on Hospice care), so we want to do what we can to preserve her assets. Yes, all her money may be gone some day. Even with great medical insurance, the first year of her illness decreased her assests by $70,000, but that is what she and my dad (he passed away a month before she was diagnosed with cancer) saved for, to pay for their old age. If all of her assests are gone, the goverment will pay for her care. I am thankful for that because it is a lot less straining than if my brothers and I had to come up with the $4,000 a month. The only difference in her care would be that she would have to move from her private room to a double room. She would not be confined to bed, she would still wear diapers, no catherter unless there is a medical reason for it. (Actually, catheters are a pain in the neck medically and can cause problems of their own, but for someone isn't voiding completely, they can prevent bladder infections and other problems. Also, the catherter only takes care of urine and the diapers are still needed for feces.)

Look ahead for possible future needs and pay for these while she has assets. Because of progressing weakness, my mom needed a new wheelchair that tilts a little and has pads on the sides to help her stay sitting up straight. We got that now while she has assets. Medicare/Medicaid paid for her regular wheelchair, but would not pay for the specialized one she needs. It was expensive, but again, that was what she had worked for and saved money for, to cover her needs when she is old.

The latest is the scariest. If we let them in our lives, they can decide to remove g'ma from our care and place her in a nursing home.

I'm trying to get Dad to NOT talk to them anymore - I'm afraid of what they might try to force us to do.


The only way you could be forced to put your grandmother in a nursing home is if she is being abused or neglected to the point that she isn't safe and is in danger. Then, there would have to be legal procedings giving gardianship or conservertorship to someone, possibly a social worker. You can avoid this by making sure she is safe and well cared for. (See above about having her evaluated. If it comes to that, you would have an objective evaluation on your side. Or, if she really isn't safe and needs 24 hour care, you would know and can take whatever steps necessary.)
Not talking to them is likely to make them very suspicious and cause them to nose around more.

Nursing Homes aren't home. The care given there, although good, isn't what someone would get at home. They don't have one on one staffing so there are times when needs of one resident have to wait while the needs of another are being taken care of. Home care is the best, but unfortunately, sometimes a nursing home is the only option. Realizing this and accepting it is the best way to move on, make the best of the situation, and get the best care you can for your family member. The family members who what someone to answer a call light the second their loved one turns it on, drive themselves (and the staff) crazy. What they want is impossible. Working with the aids, supporting their hard work, and being part of the "team" is more effective in getting good care. Staffing enough aids so that someone can be there as soon as a light would go on would probably make nursing homes cost $8,000 a month or more! The part time help I had had at home for Mom cost as much as the nursing home does (and her LTC policy didn't cover much of it).

You give yourselves many more options if you plan ahead. Look around at different facilities now. Drop in unannounced and ask for a tour. Ask to eat a meal. If you have time, volunteer at one or two you like and get to know the residents and watch how the staff relates to them. My mom is a private pay resident now, but when and if she needs to transfer to Medicaid, she will be first on the waiting list for a Medicaid bed (there are a limited # in each nursing home) in the facility she is in (a good one). If your grandmother really needs 24 hour care but you wait until she quailfies for Medicaid to start looking for a place for her, you may have to take a room at whatever facility (they are not all created equal!)has an open bed. If she needs the care, it would be to your grandmother's advantage to go to a good facility while she has the assest to pay for it and spend down her money there. She will have more options on where to go. Some of the better places have waiting lists. (When my mother broke her hip and had to go back to the nursing home, she only got in because she had been a resident there before and her Dr. is the medical director. That bumped her to the front of the list and fortunately a bed opened up while she was in the hospital.) Then your grandmother will be first on their list for a medicaid bed when her assets run out.

I know you are having a frustrating time. I have been on the phone for hours with the "System" and they are a bureaucracy and often don't seem to have any common sense, but it is the system that you have to work with and I have found things go a lot better if I take a deep breath and am patient with them. I have been told, "We like working with you because you don't get mad and yell at us like some people do," when it was all I could do to keep from yelling, "That's because you are all idiots and your policies are stupid." Actually, some of them have turned out to be very nice and helpful. Find those people, write their name down, and ask for them. Wait on hold for them if you have to. Try to get their extension number if you can, it saves a lot of time!

I'm afraid...

I hope all goes well with your grandmother, but don't be afraid of the future. Take charge of what you can while at the same time learning to live with what you can't control and making the best of it. Life isn't perfect and doesn't always go the way we want. The only thing about life I know I can control is how I react to it.

Sorry this has gotten so long.

God Bless,

Chelli
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