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Early-Onset Alzheimer’s Assistance | Illinois Estate Planning and Elder Law Attorney

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February 25, 2014

- Alzheimer's Care, Chicago Suburban Elder Law Attormey, Eldercare Attorney

What happens if you or your loved one is diagnosed with early-onset dementia? This typically means that the patient was diagnosed before the age of 65. Unfortunately, there are not very many resources for those who have early-onset dementia, but there are a few things that a caregiver can do:
  1. Look for a senior day center. The staff will be well trained in dementia care and they’ll know the right ways to interact with your loved one;
  2. Have your early-onset diagnosed loved one volunteer in a senior day center like the type I mentioned above. This will ensure that they are in a safe environment while also giving them a sense of confidence; and
  3. Talk to local nursing facilities.  Some facilities have day care or memory units that may fit your loved one’s needs.
Resources like these have become more and more common in recent years. Even if you don’t have a senior day center in your area, don’t worry. There is plenty you can do. -Anthony B. Ferraro
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How can we encourage a more collaborative spirit, rather than “them vs. us,” when it comes to my mother’s nursing home staff? ? | Chicago Long-Term Care Planning Attorney Anthony B. Ferraro

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August 22, 2012

- Alzheimer's Care, Blog, Elder Law Articles

First of all, for family members: When you first admit a loved one to a nursing home, you should get to know the staff. Let them know that you care about their well being (in addition to your loved one’s) and that you would like an open relationship so you all can discuss issues concerning your mother’s care. Inform them about pertinent information concerning her and her life — what she likes, dislikes, any habits she might have, typical moods, and what seems to work when approach her in different situations. The more her caregivers know, the better they can care for her. Compliment staff members when you learn about them doing something you like. Be involved at the facility as much as possible. Attend social events and family council meetings if you can. One good example of relationships being built very well involves a man who took a picture of his wife and the staff on her unit. He had an 8-by-10-inch shot of it made and wrote the name of each caregiver underneath it. When placed on his wife’s closet door, it served as an aid to helping her recognize the people taking care of her. It also made the staff members feel very included. It made them feel important and let them know that the family really cared about them. This gesture built a lot of good will and enhanced his wife’s care. To the staff: Don’t be intimidated by residents and/or their families. You are the frontline worker, an honorable position. Without you, there would be no care for their loved one. That is a compliment of the highest order. Show interest not only in the resident, but also his or her family. Introduce yourself and tell them a little bit about your background, your interests, how long you have been a caregiver and why you are in that line of work. When family members enter the unit, greet them cheerfully and give them information about their loved one, whether the news is good, bad or indifferent. What many caregivers don’t think to do is call a resident’s family if something good happens during the day. These are blessings that can be few and far between for family members, and they’ll go a long way. Unfortunately, there can be stigmas about nursing homes and their caregivers. For the most part, these workers are intent on doing a good job and truly care about what they do and who is in their charge. Everyone needs to work together to overcome negative stereotypes so residents will have positive experiences in their new home.
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My mom thinks, after a few sessions, that her doctor-ordered speech therapy is a waste of time. Should we put up with the stress of forcing her to do this if she doesn’t want to? | Chicago Long-Term Care Planning Attorney Anthony B. Ferraro

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August 9, 2012

- Alzheimer's Care, Blog, Elder Law Articles

You better go talk to the physician involved before you assert yourself here. Also, discuss this with the speech therapist to find out what type of therapy work your mother is undertaking. The therapist should have her individualized care plan available to discuss. It should include a goal and various steps for meeting it. Speech therapy does a lot more than most people realize. It is not just about talking more clearly. Some of the most important work may have to do with swallowing issues, which can be quite dangerous if not addressed appropriately. As Alzheimer’s disease progresses, for example, swallowing becomes more difficult, sometimes to the point of being life-threatening. Choking is a big concern. Speech therapists can assess such situations and apply therapies as needed. Rather than just having a person form sounds and letters, speech therapists also conduct swallowing tests on people with dementia — sometimes with the use of X-rays. These can help form care plans. It is easy to see why an Alzheimer’s patient might not understand all of this. You probably will want your mother’s doctor to explain the seriousness of the situation to her, and why the speech therapy is needed. Then, if your mother complains in the future, you can rely on the authority of the doctor. You also will both be more knowledgeable and familiar with the reasons for speech therapy.  For more information from the Alzheimer’s Resource Kit, click here.
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I am going to be president of the new family council at my dad’s nursing home. I plan to have a rep from each department give a description of their duties and responsibilities and then invite questions. What should we do after that? | Chicago, Illinois Elder Law Attorney Anthony B. Ferraro

