2011 March

I Fear My Mother Will Die Not Loving Me…

Posted in adult children, Age Related Issues, Care Management, Caregiving, Dementia and Memory Loss, Relationships on March 29, 2011

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

I sign her out of the hospital rehab and bring her to my house for lunch. She sees her face and the droopy side for the first time and that her always perfectly coifed hair wasn’t looking very good – and said, “Ah! Look at my face”. I had to remind her it was from the stroke. Soon after that realization, I take her and her beloved cat to the Assisted Living Community. My brothers had moved all her own furniture in, hung her clothes and stocked the cabinets. Her computer is up and running – as my brother calls it “the $1,000 solitaire machine”. It looks very welcoming, just like mom’s home, and it has a nice little view of a courtyard with a fountain.

The day before, my brother and I cleaned and cleared a portion of her old home and chose the furniture for the new apartment. We laughed at the dated items as the memories of our childhood flooded our minds and yet, we felt sad too. We grew up in a very neat, orderly house and we were standing in clutter and disorganization. Surely this was a sign that she was having the small strokes we didn’t have diagnosed until this one took away her ability to drive, her ability to speak clearly and some cognitive changes in the realm of memory and insight.

Mom was delighted to see my brother who lives a few hours away and gave him a big smile and she always laughs at my other brother who is very funny. But, when she is trying to figure out how she got here and why she is here, it is me she is mad at – I get the scowls and frowns. It is me who works and has worked a few hours every day and many hours on this day trying to give her the highest quality of life possible…but I can’t undo the damage of a stroke.

Just before I left last night, she wanted to know what happens tomorrow and where I would be. I explained to her about taking the community bus to church. And then she said, “What happens next?” and I explained to her that her out patient therapy will begin and again she asked, “Then where do I go the next day?” I answered, “You need to work on getting stronger”. But in my heart I know she was asking, “When do I go back to MY HOME!” I know she doesn’t have insight – but the cynical me wanted to say, “You think we moved all your furniture here for two or three days?” She didn’t have a smile; she looked disappointed and somewhat angry with me.

I went home and cried a lot…thinking she could die not loving me.

Mom’s Going to Assisted Living – Am I Ready?

Posted in adult children, Age Related Issues, Blog, Care Management, Caregiving, Dementia and Memory Loss, Relationships on March 25, 2011

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Tomorrow is the day I break through any denial that my mother needed help. Yet, I still feel somewhat guilty and know better on a professional and concrete level – she has had at least 4 small strokes! This one just hit her harder and has impaired her ability to speak clearly and remember what happened recently – but, not her long-term memory, ambulation or her ability to self-care. Yes, she will need some stay-by assistance in the shower and her medications managed.

When I saw the admission papers, filled out by a doctor who doesn’t know her and probably spent less that an hour total with her over a 10 day period, say that she was “non-ambulatory because of her cognitive status”, I really thought I was going to lose it. Because if this was a “fact”, it would mean that cute little apartment on the second floor, that I spent three hours setting up phones, cable and renters insurance, would not work – and move-in is tomorrow! Yikes – it makes one want to run to the airport for the next flight to an exotic country!

Once I settled in and the delightful retirement counselor at the assisted living said that another doctor most likely would say she was ambulatory. I didn’t quite rest until I talked with another wonderful person, the discharge planner/case manager on the rehab unit who said, “Of course your mother is ambulatory and she is doing very well.” Then I breathed a sigh of relief – but it is truly a “three ring circus” trying to make sound decisions for someone you love in the midst of grieving the loss of the person who was and is no longer.

The discharge planner said she would have a word with the doctor that said she was not ambulatory. I don’t think that physicians understand what this means in terms of choices for families or maybe they just don’t know their patients very well – as the relationship is only short-term before they write these orders.

Now the questions flow through my mind– will she adjust? Will she resist staying? Will she like her apartment and the furniture we chose? Will she continue to love me?

Mom Had a Stroke – If I Move Her, Will She Still Love Me?

Posted in adult children, Age Related Issues, Blog, Care Management, Caregiving, Dementia and Memory Loss, Relationships on March 22, 2011

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Wow, as I walked into my mom’s rehab room yesterday – she pointed to me and said to the aid behind her, “I don’t like her – she put me here.” Mind you, she is in one of the best rehab centers she could be in post stroke and one that is sometimes difficult to get admitted into. So, of course the rational part of me wanted to tell her how lucky she was to be in this place. But, the emotional part of me was crushed (however I kept my cool).

