Mar 26
melvashrum
melvashrum , Posted on SUPPORT NETWORK Blog

Daughter of a stroke survivor

My mother suffered a massive left-sided stroke about 20 days ago. She had a moderate stroke in 2005, a couple of TIAs serious enough to go to the hospital for observation, and a small stroke in 2008. These strokes did not prepare me for the devastating effects of a massive stroke.  Although I was familiar with the types of physical limitations a stroke can cause, mom's  aphasia came as a complete surprise. The ICU team didn't expect mom to live. She proved them wrong!  They gave no hope that she would be able to achieve much use of her body physically. She is proving them wrong again!  Praise God. I am very proud of how hard mom is working. She has never been a ball of fire, nor particularly tough; however, her recovery attitude is awesome. It breaks my heart to see her struggle to communicate. She has both types of aphasia. She does not respond appropriately to questions--she nods for no and shakes her head for yes--she is also having a hard time understanding what people are saying to her. I thought her mind was gone, but then I started reading about aphasia and learned that the inability to communicate has nothing to do with intelligence. This spurred me to begin learning as much about strokes, their effects and rehabilitation as possible. There's a lot of conflicts with two of my four brothers (I'm the only girl) for which I hope to find support in the forums. 
8 Comments
  • nova3828
    nova3828,
    Sorry to hear you don't have the support you need. I still have that problem from tie to time. No telling when it will pop up. I was one of the lucky ones, it mainly effected the cognitive part of my brain and not much as far as physically.. I about went crazy the first few months after my stroke, It i terrible because you know what you want to say and the more frustrated you get the harder to get anything sensible out. That is much better now but I still run into it a few times a day. I hope your mother continues to improve, it is possible, Sometimes you can learn to 'think around' it. Hopefully she can do so, just try not to pressure her too much. I do understand being stuck with providing care when other family members are too involved with doing their own thing to be of much help. Unfortunately that isn't likel to get much better.. I just thought 'I would respnd because I have been on both sides of this issue as a stroke survivor and as a caregiver..
  • Suxieq
    Suxieq,
    Dear Caregiver: First, my prayers are with you during these difficult times. However, know that it will get better, especially if she is excelling as much as you say she is. Now is a time for MUCH patience. Regarding caregiving assistance, reach out to local organizations for small grants, etc. to assist you in a bit of relief. For example, locally we have a program called Caregivers Resource Center and they offer some type of assistance, it may be small but some is better than none. There are procedures and a process that also go along with this services. Second, be sure to take at least three copies of your mother's ID, SS Card, health insurance cards and place one copy in the trunk of your car for emergencies. These documents are the first the hospital and doctors ask for when at a doctor's appointment and/or hospitalization. Don't forget to make that all important list of medications she's taking. Lastly, most doctors and hospitals will give you give you a "much" lower prognosis due to liability, etc. My older sister suffered a stroke about 8 months ago and I assisted her daughters with numerous issues, etc. It does get better and don't get too overwhelmed with educating yourself. Continue to FIGHT and ADVOCATE for her even if it does upset family and/or physicians. Love, :-)
  • tomscolor
    tomscolor,
    stay positive and do not lose hope she really needs hope.tenderness and kindness ..she will get better with hard work and positivity
  • beth64
    beth64,
    Hi Sorry to hear about your Mom. My husband had a left sided stroke and has aphasia. We use drawing, singing and favorite phrases..like commercial jingles even. Just tell your mom u love her, take her time and tell her you know it is frustrating. Being a cargiver can be a lonely and tiring role. One day at a time and take a break .. don't feel guilty. Use your neighbors friends, church members, Meals on wheels . You are a wonderful daughter. People don't know how to react, what to say and often are in shock and denial when this happens in a family. I know. All the best God bless u and your family.
  • AHA/ASA Sarah Ismail
    AHA/ASA Sarah Ismail,
    Hi Melvashrum. Here is a link to a local support group finder. I hope you will be able to find one near you. If you want to speak to someone about your experience or even find local resources within your community I would encourage you to call our Warmline at 1-888-4 STROKE.
  • Kathleen T
    Kathleen T,
    My mom had a stroke also and at that time I really knew very little about it. I hope those members of your family who are able will step up and help you with her care. You may need to ask them to do specific things as they may not realize what is involved and what help is needed. I'm assuming you will be the main caregiver. Beth64 is right. You will need to work at making sure you get breaks. It's easy to exhaust yourself mentally and physically. Reach out to family and friends to get the help you need. I have a friend who is a social worker who helped me find a lot of resources for specific issues. The hospital your mom was in will have a social worker who will be able to help you. He or should have made sure before your mom left the hospital that you had a list of these, but perhaps you may need to ask. Hang in there. You will learn to deal with many things and will learn to ask for the help you need. A support group will really help. God bless.
  • melvashrum
    melvashrum,
    Thank you all for your support and suggestions. I do have a wonderful family, with plenty of stepping-up. It more of a power struggle with the oldest and being judged by the youngest. My mom and I have always been very close, and she has spent years telling me how she wants things done. My sister-in-law can vouch that I am following my mom's wishes. I have her Health Care POA, but she would never fill out a Durable POA. She thought all she had to do was tell me. Well, that doesn't work with the government or insurance agencies. My eldest brother thinks he should be in charge, but that's not what mom wanted. I'm on all her bank accounts, so I can keep her bills paid. I guess I'm just rambling away here! Thank you again for your support.
  • shelscarp
    shelscarp,
    Hi Melvashrum, My mom (92) was in great shape when she had an emergency hernia surgery Jan 17. She went to rehab and within a week was back in the hospital with fluid on her lung. She was in good spirits joking and dancing with everyone there. After a week of trying to reduce her BP she then had a stroke in the hospital in front of me on Feb 6. She didn't open her eyes, could barely walk and didn't talk at all. The Dr did not diagnose this until the next day, over 24 hours later. I was told that if they knew sooner they could have treated her with clot busting med. I was so disgusted as I told everyone that she slumped over in front of me and she stopped functioning. I was staying in the hospital with her already because I was concerned about the care. Now I was frightened to leave her alone at all. The situation continued to be awful as she went to rehab with a UTI. The rehab facility kept threatening to sent her somewhere else due to her lack of cooperation. Once the UTI was found she began to improve. It is now about 6 weeks past her stroke and she has been able to go back to her apartment and finally stays alone. She has required a tremendous amount of sleep, especially at the beginning. I still go every day to make sure she is eating properly, but she is doing very well and I didn't think this was possible a month ago. I know how frightening this is but I would encourage you to give it a little time.
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