Looking for An Assisted Living Place?

Pacific Gardens, Santa Clara

The time may come when you need to seek out Assisted Living apartments for your loved one. It is an exhaustive search, but it can also be very rewarding. While my parents weren't in their apartment for more than a couple of years, the times there were some of their richest and most rewarding.

I started my search with a form I created, listing all the questions I wanted to have answered (See Caregiver Info at right). Then, I did an online search to get all available local facilities. Since my time was limited while still working, I made appointments at the most promising places on weekends. I tried not to schedule more than two appointments a week so I wouldn't get burnt out or mix up the places.

I did not take my parents with me to the appointments as they tired easily and there was no reason for them to be at the initial meetings. I arrived for the appointments on time and filled out as much of my form as I could while in the waiting area. I took a photo of the outside of the building.

As I got tours of the places, I wrote down my observations and filled out the rest of the form by asking questions of the host. At home I printed off the photo and stapled it to the form to prompt my memory when narrowing down the selections.

Then, I made lunch appointments for the most promising places, to include my parents (and other siblings). That way we could taste the food and interact with the other residents. Meal times bring out the best, and worst, in residents at the facilities, so it's a good time to observe. I was careful not to schedule more than two lunch dates in a week, so as not to overwhelm my parents.

I made notations on the form after eating at each place as well. When my parents and I got back together, we discussed each place and noted its pros and cons. The notes and observations (as well as the photo) helped jog memories for my parents. It made the task of deciding much easier.

Westmont, Santa Clara

One we decided which was the best fit for them, I called and started the ball in motion. We were fortunate that there were a couple of apartments available, which isn't always the case. Don't be surprised if you need to be put on a waiting list; a good reason to start this process sooner than you think you need to.

Once they were moved, it took several months for my parents to get adjusted (particularly my mother).But once she started getting plugged into the activities, she warmed up to the other residents and enjoyed her time there.

For my mom, it was more important the place be small and intimate. Others might find a larger, "chain" facility more appealing. Whatever is needed, you've got to start with a few simple questions. That will help you narrow down the choices and hopefully, help you find a place that will become home for your loved ones for a very long time.

Respite Workers

I've emphasized multiple times how important it is for caregivers to get a break from their duties. You're always more effective when you are rested. And let's face it, your loved one could probably use a break from you as much as you need one from them!

So, once you've decided to get away, how can you know your loved one is getting the care they need while you're gone? One of my fellow caregivers has a fantastic idea that I'm passing on to you!

Start with two things: a binder (1" or so should do it), and a journal of some sort (maybe an essay book like the college kids use for testing). For the journal, whatever you like to write in works, however I would encourage you to get something with lines pre-printed. If you're a bit OCD like me, you'll want to get a binder and journal that match. Or, perhaps your loved one will want to help you decorate the journal; those with dementia usually like doing projects!

In the binder, put everything the respite worker will need, to tend to your loved one. For instance, I have an Emergency Information Sheet and Liability Waiver (see Caregiver Info at right), a layout of the daily routine, In-depth medication list with side effects and expectations, directions for Heimlich Maneuver and  CPR, Bedtime routine, loved one's likes and dislikes, what agitates or soothes your loved one, bathing and toileting helps and schedules, etc. You can put dividers in to make things easier to access, but it isn't necessary unless you've got a great deal of information.

A fold-back binder

The nice thing about the binder is the caregiver can add things as new issues come up, or take away things when changes occur. That will insure instruction is always up-to-date for the respite worker. And if you get one of those cool binders where the bottom folds back it can stand up on the counter so the respite worker can get a good look while working.

A good-sized journal, easy too write in

The journal is for the respite worker to write anything that goes on during the day. For instance, if the loved one had to be on oxygen for 1/2 an hour during the day that should be recorded in the journal, noting time, date and duration. If the caregiver starts keeping this journal now it will be easier for the respite worker to see what the routine has been and whether or not the loved one has veered off the routine. When the caregiver returns from the break (whether it's a couple hours or a couple of days) they will know exactly what took place in their absence.

This system is a winner from all viewpoints! The loved one can be assured they will get consistent care, the respite worker will know exactly what is expected, and the caregiver will be able to rest completely while they're away!

My binder is packed full and I'm always adding and subtraction medication information and routine info. It's very helpful when it's complete!

Durable Power of Attorney

Durable Power of Attorney or POA, should not be confused with Medical Power of Attorney or Medical Directive Attorney. A POA is a written authorization to represent or act on another's behalf in private affairs, business, or some other legal matter, sometimes against the wishes of the other. In this case, the caregiver is the “other” or POA, and the loved one is the one who will authorize the caregiver.

The best time for your loved one to authorize their POA is before they need it. While your loved one is still lucid and able to make the decision to elect you as POA, it is the time to do the paperwork!