What I said was, “Have you been working hard today”? “Are you tired?” And, I said that with a smile. She said she wasn’t tired but I discovered in the next hour that she had participated in two therapy sessions and a neuropsychological evaluation. I know from my 27 years working with clients, when someone doesn’t do well on those tests they really feel bad about themselves (they are often aware they didn’t answer questions correctly) and can project that anger onto family members or medical providers. The results of these tests help families make sound decisions because they reveal functional capacity in the realm of self-care, judgment, memory and safety.

I also found out from the young, caring physical therapist that she was angry in the morning and asking who put her in the unit and he (rightly) said, “Your daughter”. True as that is, logically and/or legally, I told him in the future if someone asks that question, always first say, “It was the stroke, accident, surgery – whatever the reason is for the therapy and not the daughter, son, spouse or friend.” He thanked me for that little lesson – hope he remembers for your parent!

I talked briefly with the neuropsychologist who told me her memory, insight and safety awareness were greatly affected by her stroke. And even thought she might have another 10 days in the rehab unit. My family, but primarily me, will need to explore placement options.

My mom didn’t like me because I arranged for the best rehab, how much will she like me or even love me when I find her an assisted living environment? The move will mean giving up a home in an urban setting and moving 30 miles to be closer to one of my brothers and me. It will also mean leaving her connections to two senior programs and the small church she has been active in for over 70 years.

I am going to have to resource the “spiritual” side of my soul to walk this tightrope because my clinical skills and love for my mother will not be enough

Helping a Parent with Personal Care…

Posted in adult children, Age Related Issues, Blog, Care Management, Caregiving, Relationships on March 18, 2011

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

…. It was just the lipstick! But, I found out today, my mother who is 6 days post stroke and has significant deficits, which affect the right side of her face that putting on lipstick can be a fun activity!

Mom was searching for a mirror after seeing the tube of lipstick I had left for her along with her comb, beloved hair net and hair clips. When it looked as if she didn’t have one at bedside, I said I would put it on her – however, I said, “Now, don’t laugh” and of course she did! The lipstick went up the side of her face and then I started laughing! Eventually I got it on correctly and even though she has a one-sided smile it made her look healthy and almost like my mother of a week ago – but not quite.

The reality of what happens next is daunting and a most difficult decision – where does she go after rehab?

The good news for me is that even though this is not a journey I would wish on any family, we can have moments of absolute pleasure in the activities of daily living.

I guess if I have to assist with any other personal care tasks, the lesson is to make it fun. Not making fun of another but having fun.

Dining Room Table Clutter – From Mom to Me!

Posted in adult children, Age Related Issues, Blog, Care Management, Caregiving, Dementia and Memory Loss, home care, Relationships on March 11, 2011

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

I had been concerned about my mother’s increasing clutter of paper over the past three years and now I need to take over the managing of her affairs due to her stroke – my dining room table looks likes hers did! Hope the clutter police aren’t close by!

Taking over the paperwork of a family member can become a full time detective job and seems to take a football field to sort out all the unnecessary documents from those that need immediate attention or to be filed for future reference. What is that receipt for $2.50 for a senior club bingo card doing with a legal document that needs to be returned to her attorney? Why did she stop payment on a check for $25 to her church – maybe she didn’t like the sermon? And another stop payment for $7 to her doctor – doesn’t the bank charge us $25 to stop payment? Why does one need to keep a copy of every bill ever paid…and in that pile is one that was due last week!? Yikes…will I untangle this?

Interesting, messy and sometimes confusing but it is doable. The work is concrete and I don’t feel sad or angry going over the documents. It is a job an adult child of an aging parent could do from a distance. So, pack up that box of paper and send it off to your brother!

The hard part is seeing her changes and knowing she will never be the mother I had just a few months ago. But, despite my grief and having her project some of her anger unto me, I love her even more. I pray I can be kind and look for the sunshine in every minute I have with her. She was a good and kind mother – sweet and caring to all she has met. This doesn’t mean she didn’t gossip – but I don’t think in my entire life I saw her get angry with another adult and be less than a lady. What a legacy she has modeled for her heirs – better than financial resources is a legacy of kindness.

When A Caregiver Needs Help — When Exactly?

