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CARENOTES / Past Carenotes / Discussion Forum

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 04/24/08

I am quite stressed with caregiving duties which only just started. I am an emotional person to begin with - my family has abandoned me so to speak and stopped calling, friends are sick of the situation too. Hubbie has severe aphasia, however he is still very physical. He is able to eat, shower and dress, etc. He wants to talk so badly and is getting nowhere with his speech pathologists. In fact they say stop - he reached a plateau!!! I want so much for him to speak. Watching him 24/7 breaks my heart and I cry a lot.

I'm going to a caregivers support meeting next week - it can only help. I just wish the out-of-town family would understand and come and help me more than the once they have done so far. I feel very isolated. I can go out to a store and leave him - but when I return it's the same situation. We have no children. Please don't suggest the County Dept of Aging - they have not been one bit of help - he's only 59 years old.

View Comments

Name: weezer
Location: NH
Email: caregivers@metrocast.net
Date: 04/24/2008
Time: 08:51 AM

Comments

MAKE SURE YOU GO TO THAT CAREGIVER SUPPORT GROUP MEETING!!! It will be your lifeline! You will learn you are NOT alone and learn many things from experienced caregivers. And don't forget to take care of yourself!!!


Name:
Location:
Email:
Date: 04/24/2008
Time: 08:58 AM

Comments

Is it possible for your husband (and you) to learn sign language?


Name: Judy
Location: New Hampshire
Email: japrd13@aol.com
Date: 04/24/2008
Time: 08:59 AM

Comments

My husband was 55 when he suffered his stroke. You are fortunate that he can do so much for himself. I don't know how long ago this happened but my husband was able to get help by using a computer. He uses C-Speak. Ask your therapist to check into it. My husband can not read, write or speak. Over the years the help of the computer has been fantastic. We attend 2 support groups monthly and he attends one on his own every Friday. They are wonderful They've really helped us both. He can "talk" with people who understand and I can vent with other caregivers. They are a great source of info. If you'd like more info or would like to chat, please write back. I know how frustrating it can be! Also, check out the NAA website. They will give you info and are a good starting point


Name:
Location:
Email:
Date: 04/24/2008
Time: 09:16 AM

Comments

I am a Speech Pathologist who is very aware of what severe aphasia means to the person with the problem and his/her care provider. Is there any way your SLP could organize a group of other people with degrees of aphasia, provide a little drill work and give opportunity for caregivers to meet and talk, and aphasics to meet together and learn to communicate, whatever it takes? I think that both of you will feel better when you realize that you are not alone. SLP in Des Moines


Name: dimi
Location: fl
Email: tmfic@aol.com
Date: 04/24/2008
Time: 09:41 AM

Comments

My husband wss 58 when he had his stroke. I was able to get some respite help from the alzheimer's society because he had some memory loss.


Name: Phyllis Boynton
Location: Connecicut
Email: Pfboynton@aol.com
Date: 04/24/2008
Time: 09:49 AM

Comments

Hello,  Besides attending the Caregiver Support Group, I have two other suggestions. It is a daunting task, finding resources for disabled adults under age 65, as you have found out all too well. I am one of a group of professional Geriatric Care Managers nationally, and many of us serve the under-65 disabled also. Check out our National Association web site at caremanager.org to find out more and access a list of Care Managers in your area. Also, is your husband a Veteran with a general or honorable discharge? He (and you!) may be able to get help through the Veterans Administration. In your phone book you should be able to find your local VA Representative who serves your town to contact - or Google the VA website and find your local VA Rep that way. Or call your nearest VA Hospital and ask to be connected to a Social Worker or Nurse Case Manager there. Best wishes to you - don't give up your search for help. Sincerely, Phyllis F. Boynton, RN,GCM,CCM,CLNC Geriatric Care Manager Milford, CT


Name: kenneth owens
Location: Newnan, Ga
Email: owenskd97@yahoo.com
Date: 04/24/2008
Time: 10:32 AM

Comments

I'm in almost the same position you are since my wife's stroke in 99, she has been unable to walk, talk, or otherwise care for herself. It is not unusual for family members to discover better things to do when our loved ones are struck down and basically abandon them. The best thing I can tell you is to get back together with the Dept of Aging for the social gatherings that they have during the course of the month. The interaction with people will help more than anything. Look in the paper and you will find several organizations that have get-togethers whether it's AARP, DOA or religious groups...This is for your mental health as well as his....KEN


Name: Marlene
Location: N Huntingdon, PA
Email: mjstabile@aol.com
Date: 04/24/2008
Time: 12:27 PM

Comments

My heart breaks for you. Unfortunately, I have no suggestions, but wish that I did. I wish I could ease the emotional pain for both of you, but can only send you heartfelt hope for peaceful, loving moments as you continue your journey together.


