What happens when the caregiver is ill or away?

The flu has been everywhere this year. I had a bout and was out for a week. Having the flu and unable to provide support for Rick was worrisome but we did ok. But it made me acutely aware of a topic that we have not discussed - What do you do when the caregiver is ill?

Stroke survivors have several levels of care. Some are pretty independent with minimal assistance and yet others require full time care. How do you plan? What are your options? How to keep them safe? and what you need to do to recover?

This has become a topic of concern lately at support groups. This week, I would like to share some ideas and strategies on how to navigate care when you are ill or away from home?

4 key items:

• Identify all of your options for care

• Develop a plan

• Develop a plan of care for the support person to follow.

• Your plan for YOU

Identify all of your options for care

U.S. News published an excellent article written by Payton Sy, RN. “What is Respite Care and Where Can I find Respite Caregivers Near Me?” Great information!!!

Respite Care: How to Find It, Keep It and Cost | U.S. News

Respite Care provides short-term relief for caregivers. These include adult day centers, home health care, in-home caregiving, informal family support and temporary stays at an assisted living community.

Costs of respite care can vary, depending on the option you choose, but you may be able to use benefits from Medicare, Medicaid and Medicare Advantage to help pay. Private funding may also be available.

There are multiple resources available for caregivers from organizations like the ARCH National Respite Network and Resource Center, the National Adult Day Services Association and the Alzheimer’s Association.

Develop a plan

The best to plan is prior to discharge home from rehab. This allows you time to check out options. But if you are like me, I was living day to day on what would come next. This is also something that only you can provide. Asking family or a friend to help with the plan is the ideal route. They will be able to do the leg work and also identify needs that you have not thought of.

What needs to be in the plan:

• Primary contact to initiate respite care.

• The chosen options that are arranged and which one is appropriate for the situation. Is it an urgent need when you are suddenly ill or is it for a planned respite?

• Who to contact at the chosen options and numbers.

• Who will arrange transportation, review plan of care, and provide medical/financial information to the chosen option

• Who will be the primary contact and decision maker when the primary caregiver is out. This will require some legal forms to be completed. Check with your lawyer, local social worker, or check online for your states requirements. Many of the respite options can also provide you with this needed information.

Develop a plan of care

The plan of care is a simple tool that provides the individual covering the stroke survivors key information to properly care for them. I recommend that a folder is available with the plan.

Plan of Care should include but not limited to:

• Name and demographics.

• Copy of their medical cards, MD names, and what hospital they go to

• Legal Papers that your support can make decisions

• Medical History - Just a list of conditions and the date and location of the stroke

• Medication list and when taken. Include any special instructions, such as when to hold a medication

• Typical day

• Daily challenges and how best to deal. For example; they get angry when you ask them to take meds, tips for providing nutrition (what they will eat), or things that they may try that are not safe

• When to call the MD office versus calling 911 or going to the ER

Your plan for YOU

Having someone else care for your loved one is stressful. You don’t want to be a burden. You feel guilty taking time away and what if something happens.

Take a deep breath. Prior to the stroke, you had no control over the future and it is the same now. Check in daily with your support person. Provide them with support and answer any questions. DO NOT share “I know this can be a lot, I can come home”

You need the rest so that you come back healthy, refreshed, and ready to take on the ongoing care. Lastly, make it a routine to check out this website and the Facebook site: stroke caregiver connection. You will be glad that you did.

Stroke Caregiver Connection…Because you care!

Why is routine so important for Stroke Survivors?

We all have our daily routines. Some are harder than others (Like exercise) but they help us to navigate our day. When a loved one has a stroke, normal routines from pre-stroke are a thing of the past. There is life and hope post stroke, and the new routines will become second nature.

Why is it important for everyone to have routine in life, especially stroke survivors?

Routine:

• Helps to reduce daily decisions. The SS knows what tasks are needed each day and the need to decide and struggle to think too much on the task is eliminated. It becomes habit.

• Helps to provide structure. A typical SS and caregiver day can vary from day to day. With a structure to your day, both are better able to handle changes. They are able to plan the day and allow for spontaneity. It is common post stroke to feel that you have lost control of your life. The act of doing routine tasks provides a sense of control. No task is too small.

• Helps to decrease stress. Having a routine plan for the day helps the SS better navigate and feel a sense of control for their day. When the routines become second nature, self-confidence begins to build. When you feel you have conquered a routine task, you are more willing to take on additional and out of their comfort zone activities.

How does having a routine help the caregiver?

After my husbands stroke, my life was turned upside down. All of my normal routines came to a halt, and I needed to learn to navigate a new normal for myself and my husband. The amount of stress experienced when not knowing what to expect was immense. What I learned is that once he was home, we needed to add back simple routines in our life. When my husband began to feel that our routines were second nature, my stress decreased. Why? He had a plan for the day, and I was not providing and reminding him of needed care.

