Tag Archives: Alzheimer’s support groups in Illinois

Alzheimer’s Caregivers’ Advice | Illinois Estate Planning & Eldercare Attorney-CPA Anthony B. Ferraro

Assuming the role of a caregiver for a loved one with Alzheimer’s is very hard. It can be a struggle, both physically and mentally.  As an Alzheimer’s caregiver, you are going to be approaching challenges that are both new and frightening.

Alzheimer’s is a complex disease and it can affect your loved one in many different ways.  Someone with Alzheimer’s may struggle doing simple tasks such as getting dressed or eating.  The typical Alzheimer’s patient will also face confusion and, therefore, you will receive repetitive questions and see odd behavior.

In a situation like this, it is normal to feel trapped.  However, I am here to assure you that there are ways to make you and your loved one’s journey through Alzheimer’s easier.

First off, I suggest that you abferrarolaw.com/senior-resource-kits/alzheimers-resource-kit/.  There you will find many tools on how to cope through the Alzheimer’s journey, including the recording called, “Caring for and Communicating with the Alzheimer’s Patient.”

Other helpful information covered on the above website includes paying for the cost of Alzheimer’s care, discovering hidden VA benefits, and how to approach crucial legal documents.

-Anthony B. Ferraro

Coping with Alzheimer’s | Chicago Estate Planning & Eldercare Attorney-CPA Anthony B. Ferraro

Alzheimer’s has been termed “The Long Goodbye” due to its devastating effects that last for many years.  When our loved ones have Alzheimer’s, it doesn’t only affects them, it affects us.

However, there is still hope: hope in learning how to cope with Alzheimer’s.  As of today, there is no official cure for the disease, but by taking the simple steps many Alzheimer’s caregivers are using to cope, we can regain some peace of mind.

By visiting the website below, you will gain access to the Indispensable Alzheimer’s Resource Kit.  This is a helpful tool that will assist you in providing stress-free care for both you and your loved one, as well as ways to pay for Alzheimer’s care without going broke.

abferrarolaw.com/senior-resource-kits/alzheimers-resource-kit/

I also encourage you to visit www.AlzheimersHope.com, which is an internet community that will give you the opportunity to connect with Alzheimer’s caregivers from around the world.

You are not alone in your journey through Alzheimer’s, and the above websites will assure you that there are many others experiencing the same thing as you.

If you have any other questions about Alzheimer’s or any other legal-related issues, please call my office at (847) 292-1220.

-Anthony B. Ferraro

Attorney-CPA

Would I benefit from a support group for Alzheimer patient family members? | Chicago Elder Law Attorney Anthony B. Ferraro

First off, a support group is not necessarily for everyone. BUT for most Alzheimer’s family it IS a godsend.

There are many types of groups you can join. You need to find one that makes you feel comfortable. They typically have a special theme or focus, such as for spouses, adult children, caregiving aspects, etc. You should find a group that meets at least twice a month to get the best benefit.

You also might consider a group that generally discusses caregiving issues. Most issues with caregiving are similar, no matter what the disease. Some issues confronted might be frustration, guilt, anger, fatigue, finances, physical challenges such as incontinence and so on.

The goal of a support group is to give you a confidential, secure way of expressing your feelings and concerns. This can lessen pressure or anxieties you might be feeling. The caregiving you’re doing is a difficult job, one that nobody really asks for. You don’t volunteer for it but are volunteered for it, so to speak.

Sharing with others who identify with your situation can be affirming, comforting and validating. You also can talk to the group to find solutions to problems you might be having. Odds are that someone else in the group already has experienced a similar problem and can relate to it, and probably supply a practical solution.

The individual with Alzheimer’s also can benefit from being part of a support group. He or she needs to talk about feelings and experiences with the disease. Joining a support group can help lessen frustration and anger. Members of such groups talk openly about having the disease, what to expect and how to plan for it. Therefore, the participant must first be aware of his or her diagnosis to take part.

Support groups for patients themselves is a fairly new concept so you might not find them as readily available as those for family members. So far they have typically been more common in larger metropolitan areas.

Keep in mind that if you live in an area that does not have a support group, there are groups established online. One example is The Alzheimer List, which is sponsored by the Alzheimer’s Research Center in St. Louis and can be found here.

 

 

 

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

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.

How can I get a family council established at my husband’s nursing home? | Chicago Elder Law Attorney Anthony B. Ferraro

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.

 

How do I agree to get my loved one to agree to attend an adult day center?

Alzheimer’s patients are often reluctant to leave familiar surroundings — and when you think about it, who isn’t? So don’t be surprised if this happens. An adult day center offers respite for the caregiver, not to mention activities and stimulation for the patient — and in a safe environment.

