Are You Having Any Fun?

smile

I remember, during the last years of my husbands life, having a lump in my throat when I would think about what it had been like to have a little fun, in the old days. I couldn’t tell anyone I was starving for a life. That would really have brought on the tears, and what good would that have done? I was in it to do the best job anybody could possibly do for someone they loved and this was part of it. Suck it up.

The thought of going to a movie and being a little carefree, maybe having some dinner with a friend seemed so far from possible that I really didn’t think of it. Most of my family wasn’t close by and I needed to be home in the evenings, there was a lot to be done at that hour. What I did do was meet a friend for coffee for an hour, maybe once a month, on a Monday or Wednesday morning when my help was there from 8:30 to 11:30 AM. I could run to the grocery store, bank or drug store and wrap that around coffee. I really enjoyed those mornings out. My friends had no idea how much that time meant to me. On Sundays, when our grandson was with him from noon to 5 PM I would run errands, shop and eat a meal out (what a treat). Most friends aren’t available on Sunday. They have families of their own to be with so I was alone; much better than nothing, believe me. Everyone should have a grandson like ours.

When I ask Caregivers what they would consider really fun right now, it’s amazing how simple it would be to bring them great pleasure. People tend to assume they can’t arrange things or they aren’t available. Not every caregiver is off limits for social activity all the time. Families could get creative and take turns seeing that a Caregiver has some fun and really be doing something great.

What is fun? For me, fun is when you share food and conversation with other people. I remember a couple of neighbors on my street having jewelry or tupperware parties during my “confinement”. I was able to leave the house for twenty minutes at a time then, so I or someone else checked on my husband periodically while he was listening to TV (he was blind), and I could drink my coffee and chat. People can be wonderful if they just know what they can do. Caregivers tell me that if a friend would come and visit or invite them over for a glass of wine or a beer and conversation with other adults, that would be great. To go to a movie or a play would be a huge treat. Two family members or friends might arrange the care sitting and night out. If you get a few friends together and go to the Caregiver’s place for coffee, that would be an easy diversion. How about a poker night at the Caregiver’s place? Suggest it or something similar?!

When my husband was still able to go out in a wheel chair, our next door neighbor, a truly kind man, would take him and two other elderly men from the neighborhood out to lunch. They would all chip in and really enjoy their time together on Tuesdays. That gave me some cherished time, too.

I hope I’ve sparked an idea or two for my readers. We’re all going to be in a position of needing the generosity of other people at some time in our lives. Let your creativity shine and you’ll be prepared to let others know what you need when your time comes.

I wish you love and fun.

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But, I Never Wanted to be a Nurse!

multitasking

When I was in high school girls who took “college prep” courses were expected to become a teacher, a nurse or a secretary. I never wanted to be any of those professions. My test scores indicated that I should become a mechanical engineer. In my mind, girls didn’t become engineers. I took a traditional path; got married and had children at a young age. I went to college later and got a bachelor’s degree in financial accounting because I still couldn’t figure out what I wanted to be and I had a head for figures. Nursing was the last profession for me and because English was my worst subject, you know I shunned being a secretary or a teacher.

It often takes a lifetime of many experiences to figure out who we are. It was my image of a being a “classroom” teacher of children, a “hospital” nurse or an “office” secretary that I was opposed to, I realize that now. Eventually, I became all three! Just not in those settings.

As a Caregiver, we often spend time sitting with our loved one in silence. One of the advantages of that is the opportunity to reflect on our lives. It’s a chance to examine where we’ve been and why those experiences had to take place in order to prepare us for our next adventure. I use my own life here as an example of the variety of experiences it takes to gain the skills that were needed to be an effective Caregiver and lead me to my life’s work.

Do you know how talented you are; how many skills it takes to do anything that’s needed as needed? On the spot we learn to administer medications with needles and through tubes, perform nursing tasks that are usually done behind the closed curtain in a hospital, we deal with time consuming administrative and legal issues, we orchestrate the management of a household and all it’s upkeep under unusual circumstances. When someone comes in to relieve us we teach them all the things they need to know to keep things going temporarily. We’re nurses, teachers and secretaries whether we know it or not. We’re, also, engineers and accountants and students.

With all your talents, what are you going to do next? When you’re sitting in the silence, maybe while the person in your charge is sleeping and you have time to reflect, I hope you let go of the difficult side of your tasks for a while and dream; dig deep down inside yourself about what would make you happy. It doesn’t have to be rational, practical or appear doable. Dreams are part of who we are, to be taken advantage of in a big way. They can come true if we nurture them and love ourselves enough to believe that we can do anything if we set our minds to it; after all, you’re doing the impossible now. Maybe reading or studying, while you’re in the position you’re in, about something that you have always been interested in, could be an inspiration for your next adventure.