The other benefit was that when I needed someone to step in, it was very easy to share what he needed and his routine. This gave my husband self-confidence but also kept him safe. The friends that stepped in, appreciated the routine.

What routines are important to incorporate?

• Medications taken at the same time

• Hydration is important. Setting a timer every 2 hours as a reminder to drink water.

• Activity time - This could be time for rehab. exercises, going for a walk, word puzzles or games. Anything that requires movement and brain stimualtion

• Rest - a scheduled afternoon nap can do wonders for both. A nap provides an opportunity to rest your mind and your body.

• Socialization - This includes leaving the house each day, calling a friend, support group or conversations without distractions.

• Personal Care - Bathing can be a challenge. Schedule which day to accomplish this task. A daily bath is not needed unless an accident occurs.

• Schedule routines - not everything is a daily routine. Decide what works for you and what you feel needs to be daily. I know that stopping doing everything daily helped with my energy level and stress.

Lastly, make it a routine to check out this website and the Facebook site: stroke caregiver connection. You will be glad that you did.

Stroke Caregiver Connection…Because you care!

The Upsides of Ongoing Therapeutic Sessions

Once Rick had completed his physical, occupational and speech therapy post stroke, I assumed that this was it. This was as good as it gets! I was wrong. About 18 months later, we realized that he was declining. Immediately after discharge from therapy, he could do more and was motivated but as time passed, the motivation and improvements slowed down to a halt. As the caregiver, I gave up on pushing him to improve - He had to be motivated to improve.

Aha Moment

After several months, I noticed that Rick’s balance was getting worse, and his speech was getting more garbled.  He would try to compensate by using his non affected hand and limiting conversation.  He had become comfortable with the status quo.  My gut told me there was more that could be done and did some research that I want to share with you.  Bottom line --- Don’t give up!!!!

A study completed by NPR - www.npr.org › study-stroke-recovery-best-treatment

• A study of 72 stroke patients suggests this is a "critical period," when the brain has the greatest capacity to rewire.

• Regain more hand and arm function if intensive rehabilitation starts two to three months after the injury to their brain.

• The idea that there is a critical period when the brain is most able to recover is "something we've suspected all along, based on the animal models," says Dr. Jin-Moo Lee, chair of neurology at Washington University in St. Louis. "But this is really the first human evidence that there's a period in which rehab therapies are most effective in improving recovery."

Solution that worked for me.

I followed the below guidelines from www.stroke.org › rehab-therapy-after-a-stroke Rehab Therapy After a Stroke | American Stroke Association

 The American Stroke Association’s Together to End Stroke initiative, nationally sponsored by Kindred Hospital Rehabilitation Services, offers these recovery tips for stroke survivors and their caregivers:

1. Ask your doctor to assess the physical and cognitive challenges you face after stroke and provide a specific plan to address each challenge.

• We met with our MD and discussed a plan.  He provided an order for Physical Therapy and Speech Therapy. 

• The plan was to improve balance and walking.  The initial rehab goal was for him to be able to walk well enough to get home.  Now he was ready to be able to learn better walking skills.

• The second plan was to improve his speech.  He was able to be understood but he avoided conversation. 

2. Start your personalized rehabilitation program as soon as your medical team gives you the OK. Early rehabilitation matters. Recovery can take years, but the most rapid progress usually occurs during the first three months after a stroke.

• The early rehab helped but now after being home, we needed to address the deficits that needed finetuning.

• Met with a PT and she addressed the concerns.  He will always have to think about walking, but she taught him to properly walk, exercises to improve balance and motivation to work to not give up.

• Met with a ST and she addressed the concerns.  She was excellent in providing support to improve his communication – slow his speech, practice words and phrases that are difficult and to not stop.

3. After a few weeks of therapy, I noticed an improvement in his abilities but more importantly he had a renewed sense that he could improve certain aspects.  We both understand that what he lost with the stroke will never return 100%, any small improvement makes a BIG difference.

Financial Coverage:

Private Insurance –

Most plans have a yearly therapy benefit that requires a physician’s order.  It is not unusual to have a copay.  Contact your insurance carrier or your policy to determine your benefits.

Medicare (Based on Medicare 2024 Official Handbook – see Section 2 page 48)

Physical therapy services
Medicare covers evaluation and treatment for injuries and diseases that change your ability to function, or to improve or maintain current function or slow decline, when your doctor or other health care provider, including a nurse practitioner, clinical nurse specialist or physician assistant certifies you need it. You pay 20% of the Medicare-approved amount. The Part Bdeductible applies.

Occupational therapy services
Medicare covers medically necessary therapy to help you perform activities of daily living (like dressing or bathing). This therapy helps to improve or maintain current capabilities or slow decline when your doctor or other health care provider certifies you need it. You pay 20% of the Medicare-approved amount. The Part B deductible applies.