Posted in adult children, Age Related Issues, Alzheimer's, Care Management, Caregiving, Dementia and Memory Loss, home care, Relationships on March 8, 2011

Professional Geriatric Care Manager Supervisor Eileen Zagelow, BA, CMC

Like most things in life this varies by person and situation. Those of us who have worked in this field for a while, though, recognize some common signs.

If you are thinking about it – needing help that is, chances are your instincts are leading you to fulfill a need. As a caregiver, if you find yourself feeling edgy, tired, anxious or short of temper while caring for someone, it is time to check into care options.

It is never too early to investigate care options. Knowing about services before you need to use them is very wise indeed.

Like many things in life, we often wait until we truly feel and understand our need for something before we go after it. We want to be absolutely sure!! By then we are usually pretty sure, however we are often quite behind in the planning process.

These guidelines might be helpful to you.

1. Do you find yourself lacking joy in your life? Depression can be an insidious process and moves in comfortably without a person being any the wiser.

2. Do you find yourself becoming angry with the person you are caring for? Are their behaviors or constant questions becoming quite annoying?

3. Are you feeling exhausted or having trouble sleeping? Are you feeling anxious?

4. Do your friends or colleagues notice a difference in you?

5. Is your health suffering? Does your immune system seem suppressed?

6. Are you having trouble organizing and getting things done?

7. Are you feeling stressed regularly?

8. Are your relationships suffering?

These are a few signs that you are in need of support. Support groups are in abundance and a place where you can find understanding, camaraderie and much needed resources.

Day programs are a wonderful resource. You can bring the person you care for to such a program so that you can both enjoy a bit of respite. It very often means that it is time to hire help in the home. Sometimes this can be a small amount of help with a lot of benefit. Other times more attendant help is needed.

A Geriatric Care Manager can help you navigate the steps in reducing and/or eliminating the warning signs in your life. He/She can help you figure out whether the time has come to utilize some caregiving support and how much that may be. Remember, that making an inquiring phone call is not a commitment; it is just a phone call. However, it is a very important step to take – it can’t hurt and can only help.

Parenting Your Parent? No, Not Me!

Posted in adult children, Age Related Issues, Alzheimer's, Blog, Care Management, Caregiving, Dementia and Memory Loss, home care, Relationships on March 4, 2011

Founder and Executive Director Linda Fodrini-Johnson, MA, MFT, CMC

Over the past 27 years, I have worked with many families, professionals and peers around the idea of “role reversal and the thought of parenting your parent.” I have opposed that notion saying frequently that you can’t reverse your role with your mom or dad, no matter what the dependency, they are still your parent and you are an adult child (not a child).

However, my mother said to me this week that she told the ladies in her club that her daughter was her new “mother.” She said this with a smile and not in anger – in fact she thanked me for all I’m doing for her despite my career and family.

But, her comments have me thinking about how I might remind her to take her medications without being “bossy” or making her feel as if she can’t do anything on her own. I try to take turns with my brothers calling her in the evening to remind her to take her most important medications; blood thinners. Without them she is at risk for a stroke due to Atrial-fib, which recently caused some blood clots, thus the new medication.

I also took over setting up her medications after catching an error from the home health nurse and, if left up to Mom, I’m not sure she would take her medications more than once a day. I now travel an hour each way to set up these medications and I place the important bedtime ones in her bathroom where she has a ritual of pinning her hair and cleaning her teeth. A post-it note points to the 7 day medi-set that says take before bed.

My phone calls remind her, but she says, “I take my medications” – and yet when I filled them this week there were 3 days still left in the containers.

I love my mother and want to respect her autonomy, but her safety is now an issue. She is almost 89 years old and still drives and lives in a major city.

Now my weekly visits are exposing me to her increasing clutter and inability to organize her paperwork. I know she is failing, but I don’t like what I am seeing because it means I am going to have to intervene more to keep her safe. I don’t want to be her mother.

I have said to my clients that it isn’t you taking the control away, it is (name the illness). However, it sure feels like it is me.

Parent care is “tough love” and just about as hard as parenting a teenager. As tough as it is, I know what I feel is “grief” – losing her bit by bit to what looks to be a progressive dementia.

The only thing I can say is that I am glad my dad is gone and he doesn’t have to experience seeing the love of his life leave him part by part.

Keep saying “I love you” to all in your life – for the path is shorter than we can imagine. And, oh yes – we are right behind them!