Friday, May 22, 2015

Dementia: Legal & Financial Considerations

This week our guest blog writer is David Watt, of Laker Legal Solicitors. (Italicized inserts are mine.)

When you or a loved one is diagnosed with dementia it can feel like a frightening situation. The challenges ahead can seem daunting but you're not alone. There is a lot of help out there for you to get the support you need. There are a number of government programs that can assist you in caring for someone with dementia or if you have been diagnosed yourself.

There are a number of legal considerations to take into account with dementia. It is important to plan ahead as soon as possible in order to best adhere to your loved one's wishes. Talking with them about what they want is vital for finding out their wishes for future situations such as designating a person to make decisions on their behalf when they are unable to do so. Doing this early can help prevent difficult behavior in later stages. You will also need to discuss the long-term care wishes and planning for finances and property.(Even when a person can no longer remember having this discussion, their subconscious will, and they will be less resistant to whatever they agreed to earlier.) 

The ability to make rational decisions and understand one's action is referred to as "legal capacity." If a person suffering from dementia has the ability to understand important legal documents then they have legal capacity. Different documents have different requirements for legal capacity. A lawyer will be able to help you determine if your loved one has the legal capacity to sign a document. A doctor can also assist in determining a person’s mental ability.

If there are existing legal documents that were signed before your loved one was diagnosed with dementia they may not remember signing them. It is a good idea to review them with another person to make sure that they are up to date.

When meeting with lawyer, it is helpful to get an attorney that specializes in elder care. Some key points you will want to discuss with your lawyer are: Decision making for the person with dementia, managing the person’s assets and finances, managing a person’s personal care, and long-term care services.

You will need to bring a number of documents to the lawyer to help them give you the most relevant advice. This includes:

• Copies of deeds to real estate
• Tax returns
• Health insurance or benefits booklets
• admission agreements to healthcare facilities
• A detailed list of assets
• Wills, trusts, powers of attorney
• A list of the names and addresses of people involved, family and caregivers.

People 65 or older are usually entitled to Medicare, especially if they are receiving Social Security retirement benefits. If you have a young onset diagnosis of dementia and have been receiving Social Security disability benefits for at least 24 months you are also entitled to Medicare. It provides monetary support with inpatient hospital care, outpatient prescription drugs, some medical items and some doctor's fees. This program also provides you with some home care under certain conditions. This includes rehabilitation therapy and skilled nursing care. It's worth checking up regularly what your Medicare can give you as there may be changes that affect you. In addition to Medicare there is Medigap insurance which supplements Medicare coverage and, as the name suggests, fills in the gaps that Medicare does not cover including paying for coinsurance.

(Medicare plans vary greatly by state. Many insurance companies offer plans based on the Medicare required basics but what they add can be bewilderingly different and so can their cost. What they offer also changes yearly. No Medicare plans cover long term care. Medigap plans can be expensive. Consider consulting a Senior Adviser, or a person specializing in these plans before choosing.)

To qualify for SSDI, Social Security Disability Insurance, a person must meet the criteria for disability out lined by the Social Security Administration. This often means that they need to prove that the person with dementia cannot work, they will remain in the condition for more than a year or that it is ultimately expected to result in death. For those younger than 65 to qualify they will need to meet other criteria. Usually they are fast-tracked to a favourable decision so that the person can start receiving benefits in a shorter amount of time.

(Expect your application to be denied the first time you apply. Using legal guidance so that you get the wording just right will lower the chances of this but still, most people who apply for SSDI must apply more than once before they are accepted.)

Bottom line: Speak to a solicitor or lawyer to ensure that the person living with dementia is given all the assistance they need.

(Yes!!! And I add, so that the you, the caregiver, get all of the legal power you need to care for your loved one.)

Living With Dementia, the Practical, Legal & Financial Considerations. A worthwhile article with  more good information. Laker Legal is based in the UK, but most of their information is applicable in the US as well. (Do check this out!