Speech-language pathology services
Medicare covers medically necessary evaluation and treatment to regain and strengthen speech and language skills. This includes cognitive and swallowing skills, or to improve or maintain current function or slow decline, when your doctor or other health care provider certifies you need it. You pay 20% of the Medicare-approved amount. The Part B deductible applies.

Stroke Caregiver Connection…Because you care!

When can a Stroke Survivor drive?

When it came to driving, Rick was a “rebellious teen”. The return to driving is a big step that not only affects your loved one and you, but also everyone sharing the road. He felt that he had been driving for years and now this vital part of his independence was gone. The location of the stroke and the subsequent recovery is a determining factor on their ability to drive again. This may be an ongoing argument, and you need to remain strong.

During inpatient therapy and for about six months after, Rick understood he was not healthy enough to drive. The impairment of his reflexes, decision making, coordination and memory was acute. With each improvement, we had hoped that he would be back to 100 percent. Unfortunately, he was not, and adaptations had to be made. He was determined to drive as soon as possible. He thought he was ready long before I felt he was. Stand firm when you hear:

• I feel so much better. I can run to the store for you.

• You have been doing so much. Let me run some errands.

• There are guys at rehab that drive themselves and they are in worse shape.

• I can drive. How can I get better if you never let me try? You are so overprotective.

• To others - She won’t let me drive even though I can with no problems.

• Where are the keys? I just need to run out for a minute.

• I am not an invalid. I can drive.

Being his caregiver was tiresome, the constant battle over driving, I felt like the bad guy. There were times when I wanted to throw the keys at him and let him go because his behavior exhausted me. But I didn’t. I had a responsibility to Rick and others to keep them safe. Remember, saying no is the right choice, but as with the teen, they are relentless.

How to determine they are ready to drive

For the caregiver, this is one of the hardest determinations I would make. We had been through a very difficult life change, and I was overprotective. With Rick, we did not know the cause of the stroke, and therefore, did not know if another stroke could or would happen. I needed to rely on several resources in making this decision, such as our healthcare team and family.

Many stroke survivors return to driving with no type of formal safety assessment. An on-road driving test is the most thorough way to gauge a driver’s ability. The test takes about forty-five minutes and involves driving with a trained evaluator or driving on a computer simulator. Driving provides a sense of independence and freedom, but safety takes on greater importance poststroke.

One of the best resources for driving after a stroke was the stroke.org site. For more information, please visit your state’s department of motor vehicle website.

At the nine-month mark poststroke and many requests from Rick to drive, I started to reintroduce driving. His physician recommended a slow start, and he was not allowed to drive alone, so we did things in steps like how we taught our teens to drive.

Step 1: Practice in an empty parking lot.

The most arduous tasks are starting and stopping the car both easily and then abruptly. The major concern was reaction time behind the wheel.

Step 2: Set guidelines for driving.

Initially, only during the day and only during low traffic times. We live in a neighborhood with children and have a responsibility to keep them safe.

He had to demonstrate good reaction time before being allowed on the roads.

The physical therapist had approved that he was ready to drive before we drove on the road.

Step 3: Practice driving to places that are very familiar.

We practiced driving to church, the store and to our friend’s house. When practicing, I recommend that only you and your spouse are in the car with no distractions (no radio or conversation at first, as well).

Step 4: Practice driving to places that require more thought and directions to get to the location.

Warning: Your loved one will likely get lost. Be patient and see what they can do before you jump in. We had a twenty-minute trip that took an hour at first, but we arrived safely.

Step 5: Once approved to drive alone by the physician and/or by meeting your state’s driving requirements.

Start with small trips to well-known places alone. Rick stayed within a five mile radius from home and there were no highways.

A key component is communication. Rick needed to always have his phone with him and to call when he arrived and then when he left to come back home. I found he was ready to drive long before I was ready to hand over the keys.

Finally, letting go:

Rick has been driving independently for some time without issues. During this time, we both learned a few tips to ensure safe driving. Rick has been driving independently for some time without issues. During this time, we both learned a few tips to ensure safe driving.

1. Assess fatigue level prior to operating a vehicle.

2. Signs of fatigue for Rick are slow or slurred speech, difficulty finding words or difficulty walking. He does not always recognize fatigue and will want to continue to drive. This remains my ongoing role.

3. After any outing or social event lasting over three hours, Rick would not drive and agreed to be the passenger.

4. Have a plan before you leave the house.

5. We determine how long he will drive and when I will be the driver.

6. We continued with the code word “Albert Einstein” to alert me when he was tired and needed to go home.

7. I drive when we are going to an unfamiliar location for the first time.

8. We always use a navigation device when driving. These are great verbal cues for Rick on where to go and early alerts on when a direction changes. I have become the navigator on trips.