If your loved one has a lawyer (preferably the one that did their Trust or Will), contact them to set up an appointment for drafting a POA. Each lawyer or attorney will have their own fees associated with this procedure, but it is worth it. If you or your loved one haven’t had a Will drafted, or your estate is not yet in a Trust, please consider it. Estates will be tied up in probate for a minimum of 2 years in California, and often even longer. Not only that, but the state will make arbitrary decisions regarding your loved one’s money if direction isn’t already provided in a Trust.

If your loved one doesn’t have a private attorney or you’re only interested in having a POA drafted, the easiest way I’ve found to provide one is through www.LegalZoom.com. Now, there is one little yellow flag with this online assistance. Depending on how the Trust is worded, or the Will stated, some banks might take issue with the LegalZoom document. Always check with your bank’s legal department before you order the papers from LegalZoom. Chase Bank, in particular, tends to err on the side of caution when it comes to POAs (which of course is a good thing for your loved one, but a bit inconvenient for you). If your bank requires a statement on letterhead from the attorney who drafted the POA document, LegalZoom will not provide it, as they are not an attorney’s office. However, their documents are trustworthy, accurate, and legal. The wording of the Trust will make the difference in whether whether or not your loved on'es bank accepts the POA as drafted. By checking ahead of time, you’ll know what is needed up front and save yourself a lot of time and energy.

LegalZoom documents can be ordered online quickly and inexpensively. Once they arrive all you need to do is have a Notary witness yours and your loved one’s signatures. If your loved one cannot write, fear not! All that is needed is a mark. Once the Notary signs off, you can make copies of the document and send them to all banks, creditors, and financial institutions so your loved one no longer has to be present to communicate with these places.

Even with a POA in place, you will always want to check with your loved about their wishes in their business or private affairs. You are their advocate and should always be sure you are carrying out their desires the way they would want. Stay in communication with them as well, letting them know what is going on and what decisions you’ve made on their behalf.

The Hieimlich Maneuver

Lifting the Correct Way

As my husband's disease progresses, I am adding more caregiving  tasks to my repertoire. Even though I am a large person, I have trouble lifting and moving my husband who is over 6 feet and 200 pounds. I have the added drawback of numbness in my right side due to a stroke 2 years ago. It's actually quite comical to see the two of us trying to move ourselves through the house!

Today I'm posting some lifting guides, with the caveat that you should always ask your doctor if you are able to do these things before proceeding. You don't want to be lifting your loved one and both of you end up on the floor. It might be a fun romp if your loved one is your spouse, but I don't recommend it--there are other ways to enjoy intimacy!

Adapted from American Medical Association Guide to Home Caregiving, by Angela Perry M.D., Copyright 2001.

(Published by John Wiley and Sons, Inc.) With additional editing by Lauri Dilbeck

I WANT MY LIFE BACK!

As a caregiver you have probably heard yourself say, or at least have thought at one time or another, “I want my life back!” That’s a very human feeling to express, but the truth is, no one takes our lives away. We give them over by putting ourselves at the bottom of the to-do list.

 

 

Caregiving means we open ourselves up to pain and suffering, as well as the joys and victories of helping our loved ones through difficult times. But often these circumstances we’ve chosen cause us fatigue, guilt, anxiety stress, frustration, depression, isolation, anger and resentment.

 

It’s amazing how few caregivers have learned to balance their own needs with the needs of their loved one. In taking on this role, most of us have failed to understand the importance of personal attention and in turn our own health.  We don’t dedicate the same amount of energy to our own well-being as we do to that of our loved one. And that cannot be because we are less important! We are just as important and on the scale of care, we are more important because we are caring for two—ourselves AND our loved one. If we become ill or exhausted, who will care for our loved one?

 

Putting ourselves last is not a conscious act, but it is common and it is very dangerous! It is not true that in serving others we cannot serve ourselves as well. It is possible to do both and it’s possible to do both well!

 

It is not only about our physical well-being, but also, and foremost, our spiritual health. When we do not pay attention to our entire being—our body, mind and soul—we set ourselves up for failure in the form of exhaustion and other health problems. When we live our lives only for others, we give our lives away.

 

 

Caregivers are swayed by Western Culture to think that asking for help is a sign of weakness. The fear of admitting that we are not supermen and superwomen, creates such a pressure on us that we are convinced that we cannot measure up if we admit we cannot do it ourselves. We have been cautioned over and over again that focusing on ourselves or putting ourselves first is wrong. So, in the end, we concentrate on doing for our loved one or others and leave ourselves out of the mix entirely. This is the perfect invitation for disease and depression.

 

 

Self-neglect sets us up to take on the needs of others, willingly, but when the exhilaration fades, we find we don’t have sufficient inner resources to feel renewed each day. Our jobs as caregivers begin to take over and we lose a little more of ourselves every day, even when we have the best of intentions.