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Friday, May 15, 2015

ER and Hospital Expectations: Loved One

"There is simply not enough staffing in a hospital to calm, help and comfort a LBD patient. And sometimes they don't know what LBD is or the devastating, stressful effects." Comment by Arlene on 5/5/15. This weeks blog is in response to her very apt statements. How can we, as caregivers, help emergency room and general hospital staff calm, help and comfort our loved ones? Here are some ideas to get you started. Feel free to add comments with your own suggestions or concerns.

Expect it to be cold. Hospitals, especially ERs are cold places.

• Make sure your loved one is dressed warmly and ask for warm blankets if he's still cold.

Expect your loved one to be uncomfortable. Waiting will be more uncomfortable, and possibly painful, than boring for your loved one.
• Bring a pillow (or ask for one) and help him to readjust for more comfort.

• Bring some coconut oil laced with one of the soothing essential oils and give your loved one a hand massage. If the oils aren't allowed, used hospital-provided lotion. It won't be as soothing, but it will still be helpful.

• Use touch, lots of gentle touch. Holding his hand, smoothing his blanket over his shoulders, kissing his forehead all tend to be comforting.

• If your loved one is comfortable enough, he will likely zone out. DO NOT relieve your boredom (and your worry) by fussing over her.

Expect your loved one to be impatient. People who are sick don't do patience well. Add any cognitive involvement, as with LBD or Parkinson's with dementia, and it is even more difficult.

• Bring snacks, or buy them in the hospital (depending on your loved one's diet or hospital orders).
• Use music. Bring an ipod, or mp3 player with calming music.

• Use distractions, depending on your loved one's abilities and interests. A book, a cell phone game, a deck of cards, or even a favorite stuffed toy. I bring Jim's laptop so that when he is feeling up to it, he can play card games and check his email.

• Ask about internet connections. Hospitals usually have free patient wifi. This can be both helpful and entertaining for both of you.

Expect your loved one to be dependent. You are their stability, their connection with a time when they felt healthy. Even so, you still need to take occasional respite periods...going to the cafeteria, etc. Do not give these up!

• Choose times when your loved one is either asleep or otherwise involved (as with trips to x-ray, etc.) for your times away from his side.

• Set a return time--and keep to it if you possibly can.

• Stay connected by cell phones. Just knowing he can call while you are gone will decrease his agitation.

Expect the staff to really care. People don't usually enter the health care profession to make money. They do it because they like helping people. However, hospitals aren't staffed to offer the individual care you provide at home.

• Always treat the staff with respect. They may not know a lot about LBD specifically, but they are still professionals, doing their job to the best of their ability. (More about educating staff in a future blog.)

• Look for things to compliment. Your recognition of staff's hard work, or their caring attentions goes a long way. You know, honey instead of vinegar.

Expect to ask questions. There are usually things you can do for your loved one instead of waiting until a staff person gets around to it, but this varies with the hospital.

• Ask where the hot blankets are. Sometimes they will let you help yourself to these. You can keep your loved one warmer and save the staff many steps.

• If admitted, ask where the nourishments are kept. They will usually allow you to get items for yourself or your loved one from this area. Coffee, tea, ice cream, crackers and the like are usually available.

• Ask how to how to roll the bed up and down, and how to take the brakes off and move it. (The staff may frown on the latter, however.)

Expect to be an advocate. In times of illness and stress, the ability to think and communicate plummets.

• View behaviors as communication: irritation, restlessness, or frowning may be signs of discomfort or pain.

• Try to identify the problem and fix it. This may mean doing something yourself like asking for another blanket or passing information about something like pain on to the staff.

Expect your loved one to still feel "rocky" when you get home. An ER and possibly hospital experience is usually very stress-related. This decreases everyone's ability to function--including the caregivers. Give yourselves some slack! You are both doing the best you can. And don't forget the first caregiver requirement: patience! It is also the last one. Now if I can just remember all of my own good advice....