·     

Stages of Caregiving: What to expect.

The caregiver is the sole survivor of the stroke and needs to take on both roles in the relationship. Most are familiar with the stages of grief identified by Kubler-Ross, denial, anger, bargaining, depression, and acceptance. The grief felt is the loss of your planned future and your loved ones’ abilities. Each phase is challenging, but part of the road to recovery.

The stages I experienced as caregiver were confusion, fear/anger, loneliness, depression, and realization. During the initial weeks in the hospital, I felt confusion and fear based on that day’s challenges or triumphs. In time, I realized that the goal is to identify where you are and to embrace that stage.

What are the stages of the caregivers journey?

Confusion:

Confusion is the initial phase for the caregiver.  I was confused and unclear of the extent of the stroke and what the potential outcome could be. Each day is a rollercoaster of emotions, anger, fear, exhaustion. I was overwhelmed but wanting answers. Most of the answers were of the “wait and see” variety from the health professionals and the “God only gives you what you can handle” or “I know someone who had a terrible stroke and is better than before” variety from well-meaning friends and family. But often, all you hear is “Blah, Blah, Blah.”

As a nurse, I really didn’t expect to be confused. I knew the aspects of the medical issues related to a stroke, but not the response I would have as a spouse. My mind raced with all my nursing knowledge, nursing friends shared advice and the dreaded internet of information. As a take-charge type, I became frustrated because all I could do was sit back and watch our life fall apart. 

Fear and Anger

Fear and anger was the stage when I understood what had happened, but I now begin to worry and think “How can I handle this?” During this phase, the caregiver handles every aspect of their loved one’s life, making all the decisions alone. All the “what ifs” will rear their ugly heads. What if he dies? What if he survives? And how can I ever live without this person?

Once I passed through the confusion phase and had some idea what I was dealing with, my nursing background and the world of “what ifs’” entered the picture. I still didn’t know where we would be in a year poststroke, but I knew enough that it would not be a straightforward journey for either of us.nd what could be improved upon.

Loneliness and Depression

I had always thought of loneliness as a sadness due to lack of friends or company. So, how could I experience loneliness when surrounded by family, friends, and healthcare providers for many weeks and now home with Rick daily.  I learned being lonely, while never alone, is a unique type of loneliness. The entire world is flying past you with the typical day-to-day issues you thought were so important until life priorities changed. No longer did I care if he remembered a task that I had asked him to do a million times, or that he was not as attentive as other spouses seemed to be. He was my world, and I was losing him. 

            When  asked how I was doing, I was at a loss for words. I felt I had no right to complain or feel sorry for myself. He had the stroke, and I was healthy. The answer would always be: “I’m good, just a little tired. I just need to count my blessings.”  With this response, I thought that I was protecting myself from dealing with my feelings, but I was pushing others away and closing doors of support.  Everyone deals with this stage differently, but I think the loneliness while never alone is universal when a caregiver.

Realization

More and more days were hopeful for me and less were filled with depression and loneliness, this is when I finally came to terms with the life we will now have. The stroke was devastating for both of us and after a year, Rick’s recovery had plateaued.  Over a period of about three months, we both became aware that his physical and cognitive limitations were not improving and that we were beginning to adapt our lives around those.  The realization of what our future would hold happened for me at the one year follow-up medical appointment.

When the doctor shared, “He is progressing slowly, but he is moving in the right direction. I can see so much improvement from last year.” The confirmation from a medical professional that we were no longer taking steps backward provided comfort to us.  We understood that improvements could happen beyond this point, but the likelihood that they would was low.  The effects of the stroke and the changes in his overall health still needed to be addressed, but I no longer felt hopeless. I started to believe that we could work through any upcoming challenges.

For more information on the caregiver stages and tips for how to handle. Please purchase “Stroke and the Spouse” as well as provide your email and receive the weekly newsletter.

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Emotional Grief and Exhaustion

The past few months, I have been visiting caregivers at the hospital. Their loved one had a stroke within that week. They are trying to navigate this new life, exhausted and fearful.

I have been in your position and know the fear. Your loved one is different, and your relationship will change. Like you, I am grateful that my husband survived but that doesn’t stop the pain of losing the essence of someone you love. You can’t move forward and try as you might, you can’t move back.

The old ways of communicating with your loved one no longer work. Trust me, I tried this past week, knowing ahead of time that he could not fully participate but hoping that this time I could get thru and bring him back. He listens and shared he would try harder to connect and care but it is no longer something that he can do post stroke. We both cried knowing the truth.

As a care partner, what can you do? Even though you feel like you are ready to throw in the towel, you don’t and you can’t . That person that you loved pre stroke is still there, different but still loved and wants to show you love.