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August 8, 2012

- Alzheimer's Care, Blog, Elder Law Articles

Having a leader from each department is a very good idea. The more the communication, the fewer the problems, in theory at least. When you hear from the department leaders, it will give you a good picture of their responsibilities, and why they do what they do. It’s not always clear to us and can lead to unanswered questions otherwise. Sometimes, there are health department, state, federal or other regulations in place. It’s easier for you and other resident families to deal with when staff members’ routines make more sense. Work on building relationships between staff members and the residents’ families. Invite different staff members to attend your meetings. Remember that nurses and other direct care personnel are very important — not just the department heads. They are usually the ones doing 90% or more of the hands-on caregiving with your loved one. You better believe their input is important. As a group, a family council can develop a method(s) for more effective communication with facility staff if a complaint or concern arises. When something does come up, it then ought to be less threatening for everyone to sit down and resolve it. The council also should consider developing a good way to deliver compliments to staff members, via proper thank-you notes, for example. Plan for picnics or other get-togethers so staff, residents and family members can spend relaxed time together. Treat everyone as family. The council should not simply become a gossip or complaint forum. The meetings also should be structured and effective since nobody wants to waste time — staffers and non-employees alike. For more ideas on what you might do or include, you can call other facilities and ask how they run their family council meetings. Best of all, speak with the actual officers of the family councils at other places, not just staff members or directors.
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Since my father just wandered from his nursing home, could it be that he’s placed inappropriately? | Chicago, Illinois Elder Law Attorney Anthony B. Ferraro

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August 6, 2012

- Alzheimer's Care, Blog, Elder Law Articles

This depends on a number of factors. If he is considered a high-risk case for wandering and the provider is admittedly not suited to deal with it, then, yes, he may be incorrectly placed. But if this was a first or “one-time” incident and staff members say they can handle it from here on out, try to keep your father where he is. It’s good for him to remain in familiar surroundings. (If you think the facility simply is not living up to its care obligations or has been derelict in its duties, then looking for a different facility would be advised.) Having a person with Alzheimer’s disease move can often be traumatic. What makes this predicament particularly difficult is you can’t typically determine if your father is going to wander until the first time it happens. A facility can be caught off-guard by this but then can recover by ramping up supervision to responsibly take care of him. The facility might, in fact, have a very good resident monitoring system available or in place but did not think to tell you about it because your father wasn’t yet deemed a wandering risk. You can do a little research to help determine the next step. Speak with the facility’s activity director to learn whether your father takes part in activities. If he doesn’t or doesn’t take part much, ask the director to get him more involved in either group of individual activities. This will help keep his body active and his mind stimulated, diverting some of the energy that would be used for wandering. Exercise is a good way to spend excess energy You also can look into engaging private duty or sitting services. Consult facility staff about having someone come in to spend one-on-one time with your father. This would still not guarantee against wandering (due to the nature of the disease) but it would be another proactive measure against it. Have all caregivers track whether your father tries to leave the facility, and if staff members are able to prevent or counteract it. If they can’t prevent it, you might need to explore other options. Also consider: Does your father seem anxious or extremely agitated? His doctor might be able to do something about this with an appropriate intervention. There is also the chance that your father may remain agitated enough to wander no matter where he is. Be sure to keep his doctor up to date on the situation. For more information, go to our Alzheimer’s Resource Kit by clicking here.
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How often should I visit my loved one’s nursing home? ? | Chicago Elder Law Attorney Anthony B. Ferraro