 

The work of a caregiver is not only about caring for our loved one, but it is about caring for ourselves so that we can be the best at caring for our loved ones. We cannot love another unless we love ourselves first, and loving and caring for yourself is a way to show love to the one you care for. Mother Teresa was an amazing caregiver yet she found time to take rest when she needed it.

 

Because we make sure our needs are met does not mean we are selfish. We need to remain healthy (physically, emotionally, and spiritually) in order to be adequate at our caregiving. We have been taught how to go out and give, but we’ve forgotten how to give to ourselves. Service doesn’t mean we must give our lives away, but rather that we connect in a relationship where we feel value and fulfillment.

 

 

We must not miss the opportunities to foster health and well-being in ourselves. We must be in touch with our grief; our depression and exhaustion so that we can spill it out and unburden ourselves of it. Then, we can become healthy and start to look inward to heal and to begin to think of ourselves as valuable and important to our loved ones and ourselves. We cannot serve or bring forth our gifts if we don’t have the energy to do it.


There is a valid reason the airlines have you put on your oxygen mask before you help someone else. If you are not able to breathe properly, then you certainly won't be able to assist another person. We've got to put our health at the top of the list so we can be strong enough to help our loved one.

 

 

As caregivers we carry the suffering and pain of those we care for. All of this is because we are energetic, empathetic and physical beings. We can still care well without taking on the troubles of the world. Detachment is the ability to care deeply from an objective place.

 

Caregiving, like healing, is mutual. It depends on a circle of connection that renders both giver and receiver more whole. One of the treasures caregivers bestow is the ability to be present with your loved one who is suffering and to validate his or her self-worth. This is also healing work—to witness another’s emotional wounds without judgment. As we acknowledge another’s pain, we are allowed to let go of our own. So it is important to give to ourselves to be the best caregivers we can be.
    

Adapted from Beth Witrogen McLeod’s Self-Care: The Path to Wholeness 2006

with additional input and editing by Lauri Dilbeck 2014

Intimacy with Your Patient-Spouse

Many of us are caregivers to our spouses, which often entails switching our hats back and forth between “nurse” and “spouse”. This is easier for some than for others. Men who care for their wives, and women who care for their husbands, have very different challenges.

I realize not everyone will fall into these categories perfectly, but for the sake of argument I’ll use well-known generalizations for each gender.

Men can usually compartmentalize their lives. In other words, it is not uncommon for a man who nurses his wife all day, to still be turned on by her and ready for intimacy in the evening. For that matter, he may even have trouble curbing his physical attraction while giving her a bath or lifting her from bed. He is able to put his caregiving into a compartment and leave it there while he allows his intimacy compartment to come to the forefront and express his physical love for her without a problem.

Women, on the other hand, tend to connect everything they do. Every responsibility, whether negative or positive, becomes a part of them. Their duties, hobbies, challenges, and other home concerns, are lumped together and not easily separated from one another. So, a woman who cares for her husband all day will often find it difficult to separate her nursing duties from her intimate love for her husband. It might be far more difficult for her to make love to her husband after a long day of nursing him as a patient. In addition, as women age, they experience a physiological change--a lack of interest in sex--so a tiring day of nursing duties can remove the idea of intimacy from her entirely.

Medication can take its toll on intimacy as well. Many of the medications for neurological disorders, cancer, and age, can create impotence or fatigue, both of which become challenges for the sexually active. The male patient may have the desire to be intimate, but because of his medication, his body is unwilling to fulfill that obligation. This can be extremely frustrating, not to mention tiring for both partners.

So what can we do about these things? Medication seems an impossible obstacle to mount (pardon the pun). The biggest thing you can do is to recognize your situation and identify what is creating the intimacy issue. If medication is the problem, ask your doctor whether an ED will assist. I realize adding another medication is usually not ideal, but your doctor can help you with the best remedy for your situation. You may find that the ways you used to be intimate just aren’t realistic any longer. In that case, find new ways to enjoy your partner.

Surprise your spouse with opportunities to be “frisky”. Sometimes your initiation can create the spontaneity and follow-through medication has taken away. Keep your frustration to a minimum. Remember, your patient-spouse is just as frustrated as you are, probably more so.

It’s important to know where your spouse is coming from. Keep the lines of communication open; ask your spouse how they feel about intimacy (things have most likely changed with this new caregiving arrangement). Share with your spouse how you’re feeling. Respect your spouse. Whether that means honoring the lack of desire, stopping after a period of time when things aren’t going well,  or the reverse; accommodating happily, even when the desire isn’t there. You’re a team. You’re in this thing together.

The most important thing to remember is that you're not alone in your situation. Yes, it’s a little unusual, but it isn’t completely foreign. Talk to your doctor, a professional, or a trusted friend who can give good counsel. And, DON’T give up! We were created for intimacy and touch is very important to the healing process. Try new things; you may just find the thing that works best for you is something you've never done before!