When I was at home for three and a half years taking care of my husband, I would take the time when possible to get on the computer. Sometimes I would go to Google Earth and explore the streets of the towns in Southern Italy and Sicily where my grandfather and father were born. I would look at the shops and restaurants near the addresses of my family who still live there. I knew none of these relatives, but, I had the feeling that I wanted to know them. I didn’t even speak the language. Eventually, after my husband passed, I studied the language a bit and then it came about that I had the opportunity to go there and meet them. The trip was MERAVIGLIOSO (WONDERFUL)!

I believe that by focusing on my future and not on my current difficulties or isolation, I created the opportunity to take that wonderful trip to Italy. The dreaming took me out of my current situation temporarily, a respite. By improving my mood it helped me appreciate the time I had with my husband and see it as a labor of love and not an obligation. Caregiving is really hard, but we don’t want to lose ourselves in the difficulty and miss the opportunity to stay close to the one we care for. Mostly, we don’t want to lose ourselves. No regrets!

I wish you love and adventure!

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Acting Out

Allow me to help with you

What do you do when the person in your care is becoming unmanageable and maybe hostile? This subject has come up several times lately after I’ve given a speech on Caregiving. It’s a common problem and we need to be prepared for it. I’m talking about the elderly here and not the cases of young people who are under care. Although, the resolution of the situation may be similar.

Several years ago, when I was managing the care of my friend who had Alzheimer’s Disease, I was still in business as a financial advisor. The administrator of the assisted living facility where my friend lived had become my financial planning client. I had the advantage of spending time with this knowledgeable woman who, for many years, had dealt with hundreds of personalities in various stages of aging and dementia. I asked her one day if our personalities changed much as we aged. We do not all have dementia in old age, I want to make that clear. But, it’s common and effects people in a number of ways. What she told me was not surprising. I’ve taken notice over the years since and her observations seem to bear out as true.

She said that if we were sweet and easy to get along with when we were younger, we would, most likely, be the same in old age. If we were feisty or a contrarian when young, we would probably be difficult as an elderly person, especially if we suffered from dementia. I’ve often asked a person who tells me that their mom has been acting out and maybe even tried to hit someone, if she was always a bit feisty. The answer is inevitably yes, she wasn’t the easiest to get along with when she was young. It’s interesting, I see this more often in women than men. They just don’t want someone telling them what to do and they’re often not polite about it. There is no reasoning with someone who can’t any longer control their emotions. Those who will listen to what someone says they can’t do anymore often feel very badly and might even apologize. But, don’t expect anything to change for long. They can’t help themselves, their brain is not functioning as it used to. We must accept this as part of the malady and have compassion.

This is how it’s going to be for a time. It’s often not a long time, depending on the health of the person involved. As I’ve observed it, these stages progress over months. Before you know it, you’re past this volatile stage and onto the next, which is usually a higher level of physical care being required because health is diminishing. It’s not the same for everyone and I’m speaking in generalities. I’ve personally cared for three different people over a period of sixteen years, as I’ve mentioned previously. And if there’s one thing I know for sure, it’s that nothing stays the same for long. As Caregivers, we are constantly moving through and past the stages of decline.

So what do you do? This is just my opinion, everyone should have a plan for this kind of event, but I’m often asked this question so I want to address it. Please have a plan of your own in place.

First, make sure the Caregiver is safe as well as the patient. If the patient is at home with a hired caregiver that has been lashed out at, the agency (if there is one) needs to be notified immediately. They’re prepared for events like this and should have prepared their employees. They will speak with the people who contracted with them and resolve the situation. But, be safe first. If it’s a really bad situation, call 911. If not through an agency the people/family who hired the help or is the Caregiver themselves need to speak to the doctor in charge of primary care. Maybe a change in medication is all that’s needed.

Did I mention: SAFETY FIRST?

It’s time to reevaluate the level of care your loved one needs. We don’t like to hear this. It means change. It, also, often means more cost. It’s absolutely necessary that all involved recognize the progress in the condition of the patient. I had to change the residence of my friend who had Alzheimer’s a few times, eventually to a dementia care unit. If the patient lives in an assisted living facility, the administrators there will be helpful in making recommendations. If they live at home and/or with family, I would talk to the doctor about the level of care to expect next and be ready for with a plan for the next stage. That way you won’t be caught off guard if things change suddenly, as is often the case. Know what your insurance companies will pay for and how you will be reimbursed. I would ask an administrator of an assisted living facility for advice on the local options if you need to move your loved one to professional care, even if the patient doesn’t live at their property. They are most often happy to help the community and make referrals.

I wish you love and compassion.