Soon: Hospital Visits: Being an Educator. That was supposed to be in this blog but it just got too long! However, next week we may have a guest blog on the financial aspects of caregiving.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
http://managingcognitiveissues.com

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Friday, May 8, 2015

ER Expectations: Caregiver

For Jim, another visit to a hospital emergency room (ER), another twist to his disorder, another day of both of us feeling helpless and frightened as his body jerks him around (figuratively, that is). For me, another day of being a caregiver, of putting his needs before my own, and before ours as a couple. For both of us, more lessons to learn. Readers will be glad to hear that Jim is home again, "feeling fine" (i.e., stop asking!) and not planning another ER visit.

When I sat in the ER this time, I began making a list of the things a caregiver and their loved one should expect and things they need when visiting the ER. That list got very long and so I had to cut it in two. This week is mainly about caregiver expectations and needs. Next week will be about helping your loved one have a better ER experience.

Expect to wait. Expect to wait for a bed in the ER. Expect to wait after you ring the bell for service once you are in a room. Expect to wait for tests, and then for the results of those tests. Expect to be bored...waiting is usually boring.
  • Patience is at the top of the list. This can be difficult to manage. You understandably want your loved one who is ill and likely in pain, made comfortable NOW but "now" probably isn't going to happen in a normally crowded ER. If the unit is short staffed, it may take a long time (hours!) for them to get around to you. However, impatience only makes your loved one feel worse, may alienate staff and definitely adds to your own stress.
  • Bring busy work...a book, crocheting, and the like. Also bring money for trips to places like the cafeteria.
  • Ask how long each wait is likely to be. There are two reasons for this.
    1. It is human nature to feel less stressed when we know when something (in this case, the waiting period) will end--and anything that decreases stress is worth doing!
    2. You need to take breaks, but you definitely want to be there when needed. Often the staff can give you a broad idea of how long a wait will be. For instance, they told me that one of Jim's tests would take 45 minutes to an hour. That gave me time to go to the cafeteria and eat a relaxed meal.
  • Take advantage of long periods of waiting to take breaks once your loved one has been admitted to the ER and has a bed, and later if he is admitted to the hospital. (This is called "self care.") Get completely out of the area. Go to the cafeteria. Check out the hospital shop. Hospitals usually have computers available for visitors to use; find one and play a game or check your email.
Expect to need more exercise. Sitting in a waiting room, ER room or hospital room can be hard on a caregiver's often elderly, often arthritic joints. Go for walks, short ones when you need to be close by and longer ones during a longer waiting period.
  • Hospitals hallways are a good place for "mall-walking.
  • If the weather is good, go outside and walk around.
Expect the ER to be cold. There's a good reason for this...cold is good for fighting germs, but being cold will increase stress for both of you.
  • Come dressed in warm clothes and bring a jacket. Don't forget socks if you live in a place like Phoenix where it might be 100 degrees outside.
  • If you are still cold, ask for warmed blankets. These are available for your loved one but staff will be glad to bring you one--or more, too.
Expect to feel stressed. It isn't easy getting a loved one out of the house, into the car and then into the ER. Any hospital visit is reason to worry, and most of us have had enough experience with worrying to be experts at it!
  • Practice deep breathing and other stress reduction techniques. Consciously relax as much as you can.
  • Look for positives--and talk about them when you see them. A nurse who is specially attentive and caring. A doctor who actually knows about your loved one's illness. Another caregiver who shares a few pleasant words with you. Just waiting is stressful and so celebrate each step towards the end of a wait, and towards the end of the entire visit.
  • Choose not to worry. Worry is what we do when we can't find anything constructive to do...and all it does is add stress. Do everything you can--such as taking your loved one into the ER where he can get help--and then consciously let of of the worrying. This may not be easy, but it is as important a self-care step as taking breaks.
Next week, making an ER visit more comfortable for your loved one.