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July 27, 2012

- Alzheimer's Care, Blog, Elder Law Articles

This is a great question. The staff at the facility might ask you to stay away for the first few days in order to minimize confusion and let your loved one get acclimated to new surroundings and routines. If this seems harsh, know that it is being done only in your loved one’s best interest. Now, with regard to YOUR adjustment — this is a big part of things, too, you know — keep up talks with your support system. This includes friends, other caregivers, a counselor, other caregivers, etc. You also can keep in close contact with staff members at your loved one’s new home. Maintaining a good working relationship and developing rapport with staff and those who will be closest to your loved one day in, day out can only help. Get to know them. This also will keep you indirectly in touch with your loved one. A good facility will know how to handle the transition period and the adjustments you and your loved one will be making. If you ever become uncomfortable with the situation, do go to the facility. The key is staying involved in your loved one’s care, but at a level that won’t cause you more stress. Once this initial adjustment period is over, it is not recommended that you visit every day. But if you do, try to keep your visits not too long. Spend “quality time” rather than just “quantity time” there. Develop a visiting schedule that works for you and does not add to your stress, which will down grade your health. In most care facilities, you are allowed to eat with your loved one if you come at meal times. Just give advance notice to the kitchen. Also, some providers offer separate rooms so families can get together and meet away from others. This is especially true for birthdays or other special occasions. Just ask. Each resident has an individualized care plan, developed by multiple staff members representing different departments. You and your loved one are always invited to attend these meetings. This is a great opportunity to be involved with a loved one’s care. At these meetings, you will discuss diagnosis, goals, interventions, strengths, weaknesses and more. Some people are surprised to find out they can make care suggestions and express concerns at these meetings, which are held in a “neutral” environment. Depending on the level of care, these meetings take place every 30 to 90 days. You also might want to be involved with family council meetings, which many facilities hold. These are usually held on a monthly basis. Family members and staff come together to discuss upcoming events, facility changes and other issues. You also can be effectively involved even if you can’t physically attend the facility. Just ask other families’ members and caregivers about opportunities. If you want to spend more time at the facility, that is a choice you may make. Some family members are fond of “hanging out” at the nursing facility and make friends with other residents, families and caregivers.
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How will we know when it’s appropriate to move my dad from adult day care to a nursing home, or an assisted living facility? . | Chicago Long-Term Care Planning Attorney Anthony B. Ferraro

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July 26, 2012

- Alzheimer's Care, Blog, Elder Law Articles, Estate Planning, Medicaid and Paying for Nursing Home Care

The answer is simple: When you no longer can care for him at home. Adult day care is just a day service, so it occupies only part of the time. Care at home is still needed for nights and weekends. There are some adult care centers that offer evening and weekend services, but often it is not enough. Some people “package” services from a home care agency with the time spent at adult day care. In addition, a home care agency can assist with evening and weekend care to reduce the strain on you, and keep your father at home longer. But as you can see, that takes quite a bit of coordination, and still a fair amount of resources, to do properly. Everyone’s situation is different and everyone has a different threshold, so you have to figure out what is appropriate for you and your loved one. It is time to consider a nursing home or assisted living facility if you are feeling overwhelmed and the quality of life at home has fallen. You need to remember that it isn’t fair to either of you if your time with your father is so strained it diminishes your quality of life. If he were to go to an eldercare facility, your time together would likely be decreased, but then your time together could be that much more focused on doing things you like together, and in a lower stress environment. Some assisted living facilities have staff members who are trained and equipped to work with Alzheimer’s residents. But many do not. You must research any long-term care operator’s limitations before making a decision. Some will accept Alzheimer’s residents until they become incontinent or require some other type of skilled care. In that case, you must consider what an extra move might mean to your father’s well being and sense of orientation. This is a decision that you, as primary caregiver, must make. Everyone has different limitations and goals. When you know you have reached your limit, make the most appropriate, effective decision for everyone involved.  Realize you have done your best and that that is good enough. Let go of any guilt, for it can only destroy you.  For more information about Alzheimer`s, click here for our Resource Kit.  
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I’m scouting nursing homes for my mother, who has Alzheimer’s. Can they ever kick her out if she runs out of money? ? | Chicago, Illinois Elder Law Attorney Anthony B. Ferraro