What helped…

Emotional and behavioral changes are a common effect of stroke. The medical term for lack of emotion is APATHY. Giving this effect a name doesn’t make it easier to deal with but at least you can understand what you are up against. Apathy is a decrease in goal directed activity, in caretaker terms - they no longer participate or care about everyday life. 1 in 3 stroke survivors are impacted by apathy. After some research and personal trials, the below list can help…

• Per the American Stroke Association, Some survivors just don’t seem to care about anything. The best response to apathy is activity. Give your loved one a choice of what to do for the day. (Staying in bed usually shouldn’t be an option.)

  • This is very true and helpful. If allowed, Rick would stay home and read all day. What is starting to help me is…

    • Weekly list of items that I need him to complete

    • Not asking what he wants to do but rather offering choices of what I would like to do. For example: Today, would you like to see a movie or visit a friend? This allows some sense of choice but also allows you to participate in life.

    • Set a weekly activity that he likes - for my husband playing golf. Again, he will not initiate a game but if asked he will agree.

• Letting go of the past as well as expectations for the future. I wanted him to participate and be back to normal more than he did. If he doesn’t want to participate, I won’t. We have always been “Rick and Lana” and now it is “Lana” Start to build a life for yourself.

  • I struggle with this daily. I enjoy doing things together but am realizing that he no longer processes our time together as before. Does he enjoy spending time together? Yes, but it is no longer central to his well being.

    • Work with the therapist to help you to work thru the loss of your relationship grief. Each one of us is different and what works for one may not for another. They are professionals and have so many tools to assist you.

    • Find activities that you can do without your loved one. Rick no longer enjoys eating out due to taste issues, I have a couple of dinner clubs with friends. I love to work in the yard and landscape, he likes the yard to look good but derives no pleasure in the process, I took a landscaping class and joined the local Botanical Garden.

    • Remember that before the stroke, you were not always the happy couple doing things together and you had different interest. YOU do not need to feel guilty living life when they would prefer to stay home. Many of friends, experience the same issues and their loved one has not had a stroke.

Dealing with all the “What If’s”

On Monday, I made my usual visits to families of recent Stroke Patients.  It still amazes me the number of individuals that experienced a stroke daily.  Just to give you an idea, I visited with 30 family members and patients this week.  As I walked the halls and listened to their concerns, it brought back all those feelings and fears I had in our first few days and weeks.  These families are still in shock but have the same concern we all had – What If…

Once I passed through the confusion phase and had some idea what I was dealing with, my nursing background and the world of “what ifs’” entered the picture. I still didn’t know where we would be in a year poststroke, but I knew enough that it would not be a straightforward journey for either of us. I outlined some fears that I experienced below:

• Would Rick recover? How much would he recover? What if he dies? How much should I share with him? Does he understand what is happening? What will our marriage look like?

• How can I prepare the children? What if they lose their dad? How will their relationship with Rick change? Do they feel they need to care for us now? How will this affect their families?

• Can we handle this financially? How much will this cost? Do I have enough coverage? Will I need to take a leave from work or retire to care for Rick? Am I equipped to make all the family financial decisions?

• What is my new role? Am I ready to be the caregiver? Can I take this on without anger and frustration? Why is this happening? Will Rick and I ever have an intimate relationship, physically and emotionally again?

What worked for me…

I needed to step back and take a breather. Recovery is not a sprint, but a marathon. This is a critical time. While Rick was being cared for, I tried to sit down either alone or with a friend and discuss all the concerns that I had and talk through a plan. I let life manage me versus managing the life challenges ahead. I needed to let friends into my pain. They wanted to help but were unclear how. The biggest help was to have them help me wrap my head around all the possibilities.

• Give fear a name.

• When I named and journaled what would happen, if what I was concerned with became reality, it took away some of the power it held over me.

• I had to get a different perspective on life and some options I had not considered. When I spoke with a friend about not being able to do everything by myself, she asked me to share what items I could have others do. That opened my eyes to new possibilities.

• I worried about how my children were handling this life change. It was important to learn to view your children as strong independent adults with lives that they have developed with their spouse and children. My role was not to protect them from life, but to be a role model on how to deal with life events. That is hard because that also meant showing my tears, my vulnerability and that I was hurting.

• Discover the known.

• Meeting with my financial advisor and the financial office at the hospital to talk through every scenario and learn what was available.

• Looking at my work benefits available to me, as well, not only financial but support groups, such as EAP.

• Meet with the primary physicians. They do not have a crystal ball but can discuss what they have seen poststroke and what they feel are the potential issues that we could encounter.

• Give your fears a priority number.

• Not every fear is critical or needs resolution immediately. My mind was swimming with so many “what if’s” that it can be paralyzing.

• Tips that helped me was to mark my fears as follows:

• “A” for those that need to be addressed within the week and are real. Those are the medical and financial issues.

