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

Those of us caring for an aging loved one know about resistance all too well. Sometimes it is beyond reasoning and begging to get our loved one to perform the simplest of daily tasks. I’d like to offer a couple of tips I’ve learned over the years to entice your resistant loved one in a positive way.

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

A spousal caregiver recently told me he looks at his watch all day for the time he will experience the joy of seeing his wife and when his eyes meet hers his joy turns to pain as she can’t remember who he is.

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

Do you share caregiving duties with another family member? Do you give the primary caregiver in your family time off? If you answered yes to one of these two questions, you are not alone. Thousands of families are providing care for an aging relative. Up to 70% of all care is provided by families in the Untied States.

If you work all week and then get mom or dad for the two days you are off, it can be stressful if you have not had any training or are unsure of how to communicate effectively with someone who has a dementia. Actually the latter could make your two days extremely stressful if you don’t know the tricks of effective communication.

A few helpful hints to being a short time (or relief) family caregiver:

1) Check in with the person who was providing care the day before to see what the issues or behavior was – so you will know if something is new and warrants a call to a doctor.
2) Take a class on how to communicate effectively with someone who has a dementia (we offer monthly free classes at Eldercare). This can save you hours of frustration.
3) Have a routine that is similar to the routine during the other days of caregiving – times of meals, medications, walks, favorite TV shows or movies.
4) Have a plan to deal with boredom or increased anxiety – such as a car ride to watch boats coming and going from a dock or children playing at a playground or to a vineyard or orchard.
5) If possible, ask the person you are caring for to help you – fold towels, laundry or napkins – cut coupons from the Sunday paper. These tasks make the care receiver feel helpful. Don’t be fussy – what ever they do, say, “Thanks – that saved me lots of time”!
6) Pets can be entertaining and soothing – but also, can be more work. So use caution when adding pets to your home or that of your parent.
7) Try not to correct misinformation unless the person is at risk – just have a response that is non-committal – like, “That is interesting.” Or “Oh, really?”. If conversations get too crazy, just change the subject – bird baths or feeders are great for leading someone away from a stuck place to watch the birds.

These are just generic ideas – each individual and family might have different issues and an hour with a “geriatric coach” otherwise known as a “care manager” might help you design activities that lighten your load and reduce stress and anxiety for everyone.

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Eileen Zagelow, BA, CMC | Professional Geriatric Care Manager/Director of Care Management Services

There are many aspects to consider when we think about moving a parent or other loved one from their current home to an assisted facility. The family is often immersed in an entirely new world filled with new terms, financial contracts and “levels of care”. As advocates, we do our best to find the best fit at the right price. We worry about moving day, what to move and how to orchestrate the day.

The next dilemma, that often arises, is that Mom is unhappy and asking to go home. How long will it take for her to adjust? It has already been 2 weeks!

When we are supporting someone with memory issues, we learn that time takes on a new meaning. It becomes a vague expandable context for change. One thing I always suggest to families is that they practice patience and think about how they feel when they are contemplating a move for themselves. There is the anticipation, planning, anxiety – what if there are obstacles to running smoothly?? What if the kids don’t like the new house – lots of what ifs! Then there is the actuality of the move – OK, so here I am – where is the grocery store, the book store, the pharmacy – all of the things I need? I don’t know anyone. All of these feelings bubble up, even though you chose this move, planned this move and executed this move!

A person with memory loss often should not be intimately involved in the planning and execution. Mom may not be involved in the move and may or may not remember if she was. It often feels as though Mom has been transplanted to a very attractive place where the people seem nice, but thinks, heavens – why am I here? Who are these people in the hall? – I don’t know anyone. Where is my favorite coffee cup, my toaster – my dog? I don’t like this and I don’t think I will.

The solution takes time, reassurance and lots of support to integrate Mom into her new life. As a Care Manager, I usually recommend that a caregiver come a few days a week for just a few hours and help the person find her way into her new world. For a while, your loved one will be straddling a divide between old and new. Whereas we “well” people feel more comfortable negotiating our way through new routines and new friendships, they often need help in getting to that phase. In addition, because there is a memory or cognitive problem, the progress is often much slower, occurring in that vague context of time.

It can take a person with memory issues 3 to 6 months to adjust to a move. In the meanwhile we build a safe container around our loved one to soften the adjustments and reframe them as we go. Geriatric Care Managers are very skilled at supporting loved ones and family members in this very delicate journey.

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

My heart and the mind are in conflict – a challenging choice.

Today the doctor suggests Hospice; a wonderful supportive process of ushering one from this life to the next, with dignity and comfort. My experience says this is a good plan as I have appreciated the wonderful care my clients have received from all the terrific hospice professionals over my 30 years in Geriatric Care Management.

But, for my mom, it can’t be that time – because I don’t want it to be that time. I want her in my life.   So do my brothers and all the grandchildren and great grandchildren. It is so hard to envision holidays and family milestones without her.

I have stepped up my advocacy for mom these past two years.  I know it was that advocacy combined with her never giving up that gave her the last year in Assisted Living in a lifestyle she enjoyed.  If she had stayed in her home I think we would have had to say our goodbyes long ago. One thing that has contributed to her 90 years is her ability to let go of stress and worry. With
every hospital stay she has never fretted or been anxious – is this a lesson for all of us?

I will need to embrace the circle of life because there is no alternative, despite my skills or incredible love for a good mother.

I will talk with the hospice team and with my mom about our choices but I will not give up on hope or the possibility of her bouncing back like she has done so many times before. For where there is love there is hope.

Mom is part of me and all my family so when she does pass from this physical life to heaven’s doors, she will live through each of us in so many little and big ways – we will never truly lose her.

Love is doing what we need, not what we want. Hard choices face us on this journey we share - life!