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July 25, 2012

- Alzheimer's Care, Blog, Elder Law Articles, Medicaid and Paying for Nursing Home Care

This is a good question that you need to sort out before making a final decision about specific living arrangements for your mother. Medicaid is for individuals who have little or no means to pay for their own care. Eldercare facilities must be certified by the appropriate government entities to serve Medicaid beneficiaries. Some nursing homes and other eldercare facilities simply are not certified to accept Medicaid funding once a resident runs out of his or her own money. And those facilities that do accept Medicaid could have a long waiting list for the beds designated for that type of care. That is why it is so important to figure out the lay of the land and your options before you initially settle your mother into a facility. Find out the monthly cost of a nursing home that interests you and project how much you think you will ultimately be needed. If you think your mother will outlast her funds, you can ensure you choose a provider that will accept Medicaid, when and if the need arises. Families of individuals with Alzheimer’s usually do not want to move their loved ones if they don’t have to, especially not after they have adjusted to their surroundings. Changing locations can be very stressful for a person with dementia.  To learn more about Medicaid, click here.
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How can I get a family council established at my husband’s nursing home? | Chicago Elder Law Attorney Anthony B. Ferraro

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July 20, 2012

- Alzheimer's Care, Blog, Elder Law Articles

When done right, family councils can be very beneficial. Their goal is to discuss issues with staff members in a constructive, non-threatening setting. They are not supposed to be forums for constant complaining or berating of staff. At these meetings, ideas, concerns and possible solutions are shared. It is also an opportunity for bonding with staff members. If you want to establish a council, speak with the nursing home’s administrator. These councils are common so you might not face much resistance. Establish a place, day and time to meet, as well as a format for how meetings will run and what will be addressed. You’ll also need to determine who will run such meetings, and create a way of informing all residents, family members and staff about them. The meetings can be informal, or quite formal — complete with minutes being taken. It’s up to everyone to decide. The structure isn’t as important as getting information out and distributed. One big function of family councils is to help arrange activities that involve both residents and their families. By this, we’re mainly talking about picnics held at the facility. These can help promote a sense of unity among residents, family members and staff.  For more information, look into our Alzheimer’s Resource Kit.  
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I think my mom’s medication is affecting her negatively. How can I get her nursing home to adjust it? | Chicago, Illinois Elder Law Attorney Anthony B. Ferraro

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July 18, 2012

- Alzheimer's Care, Blog, Elder Law Articles

I recommend documenting what you have seen since your mother started the medication in question. You can also start out by directly calling the physician who prescribed it and asking about your concerns. Your mother could be experiencing a transition period, which might be expected. If you think you are getting resistance from nursing home staff members, you should speak with the facility’s administrator. You may also ask to sit in on the next care-planning meeting for your mother. This is where various members of the nursing home caregiving staff collectively discuss a resident’s health status and plan of care. By rule, you are to be informed of these meetings and allowed to attend them. If you are not satisfied with what you hear, then you have to make a further decision. There is the option of calling your state’s long-term care ombudsman. Ombudsmen have been trained to advocate on behalf of nursing home residents. This person can work as a mediator to help you and your mother’s facility work out any differences. You should feel comfortable enough that she is in a safe environment, with people who care for her around her. If this isn’t the case, you might have to move her to another nursing home. This is a difficult decision to come to because moving is hard, especially on a person with Alzheimer’s. Weigh the pros and cons. But the bottom line has to remain whether you are comfortable with the facility where your mother is living. If you’re constantly worried, then your qualify of life could go down. If all else fails in a situation like this and you are your mom’s power of attorney for healthcare, you can request a change in her medication. Just be sure to have spoken with her physician ahead of time to ensure that this is the best thing for her.  For more information, sign up for the Alzheimer’s Resource Kit here.
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