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The Tipping Point

tipping

After speaking to a group of caregivers some months ago, a very nice young woman, who was the sole caregiver for her mother, asked to speak to me privately. The misery she was feeling literally radiated from her. I can still feel it as I picture her that day. She was on the verge of tears the whole time we spoke. It was heartbreaking to see how she was suffering.

This young woman, obviously, cared a great deal for her mother, who she wanted to be safe and comfortable in her old age. She loved her mother and wanted to do what’s best and right. But, she needed a life of her own. She was alone, unfulfilled professionally and believed herself to be held back and trapped.

This is a tipping point.

A tipping point happens when a caregiver can’t figure out how to fix things anymore. It’s not just a cry for help, it’s the point where something is forced to happen. The caregiver forces it. It’s a shift. You shift into another place, mentally. It’s necessary for survival.

This young woman instinctively knew she had to make a choice. She could continue in her misery and we would see her sometime later more unhappy and possibly ill herself or she could decide to take action. Action would be, making a firm decision to change the situation. That’s the shift. Once she had decided that something big was going to change, she would be somewhat out of her own way to come up with ideas on what to do to free herself up so she could have her own life back. That’s what she told me she wanted, “her own life back.”

It’s amazing how the right situations or people will show up in our lives, just as we need them, if we allow ourselves to be open to solutions. Was it a coincidence that she found herself in our group discussion at just this time? I don’t think so.

I wish you love.

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Grieving

grieving

Is there anything we experience in life that brings us back to how human and vulnerable we are than grief? No matter what we’ve accomplished, or how well educated or intelligent we think we are, the loss of someone we care about hits us all in the same place. How we handle our grief is critical to the course of the remainder of our lives.

Having lost five people who were close to me over the last eight years, all to long illnesses, I’ve experienced grief in many ways. Still, I have no idea how I will handle the next one, or the one after that. Each loss is different and personal. If I ever need professional help, I will seek it. I’ll know I need it because the sadness will effect how I function in my daily life to the extent that it will keep me from moving forward. I would know, in the pit of my stomach, that I needed help. That this time I couldn’t do it on my own.

When my husband passed away in March of 2010, I had been confined to our home for about three and a half years. I’ve spoken about how I got through that confinement, with the help of some wonderful people that came to relieve me periodically, but I assure you, it was a confinement. The things I did to keep my head on straight are the subjects of my other blog posts. Sadness and a kind of disorientation about my life during that first year without him was predominant. That is what I want to discuss today.

About two weeks or so after my husband passed, I knew I should call his doctors and let them know. There were regular appointments scheduled and we would not be keeping them, that created urgency. They were hard calls to make. Some of these doctors he/we had been seeing for many years and it would be a sad call. One of the doctors was a psychiatrist. We saw him because of severe sleeplessness, originally. We were both very comfortable with him and were happy to see him regularly, especially as symptoms multiplied.

Maybe about a month or two before my husband passed, I called this psychiatrist and asked if I should come to see him on my own. Did he think it would be beneficial to me? He said he couldn’t see me as a patient unless he had my husband’s written permission. That was out, it would only make my husband feel bad and uneasy about my needs, he had enough to deal with of his own. I trusted this doctor and did not even consider seeing anyone else.

When I made the call to let him know about my husband’s passing, I asked him if he thought I should come and see him now, to make sure I was “OK.” He said he thought I would be fine, that I was very strong and could get through this. But, if I got to a point where I thought I needed to talk to someone, to please call. He gave me some advice that I often recall, it really helped. That’s what I want to share today.

He said there would be many firsts; the first birthdays without each other, first anniversary alone, first holidays when his chair at the table would be empty, etc. But, that I would get past it and go on just fine. I feel sad right now just thinking of those firsts. He was right, they were the hardest. Over three years later, I still miss him, especially on those days, but it’s not nearly as painful.

About two weeks before the first anniversary of his passing, it suddenly occurred to me that I didn’t want to feel sad anymore. I didn’t want to think about the loss of him anymore and the hard parts of the illness. I didn’t want to keep reviewing his suffering and what I might have done differently. I wanted to start thinking about all the good times we had together. I made up my mind that day that I would only think about the happy times and all the fun we had over those twenty-eight years.

I know I needed a year of sadness. That was the main part of my grieving. That year gave me the strength to wake up one day and decide to be happy from that point on. About a month after that, I made some major decisions that changed my life entirely. It felt great.

There are still some firsts, like the first time I went back to our favorite restaurant without him, where we had our first date (whew, that was hard!). Why shouldn’t it be hard? You don’t want to forget, you just want to go on living well. You’re remembering the good times.

I hope you live well and I wish you lovely memories.

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Thank you,

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