Saturday, May 2, 2015

On Being a Caregiver to a Hospital Patient

Last week I reported that Jim was having surgery. That went fine. Then he was readmitted to the hospital on Tuesday and got out today. The stress from the surgery caused his Crohns to flare up. He's fine now...has more energy than before this surgery thing started.

We learned some lessons. I hope there won't be a next time, but if there is, I hope we can remember them.

Remember that each person is a whole body, with each issue impacting on the other. With chronic issues such as Crohns--or PD or LBD--plan ahead to limit these clashes. For instance, if Jim had increased his Crohns drugs prior to surgery, he might not have had to experience a flare-up of Crohns. For someone with a Lewy body disorder, a similar preventative measure might mean adding a small dose anti-anxiety drug a few days prior to a known period of stress, such as a move into residential care or a visit from distant relatives (see 4-3-15 blog).

When a crisis occurs, don't let the urgency blind you to the power you still have to change the situation. When Jim started hurting, we forgot all about the fact that the first thing they always do for a Crohns flare-up is "nothing"...nothing to eat or drink, that is. All we could think of was getting him to the hospital, where he'd have professional help. And so Jim sat in the ER for eight hours waiting to be seen, another two lying in an ER bed waiting to be admitted to the hospital and then a whole day afterwards with nothing to eat or drink. That was exactly what he needed but, "I could have done that at home and been a lot more comfortable," he said later. Have you had experiences like this  as a Lewy body disorder caregiver. Times when you let the crisis take over and it made things worse instead of better?

Be willing to speak up, ask questions and demand answers. Most of you have been in situations where your loved one was treated for something other than Lewy symptoms, and perhaps given drugs that were either not helpful or even harmful. Jim was admitted to the hospital with a diagnosis of "infection," instead of Crohns. Well, they look a lot alike on an x-ray and, "In the ER, the tests tell the story," a nurse told us. But patient history means a lot too, and we caregivers are the ones with that in spades! Naturally, I was making myself heard on the subject. I didn't like to see Jim getting antibiotics that he probably didn't need! Finally, after the blood tests came back negative for infection, they stopped the antibiotics. I don't know if they would have then if I hadn't made a fuss--they might have left it, "just in case." When Jim was finally given something for Crohns, he improved immediately.

Please understand that we greatly appreciate the generally wonderful care that Jim had during his stay. The staff were all very kind and helpful. I simply wanted to pass on something that we as caregivers seem to have to learn over and over...we actually know more than we think we do--but we let the fear that a crisis generates cover that up and we end up looking for help--often in places that know less than we do about our loved ones and their specific issues!

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Thursday, April 23, 2015

Updates and the Value of Routines

This is a blog about a lot of things that have been happening in our lives lately.

First, here's the promised progress report on Jim and his surgery. The surgery went fine. He is home and doing well. He sends out thanks for all the inquiries.

Then we need to recognize a couple of families that have made impressions on our lives. The first is a couple we met last summer in Washington State. Dave and Bet, and their way of handling her LBD, were the subjects of all three of our August, 2014, blogs. We just received word that after 5 1/2 years, Bet has ended her LBD journey. We send her family many warm wishes.

Joy Baker is the co-facilitator of our local LBD Caregiver Support Group. With her caring ways and ready wit (a requirement for caregivers, she insists), she has become a good friend, not only to us, but to many in that group. Her dear husband, Bob, also ended his LBD journey recently. We also send many warm wishes to Joy and her family.

Finally, another family has also been in thoughts. John and Laura have been together for 40 years. Theirs has been a close marriage on the most part and they never really needed anyone but each other, especially after the children were grown. Yes, they were social, but usually they socialized with other couples. They had hobbies, even different hobbies, but still, they did them together. But now, John has LBD and Laura is his caregiver. He's still physically active--he can walk for miles and sometimes does, when he escapes from their gated community. Recently the police brought him back from such an adventure. Laura has begun to feel trapped. She can't leave him alone anymore and he won't stay with anyone else. They've just never had that kind of relationship. What to do? That's her dilemma right now.