• “B” for those that could happen in the next six months. Those would be recovery and lifestyle changes.

• “C” for those that have no basis. Until they move to A or B, write them in your journal and place them on a shelf.

The above is an excerpt from “Stroke and the Spouse” – The definitive guide for caregivers. For more information on what worked for us, check out “Stroke and the Spouse” available on Amazon or follow the code below to purchase.

Stroke Caregiver Connection…Because you care! 

Doing it all for the Stroke Survivor is Exhausting

We just returned from visiting family over the holidays and although we had a great time and Rick did well, the reality is that as the spouse and caregiver, we need to do so much more than pre stroke.  The planning, the packing, the lugging of bags, making sure activities are safe, allowing for down time, and looking the other way or being open to their attempts to recapture what they used to be able to do.

One of the caregivers that I recently spoke with shared “Some days, I feel like all I do is FETCH, CARRY, and DO.”   I believe that is a normal emotion and it is not wrong to feel that way.  The key is how do we handle the stress and change without becoming bitter or angry or start to blame ourselves or our loved ones for what has occurred.

During this last trip, I had an “AHA” moment.  Prior to leaving for the airport, I had asked Rick to be responsible for his carryon bag, I had enough to think about.  As we pulled up to the airport, we realized that he had left it on the kitchen table.  My first instinct was to blame me for not taking care of this, but I stopped.  It was not my fault, and the world did not stop spinning due to this.  Was it an inconvenience – yes- but overall was easily resolved.  My son brought the bag on his flight.

What did I learn…

·         Life does not stop if things don’t go as planned – there is always a Plan B in life

·         If the stroke survivor is never expected to take care of themselves – they won’t

·         The caregiver deserves a life and a break from responsibility

·         If material things are left behind, they can be purchased or shipped to wherever you are at.

Now, how do we take that “AHA” moment and incorporate it into our daily lives.  That is the million-dollar question. A few strategies that I have tried and seem to be helping me to let go of my need to do it all are…

·         Stop and think before I automatically “DO.”  Is this something that “I” need to do?  Is this something that the “SS” can do for themselves? 

·         Perfection is not attainable nor is it healthy.  What is really needed to be DONE to keep the SS safe, happy and cared for.

·         Let go of what “use to be” Those days are gone and look at what you are dealing with.

·         It is ok to just not do it all, reassess needs or ask others for help.

For more information on what worked for us, check out “Stroke and the Spouse” available on Amazon or follow the code below to purchase.

Stroke Caregiver Connection…Because you care! 

Food Challenges for the Stroke Survivor

Thanksgiving is not only about gratitude but a holiday that centers around food.  But what if you have a loved one with food and diet challenges, how do you navigate not only Thanksgiving but also daily meal preparation.  In our home, the challenge is that ‘nothing tastes the way that it uses to or just tastes bad” So how do we navigate this issue, this week, let’s explore some of the most common food and diet issues that you may encounter and what others have tried and has worked for them.

Common food challenges post stroke for the survivor.

1.        Eating difficulties such as unable to swallow or inability to feed themselves.

2.      Diet changes that need to be made but difficult to institute

3.      Loss of appetite, no energy or desire to eat

The above list is common concerns that have been either experienced by me or shared with me.  Each situation is different and the issues you encounter may be different.  On my Facebook page “Stroke and the Spouse Caregiver”, many of the members share challenges and solutions that have helped.  Put your concern on the site and you will be pleased with the support provided.

Eating Difficulties

If your loved one has trouble swallowing such as choking, gagging while eating or coughing when eating, a few tips that might help.

• Stick to soft foods - If you want to try tougher foods, cut them into small pieces or chop them in a blender to make them easier to chew.

• Thicken fluids – Although fluids are critical to prevent dehydration, water and other fluids can go down the wrong pipe. Talk with your MD but adding tapioca, matzo meal, cornstarch, banana or potato flakes can thicken the fluid.

• See a speech therapist – The therapist can provide exercises to strengthen tongue and mouth muscles, recommend alternatives and medications that can help.

Another difficulty experienced is problems using utensils.  When Rick first came home this was an issue but post PT and OT, this did improve.  A stroke can weaken muscles which makes using knives and forks harder. A few tips that might help.

• Flatware with larger and thicker handles. 

• Plate guards that help the SS to scoop the food against a wall on the plate while eating with one hand

• Rubberized pads- so that the plate or cup does not move.

• Many of these items can be specially ordered but I found that going to the baby/children’s section has many items that are helpful and much cheaper.

Implementing diet changes

This was so hard in my home.  The recommendation was for a Mediterranean Diet.  I bought cookbooks and looked online.  After spending hours prepping meals, he did not like the food and would not eat.  Ideally, making a diet change should be much easier but my experience with SS is that it is not.  What I learned …

• Make one or two changes at a time.  Remove food they should not have and add a food choice on the new diet.