Using a participant-friendly name for the center could make your loved one feel more comfortable. You might call it “the club,” for example. Others have had success calling it “school,” “work” or “volunteering.” You’ll know what will work best with your loved one, and whether certain techniques you have used in the past will be useful again. Perhaps saying, “This is your time to spend with your friends” or, “Please do this for me” will work well.

Some caregivers advocate simply getting into the car and driving directly to the center. Answer questions along the way with positive answers such as, “It’s your day to go to the club” or, “We’re going to a fun place.” Often, someone with Alzheimer’s won’t remember being there before, but then also have some recognition that it’s a “safe” place with friendly people. If you still encounter resistance upon arrival, the center’s staff will be experienced in helping get your loved one into the center.

Make your good-bye short and then leave! If the staff is properly trained, they should know how to take it from there, making your loved one feel welcome and loved.

Get to know the staff well so both you and they feel comfortable. They’ll probably want to ask you questions in order to give your loved one the best care they can. You may call during the day to check on how your loved one is doing. Often, in fact, the staff encourages this.

One key to success is to develop a consistent schedule. There will be various reasons for your loved one to miss a day, but the benefits to keeping a consistent routine far outweigh the urge to just drop in whenever you think “it’s about time for another visit.” Both you and your loved one (and, to some degree, the center’s staff) will benefit from consistent attendance. Participants often adjust well once they get into a routine and are familiar with it. Besides, this is something that your loved one might very well look forward to. Sharing time with people with like interests and/or backgrounds is usually a good way to spend time.

Another way to overcome any complaints or objections from your loved one is to have someone who is NOT the primary caregiver take him or her to the center. This could be a friend, neighbor, someone from church, a family member or even a transportation service. The caregiver then will not be a “bad guy” while the person who will deliver your loved one will become a “hero,” especially at pick-up time (if the adjustment to the center still hasn’t gone smoothly).

When your loved one arrives home, always try to put a positive spin on what happened during the day. Talk about any activity or menu items from the center. Ask how he or she felt about the experience. Even if there’s not much memory of what happened, stimulate conversation and reinforce good feelings. Stay focused on the positives and reassure your loved one that he or she will always be able to come home. Reassurance is crucial for dealing with feelings of insecurity.

Sometimes caregivers hear that their loved one had a “bad day” at the center — from the loved one, but not the staff. The person might say that he or she never wants to go back. This is where you have to take control, with an adult version of “tough love.” If you feel the center is a good thing for your loved one, you should continue the routine of getting the person there. It takes positive reinforcement and persistence to find adjustments and make a routine work. Remember that because your loved one might be attending only part-time, it might take longer to adjust than if he or she were there for longer periods of time.

If the center feels good to you, it is probably a good place. If your loved one complains but your gut is telling you something different, talk with the director of the center or a social worker and discuss the situation. If you still don’t feel comfortable after that, find another center! You are usually not locked in to many terms and you are able to come and go at a center without penalty.

Another thing to consider is that some individuals with Alzheimer’s might become over stimulated if they are around a lot of other people, regardless of the environment. You must watch this carefully, too. In some instances, staying home with company or an attendant might be better than placing your loved one in a situation where he or she might be constantly over stimulated, with too many people around.

I’m the primary caregiver for someone with Alzheimer’s … How can I get a break?

Alzheimer’s is a family disease, so that means it affects everyone. Primary caregivers in particular experience a lot of stress. For this, the first steps are acknowledging it and getting help.

 

Take advantage of the generosity of any family members or friends who are willing to help out. If you’re one of the many family-member caregivers who don’t have this type of assistance available, look to any of the increasing home- and community-based services that can help afford you a break.

 

Look for these services nearby:

 

  • Adult say services — Clients actually go to these centers for socialization, stimulation and supervision while primary caregivers get a break. Not all centers have experience caring for Alzheimer’s patients so check around.
  • Overnight respite — Many nursing homes and assisted living facilities offer short-term stays with the express purpose of giving caregivers a break. Most do it on a space-available basis, though, so you need to plan and have a calling list ready.
  • Hired caregivers — You can hire a live-in caregiver. Networking can be helpful here. Ask around church or other local groups, such as the Alzheimer’s Association or the Area Agency on Aging, for experienced caregivers who typically work on an independent basis. If no agency is going to be responsible for these caregivers, you must treat this process with the diligence of hiring an employee (which is, in fact, what you’d be doing). Check references, do a background check, get to know the prospective caregiver, see how she or he interacts with your loved one, and don’t be afraid to ask the candidate back to check interaction a second time. You should ask your loved one for input about the candidate. Sometimes people with dementia have keen senses of perception and intuition.
  • Private duty home care — This is for single services or groupings of them on a spot basis. Many agencies offer workers who provide these types of services, which can include bathing, taking to appointments, shopping, sitting, meal preparation and other day-to-day needs.