It makes us realize how important preparation is. Developing routines while the capability of thinking is still present is an important step that many caregivers miss. Such a routine would probably have helped John accept Laura's leaving him with someone else for a few hours. For instance, they could have instituted a weekly "guy's day" where some of John's s male friends would come to play cards or visit, while Laura left for a couple of hours. As most couples would have done, they didn't even consider this while John was still able to see cause and effect. He was fine alone; he didn't need a "babysitter" while Laura ran errands. After all, who wants to pay or ask friends/relatives for unnecessary help. But then, when the need came--and it usually does for our loved ones, it was too late to develop a routine that John could accept.

The moral of this story is this: If you are just starting out on this journey, do remember to plan for the future while you are dealing with the present. This includes more than getting the right legal work done, as important as that is. It also includes setting up some routines that will pay for themselves time and time again even if they seem unnecessary at the time you start them.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

Friday, April 17, 2015

Surgery Went Well

No blog today. Jim had surgery and so we spent the day at the hospital. It went very well. He's now awake, alert and doing everything they think he should be doing. He is spending the night in ICU, as a precaution, not because of a problem, and should be able to go home tomorrow. I spent the day in various waiting rooms and in the hospital cafeteria. I'm bushed. Waiting is tiring work! Thanks to my friend Joy, it was an easier job than it would have been. We all need support at times like this and today, she was mine.

More next week!

Friday, April 10, 2015

DLB and PDD: How Are They Different?

Today the blog is about the ways that the two types of LBD—dementia with Lewy bodies (DLB) and Parkinson’s disease with dementia (PDD)—are different. We often talk about how they are the same, and truly, those ways are the most important. But there are a few differences too.

1. Diagnostic criteria. Because DLB was defined by dementia specialists and PDD by movement specialists, they have different criteria. The LBDA offers a chart which shows  similarities and differences between the two criteria. They are more similar than different, but do reflect the different mind sets of their originators. For example, with DLB, "dementia" is required for a diagnosis,  but what it means is not really spelled out. With PDD, dementia is broken down into four specific core issues. (Chart)

In most cases, how a person with LBD is diagnosed will not be an issue; treatment is the same. However, with PDD, as the dementia becomes more prominent, the drugs used for PD may make the dementia worse and may need to be adjusted.

2. Mobility. This is the major difference. In the LBDA chart, Parkinsonism is required for a PDD diagnosis (in the form of a PD diagnosis, usually years prior to dementia). In DLB, it is one of three core issues, equal with visual hallucinations and fluctuating cognition. In our experience, a person diagnosed with DLB will usually movement issues eventually, but they are seldom as severe as they are with PDD. For example, Jim's first wife, Annie, had DLB. She developed the typically weakened facial muscles, but she was ambulatory until very late in her journey. In contrast, our friend, Bill, who had PDD, spent his last years in a wheelchair.

3. Alzheimer’s (AD). Another difference between DLB and PDD is how they pair with Alzheimer's. You probably already know that few dementias are “pure.” That is, a person usually has some combination of two or more types of dementia, not just one. For some reason, the person with DLB is much more likely to have AD (80% of the time) than the person with PDD (less than 20% of the time). They are equally likely to have vascular dementia (VaD) and equally likely NOT to have Frontotemporal dementia (FTD). (Reference)

3. Wandering. The likelihood of AD, where wandering is a common symptom, combines with DLB’s better mobility to make wandering much more likely for people like Annie. This must be considered during residential placement. A person with classic LBD may be placed in an assisted living facility because they don’t need the constant containment that a person with AD needs. (But the additional activity, which can increase stress, may still make this a poor choice!)

As mentioned earlier, the similarities between DLB and PDD are greater, both in numbers and in importance. But concerning differences, what have your experiences been? Feel free to comment!

For more information about Lewy body disorders read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s &  Lewy Body Dementia