• Avoid trying new recipes, look at the recipes that you both have enjoyed and then adapt to the new diet needs.

• Make breakfast the main meal of the day.  By evening they tend to not want to eat as much.  Make the last meal easier, a sandwich or cereal.

• Buy pre-cut, pre-washed fruits and veggies. It can make prepping and eating these nutritious foods a breeze.

• Ask friends and family members to make dishes that you can freeze and reheat on those days when you’re too pooped to cook.

Loss of appetite, no energy or desire to eat

Post stroke, the SS may not feel as hungry as before.  Their activity level has decreased, and they may not feel like eating.  The part of your brain damaged by the stroke can affect your sense of taste and smell.  To increase their appetite, I tried the following.

• Choose foods with strong flavors. Look for options that are low in saturated fat and salt, like citrus fruits, herbs, and spices.

• Select colorful foods like salmon, carrots, and dark green veggies that might look more appetizing. These foods also are full of heart-healthy nutrients that will lower your risk for another stroke.

• Eat high-calorie foods in your meal first. If you’re truly not hungry, also try a liquid supplement for added energy and nutrients.

• Exercise lightly, such as walking, to ramp up your appetite.

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Next week, we will discuss food challenges for the caregiver.  Eating alone, making meals that are not eaten, and eating out.

For more information on what worked for us, check out “Stroke and the Spouse” available on Amazon or follow the code below to purchase.

Stroke Caregiver Connection…Because you care!

What is life after stroke really like for the caregiver?

Life after a stroke is different than what we plan. The dreams of pre-stroke need to reimagine for both the stroke survivor and the caregiver. Visiting recent stroke patients and their families, one some of the primary questions are “How is life for you and your spouse post stroke? What is your relationship like? How did you adjust to the new roles? How do you stay upbeat and positive for the stroke survivor? Am I always going to be a burden? and will it get better?

“Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” – Glenn Schweitzer

This week, I would like to share some thoughts on each of the above questions. This is what helped me and what I share with stroke survivors and caregivers. You will find your way, but it helps to see how others handled the change.

How is life for you and your spouse post stroke?

It has changed in many ways. Post stroke, I have become the primary decision maker and alone making decisions on our life together. Although, he provides input, due to his limitations he really leaves this all to me. Initially, I could only see what we have lost versus what we still have. This takes time and patience for both.

What I know now, post stroke, is that life can change in a minute.

What is your relationship like?

We have been married over 40 years and like all relationships we have good times and bad. Post stroke, it is less of a partnership and at times I feel like I need to walk on eggshells as to not cause frustration or anger from my spouse.

They way that you handle conflict, emotions, and life decisions post stroke changes. Conflict and normal differences take on a new meaning. The survivor wants to be the person they use to be but that is out of their control, and they can get angry at you. I now pick my words, comments and discussion with much more care as to not upset my spouse. This takes a toll on the caregiver as you really have no one in your home that you can talk to or just vent without hearing “I am sorry I am a burden.” They are not a burden but hearing that pulls at the heart strings.

How did you adjust to the new roles?

Many of you may remember every time Charlie Brown would go to kick the ball and Lucy pulled it away. That is how I felt most days, I wanted so badly to hold on to the past that I would set myself up for failure. Asking him to do or be a certain way when he was not capable.

This is still an ongoing process but over time I have learned a few tricks. The task that he was able to do, I had to learn. I joke that google is my second husband. I watch videos on different task, I have to ask others for help and lastly, I needed to realize that I did not have to do 100% and that he still could do many things.

Taking on the new role will not be the same as the way your survivor would have done it or you may end up doing it totally wrong but that is O patience and yK. Just do your best.

How do you stay upbeat and positive for the stroke survivor?

Don’t fake being upbeat or positive when you just can’t. Being real with the survivor is critical. My spouse knows when I am faking it and he then feels more stress that he is being an additional burden. Share, Share and share again with the survivor. My spouse has appathy and doesn’t respond to my concerns but just saying them outloud helps.

No relationship is upbeat and positive whether pre or post stroke - so don’t give yourself unrealistic expectations. What does help us is laughter. We don’t take the stroke limitations as a death sentence but laugh when things go wrong, or he says something inappropriate.

From survivors. Am I always going to be a burden?

No, you are not a burden but just as you need patience, support and understanding from us we also need that from you. We get that you are angry or frustrated with your limitations but saying “I’m sorry I took that out on you” or “Thanks for loving me” and” I love you” Those three phrases go a long way with your loved one and takes the “burden” away.

Will it get better?

You will adjust and find a new journey and relationship post stroke. Is it better or worse really depends on the extent of damage and the desire/ability of both to work on the relationship. For us, I find that we appreciate everyday activities and time more than pre. We know that life can change in a blink and that has made us more loving and caring of each other. The survivors’ expressions of love will be different, and you will need to adjust. Not able to talk, express or show displays of affection as they once did is a barrier for a relationship.