 

But again, it can’t be emphasized enough: If you have family members, friends or others you trust who are willing and able to help, use them.

How do I handle things when the rest of my family isn’t helping take care of loved one with Alzheimer’s?

In brief, if you’ve tried to involve other family members with the care of your loved one and they haven’t responded, you have to let it go. You cannot control how another person responds. Also, you don’t need the burden of worrying about others’ actions added to your significant concerns.

Many times, family members can be intimidated by Alzheimer’s disease. Others go through denial. Regardless, the fact is they have chosen to be uninvolved and that is their problem. You’ve chosen to deal with it and help out. You have to move on and take care of yourself.

When solo caregiving gets to you, seek help. Don’t be afraid to look for support groups, counseling or non-family sources of help even before you think or feel you need it. But when you do get to the totally overwhelmed point, be sure to confide in a trusted friend or look for an area support group, or both. That’s where you can express your feelings. In a group, there is almost always someone who can relate to your situation.

Sometimes, you can “adopt” someone new to become a part of your family — perhaps a friend, church member, or acquaintance — and receive help that way.

Everyone deals with stressful situations differently. Try to keep your family in the loop as much as possible. Give or send them pertinent information pertaining to Alzheimer’s so they have the means to be knowledgeable and then you have to … let it go. They are adults, capable of making decisions for themselves and living with them.

I’m a member of the ‘sandwich generation’ and need help now that Alzheimer’s has entered the picture

“Sandwich generation” refers to individuals or families that find themselves raising not only their children but also parents or other elderly relatives, often while also holding a job. This obviously is a complicated scenario and can be very stressful for everyone involved.

The oldest might become harsh or impatient with the younger members of the household, and vice versa. The younger ones might feel as if their grandparents are encroaching on “their” space.

Trying to be a primary caregiver in this environment can be an especially complex minefield, and it is highly recommended to join a support group to obtain some coping strategies. In addition to this, you might want to look up a support group for children of people with Alzheimer’s.

The type of “blended” family described above can work, despite any battles that might break out. One place to find some assistance is the American Health Assistance Foundation, which has a number of very helpful publications.

The national Alzheimer’s Association also has many resources. Its contact center is available 24 hours per day at (800) 272-3900.

Can I seriously consider being blessed to be a caregiver?

As devastating as Alzheimer’s is, you can look at it as a burden or a blessing. We cannot control so much of our life — like what people think of us or how they run their lives. Or whether we get a disease.

But what we CAN control is our own reactions. While it might be very difficult, as a caregiver you must arrive at a place of acceptance. But you do not get there without grieving first.

Grieving is undeniably a personal journey. Some people progress at a fast pace while others take longer periods at various stages. Some stages they might never experience.

Grieving can consist of many emotions:

Shock — You can’t think, speak or react after hearing the diagnosis

Emotional outpouring — Yell, cry, even throw things at this stage

Depression — Loneliness and a feeling of isolation set in

Physical signs of distress — You might feel ill or extremely tired

Anxiety — Worries about what’s going to happen in the future grip you

Anger, hostility — You’re mad at the afflicted person, your family, doctors, even God. You then can feel guilty, especially for the anger you have directed at God

Guilt — Your thoughts and feelings make you feel guilty, or you feel that you’re not doing enough as a caregiver

Not keeping up with normal activities — You worry about how others will react or treat your loved one

Healing of memories — You come to the slow realization that healing memories are often painful memories. This is the time to come to grips with what is happening and realize that life has to change if it’s going to continue. Feed off the good memories to keep you going.

Acceptance — You start to accept you are in a new chapter of life. If you can accept that, you can get on with your life, and with much less stress.

Realize that you will continue to grieve due to the ongoing changes with Alzheimer’s disease. Even when you might get to the “acceptance” stage, you won’t be at the end of the line — you might cycle through the stages again, or through just a few. This is normal. It will not mean you’re regressing or going backwards. Afford yourself a break. Let yourself feel.

The blessings start to become apparent once you hit the “acceptance” stage. It’s said Alzheimer’s disease can be a person’s second chance in life. Inhibitions disappear. Patients become blatantly truthful, and often funny in the process.

You did not ask for your loved one to have dementia, and you didn’t ask to care for her or him. This situation has been “given” to you. That means it is a gift to you. And you discover that your loved one also is a gift to you.

For more information, please click here to download our FREE “Indispensable Alzheimer’s Kit.”