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

I sit listening to my mother snore – wondering, is this the trip she doesn’t return from? This is the 8th hospital visit in 13 months and she is almost 90 years old. I need to be realistic; this is my field of expertise and I know what the consequences are of her many diagnoses. Yet I can’t get that picture out of my mind of her walking into my office yesterday with one of my staff who had just taken her to a medical appointment for me since I couldn’t attend because I had a speaking engagement.

She was so happy to see me and the other staff. She always gets a certain grin that tells me she is proud of my achievements – it is a grin like no others. Who can give you that unconditional approval like a mother? Is this what I will miss – it feels self-centered to even think this because I know I will miss her for her always helpful advice and her deep faith in a loving God. Not to mention her love for all of her family.

She is a fighter and will not give in so I will stand beside her and help her understand her options and advocate for her at every step on this slippery journey.

All of us need advocates for, without them, our history might not be conveyed in ways that assist the medical team to treat appropriately. We also need advocates to see we can be gently ushered unto our next life, based on our values.

Being the guide when the ultimate outcome is loss and grief isn’t for the faint of heart but this is the role I play in mom’s life now, and it is an honor. I am fortunate she was, and is, my mother.

Thank you, kind and considerate medical providers who work in the ER!

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

As I move more and more into the role of a family caregiver and take my mother to her doctor appointments, I have been acutely aware of the conversations of daughters and occasionally a son to mom or dad.

Then I remember the last time I took mom to an appointment – seems to be about every 10 days to 2 weeks. Yes, even with 30 years experience I still answer those repetitive questions as kindly as I can and inside I feel pain for the mother I have lost due to the devastation of a dementia. I must admit I have the tools to use to divert and redirect the conversations, yet inside at the core of my being, I feel grief (and with a smile).

I don’t think my mother has a clue how her changes affect me – however she seems to tell each doctor, “I don’t have to worry, I have her” – she says as she points to me! And with that, I know my love is visible and my grief is hidden.

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Professional Geriatric Care Manager, Eldercare Services, Jean Tokarek, MPA, CMC

Realizing that your loved one’s end of life is upon you is not an easy event to face or admit.  Telltale signs can include refusing to eat or take medications, taking to their bed, sleeping all day and having more difficulty with ambulation.

When this occurs, their primary care doctor should be contacted who may order some lab tests to rule out any vitamin deficiencies, dehydration, assess for depression or other things medical going on with the body.  If the doctor clearly feels that Mom or Dad is at the end of their life, hospice services can be ordered and brought into the home to make their last months most comfortable and a reflective time to be had with family members and friends.

The hospice team can be a godsend when Mom or Dad’s household and health are in a state of flux.  The RN case manager will assess the patient for pain and symptoms, recommend comfort medication and order medical equipment such as a hospital bed to relieve pain and suffering, and educate family members and other caregivers on what to expect when your loved one declines in function.  The social worker will help out with any practical financial issues like Powers of Attorney, burial plans and hiring additional in home care if needed.  A home health aide will come to the house 2 to 3 times a week to give patient a bath or shower and change the bed linens.

Volunteers are available to be with the patient and give family members a break for a few hours a week.  The chaplain will make home visits to attend to Mom or Dad’s spiritual care and a bereavement counselor will work with patient and family members with any anticipatory grief concerns.  The hospice team will work very closely with the family and or care manager with any medical or psychosocial concerns of the patient.

One of the hardest things for both family members and caregivers to watch is when your loved one stops eating.  When this happens, they can lose weight very quickly and rarely relieve their bowel or bladder.  It is best to encourage Mom or Dad to eat but not force feed.  At this point, the patient knows when they have had enough and gradually their body will begin to shut down.

When the eating process slows down, it is not painful to them but important to know that the patient needs to be kept comfortable.  An extra blanket, some soft music that they enjoy, ice chips for thirst, a cold cloth on the forehead and a gentle touch of the arm can mean so much.  It is also during this time that meaningful conversations can be conducted with family members and friends to reminisce about happy, earlier times and to let your loved one know how much he/she means to you.

Hospice RN’s are also available to the patient and family 24-hours per day.  If there is a drastic change in medical condition with your loved one, it will provide comfort to the family to know that an RN on the other end of the line and his/her expertise is only a phone call away.

End of life situations can be a very difficult thing to plan for and discuss with family members.  Knowing that there are resources available and having the discussion on how to proceed sooner rather than later will make the last chapter of a loved one’s life less chaotic and will be spent comfortably and surrounded by people who are very important to them every step of the way.

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

My mother was hospitalized with pneumonia for four days and when I went to help with the discharge I brought her clothes.  As I helped her get dressed we struggled with her camisole and she said, “When you were little I helped you get dressed now you are helping me.”  And, I said, “but I didn’t have all the same body parts as you then” and we laughed till the tears came as she was caught in the camisole!

There was pure joy in that laughter even though for both of us on some level experienced grief from the lost of independence for mom and the loss of my once fiercely independent mother for me.

As a daughter and a professional, I am able to take her comments that might hurt me and softly explain without defending myself or using rationalization in my response in order that she doesn’t feel bad about her loss of memory or independence.  This doesn’t mean I don’t need to process my feelings with family, friends and colleagues.

A good example is she called yesterday and said, “Did you know I was in the hospital?”  Of course I did!  I brought her there and I was there till 9PM the night before.  But, my answer was not that – it was, “Yes, I know and I am waiting to hear what time
you will be discharged today.”   This answer completely made her feel heard and not bad that she could not remember.

Our responses to our parents who are losing memory and independence can make all the difference to their quality of life.   Love does get though; however, it can bring joy as you look at this passage as a gift of learning, giving and just being!

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