During support group time share your frustrations and you will be happy with the support and ideas that come forth.

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For more information on what worked for us, check out “Stroke and the Spouse” available on Amazon or follow the code below to purchase.

Stroke Caregiver Connection…Because you care!

Order “Stroke and the Spouse” to learn more.

Who cares for the Caregiver?

When my husband had a stroke and I became his care partner, I was not really prepared that this role would be my new normal forever. Being a caregiver to a loved one is not an obligation or a burden because you love this individual. But that doesn’t mean that this doesn’t feel difficult, thankless or a lonely job. After time, the care partner and the stroke survivor begin to have a rhythm to their day along with good days and bad days. The new normal is focused on the needs of the Stroke Survivor and not the caregiver. This leads me to the question: Who cares for the caregiver when he/she is overwhelmed, tired, needs emotional support or just a day that was just like a pre-stroke day?

“Always say “YES” to the present moment…. Surrender to what is …. Say “YES” to life-and see how life starts suddenly to start working for you rather than against you.”

-Eckhart Tolle

Do you feel that when it “rains it pours”. I know that I do. Everyone and everything come out of the woodwork needing you to provide a level of care. We are not only a caregiver/Care Partner to your loved one, but we are also an employee, Mom/Dad, Sister/Brother, Son/Daughter and friend. It seems that when we were cast into the caregiver role with our loved one, everyday life and stresses continues on.

What helped me?

1. Coming to terms with our situation, it is not acute but rather a chronic condition that waxes and wanes.

2. Letting go and letting them. At support group, we frequently discuss how we tend to be overprotective of the stroke survivor. As my son shared “How will he learn to walk if you never let him fall”. I am not recommending that we let them fall and get hurt but rather let them try. Give them responsibilities and remember it may not be up to your standards, but it gives them more independence and a break.

3. Talk and cry with those that “get it.” Find a support group. Friends and family are wonderful but unless they have experienced this it is hard for them to understand.

4. Let go of trying to explain “I know he looks great, but his changes are more emotional and mental than physical” Just answer “Thanks” and move on. Explaining is exhausting and doesn’t really improve your situation.

5. Laugh together at the changes but also cry when you need to. I frequently expect that my husband will be able to respond to the emotional feelings that I am experiencing in life but that part of the brain no longer allows him to do that. Prior to the stroke, he struggled with this but honestly his communication was heaven compared to now.

6. Listen to the wisdom of others. A wonderful woman who has been in a caregiver role for 17 years shared that when I get frustrated and feel alone. I look at our wedding picture and remember the happiness of that day and all the happy memories pre stroke. She then picks one thing post stroke to hold as a memory.

7. Lastly, do not feel that you need to apologize for your loved one. My husband makes inappropriate comments, has no filter and is unable to read a room. I want to protect him, so I try to explain or become hurt when someone brings it to my attention and feel that I need to fix it. I CAN’T fix this and am working very hard to let go. Those that love you both understand and will laugh at comments.

For more information on what worked for us, check out “Stroke and the Spouse” available on Amazon or follow the code below to purchase.

Stroke Caregiver Connection…Because you care!

Order “Stroke and the Spouse” to learn more.

Step Away and take time for YOU!

This past month, I stepped away for me and my husband. I could tell that I was tired and had started to be more passive-aggressive in my caregiving. It was hard for me to see the good or progress made each day by both of us. With my book and ministry, although it was doing well, I felt that I was not doing enough for those in need of caregiving support.

As a caregiver, we can feel that we need to save the world, cure their hurts and make life better for others. That is a myth that we take on. Reality is we really can only impact us. I know, this was a shock to me as well. So how do you take that time, when you can’t seem to find any now?

Steps to take for you…

1. Start with only 15 minutes each morning. Find a spot that makes you happy, a favorite chair, outside or a quiet spot. Identify ONE thing that you would like to do differently, better or not at all. Replace that ONE thing today with a positive self-affirming action. Write it down.

2. At the end of the week, set aside 30 minutes to look at your above list. What worked and what didn’t? Write THREE items that you did for you and the outcome.

3. At the end of the month, set aside an hour and complete #2 for the month. Ask yourself: how did it feel? Was anyone neglected from you taking time for you?

4. Save all of your notes, at year end look back at what you did for you and the changes it has allowed in your life.

You did it…

Share your success with others on my website. What you learned and how it changed not only you but your relationship with your loved one and also family and friends.

For more information on what worked for us, check out “Stroke and the Spouse” available on Amazon or follow the code below to purchase.

Stroke Caregiver Connection…Because you care!

Order “Stroke and the Spouse” to learn more.