Name: mmuir
Location: New England
Email: mmuir@rcn.com
Date: 04/24/2008
Time: 01:56 PM

Comments

As much as it seems you are isolated - you are not alone - there are many people like us who are caregiving with no help from family members - connecting with others in the same situation can help relieve the feeling of isolating - the other thing that I find helps is to focus on what you have left to be grateful for - it give you energy to handle what you feel has been lost - I recommend keeping a daily log of the things that happen during each day that you are grateful for - and specnd time recalling them


Name: Twila Westphal
Location: Temple Tx
Email: txrose90@hotmail.com
Date: 04/24/2008
Time: 02:48 PM

Comments

I am in the same situation with my dad, we've found help thru a nearby university where grad students in speech pathology have worked w/him, the school also has an adult enrichment program in the summer for adult aphasics that we'll enroll in. I have also started taking him to senior dances at our local senior center..he can't dance cause he's wheelchair bound, but he enjoys watching & listening to music. It can be very isolating, so take time for yourself & go do some things you enjoy. We looked at a computer at the university that talks for you...if I were you I'd check into that--sometimes you can get them for free due to aphasia & it might really help. If you'd like to talk/vent feel free to e-mail back. God Bless, Twila Westphal


Name: SHERRY
Location: NJ
Email:
Date: 04/24/2008
Time: 05:06 PM

Comments

I sympathize with your plight; it can be very lonely and frustrating. The caregivers' support group should be helpful; they were invaluable to me in providing suggestions and emotional support. Is there an Interfaith Caregivers' organization in your area? If so, they could probably provide "friendly visitors" for your husband. Good luck!


Name: Sharon Contuzzi
Location: NJ
Email: scontuzzi@yahoo.com
Date: 04/24/2008
Time: 06:03 PM

Comments

My husband has moderate/severe aphasia as a result of a stroke 3 years ago. He was 59 at the time. Recently he has made exciting improvement in his ability to communicate. About 2 months ago, he began taking a drug called Parlodel and began medical acupuncture treatments. I can't say what is causing his speech to improve, but we will continue both treatments. Hang in there and keep exploring. Sharon


Name: Terri Corcoran
Location: Falls Church, VA
Email: tcorcoran53@verizon.net
Date: 04/24/2008
Time: 06:06 PM

Comments

Do you know about the Well Spouse Association (WSA)? Is that the support group you're going to? WSA is a national support group specifically for spousal caregivers - there are local support groups, online forums, and wonderful help and resources. Spousal caregiving has its own set of problems not addressed much in general caregiving groups, I've found. You can contact WSA at www.wellspouse.org. I'm sorry for your situation - I understand it well, as I am in a similar situation. WSA has been a lifesaver for me.


Name: Muriel
Location: Florida and Massachusetts
Email: murielgw@aol.com
Date: 04/25/2008
Time: 03:20 AM

Comments

I know what you are going through. My husband is 73 and suffered a stroke in February of 2007. He is also aphasic with apraxia and severe dementia. It is so frustrating for both of us not to be able to communicate, and he is unable to make meaningful gestures when trying to get a point across. He has receptive aphasia to some extent also I have a hard time with this and dissolve into tears of frustration. Your husband is so young - my heart goes out to you. I know how much you need time for yourself away from the situation - just to get away for more than a trip to the grocery store. I hope you can get some local caregiver suggestions from the people you meet at your support group. We have family (who are all busy with their own family and jobs)but can be called upon in an emergency. I cannot leave my husband alone. He is a fall risk as his right side is very weak, although he does walk on his own after being helped up. Incontinence is also a challenge in our situation. He is now in an Adult Day Care program (one day a week only)for the past 3 months and I find it helpful to have one day to myself to get appts. and errands taken care of and some time for myself knowing he's being well supervised. He isn't thrilled about being there, but it's a necessity for me. Like your husband, he has "plateaued" they say so no more therapy. I just heard from my husband's son that there is a new therapy/ procedure being tried at Beth Israel Hospital in Boston using music/ induction to help with speech training, and we might have my husband evaluated for that program when we return to Massachusetts in May. I will forward the info to you if you have an e-mail address.


Name: Russell Sessler
Location: New York
Email: russell@chaperonealert.com
Date: 04/28/2008
Time: 06:57 AM

Comments

Caregiving can be quite stressful at times. A Chaperone medical alert system may help you to relieve some stress for when you are out of the home. They offer emergency and nonemergency help. They call it in home care call support system. Whatever the needs are for additional assistance in his daily living activities, he can push a pendant button and a care specialist will speak to him over a two way voice unit to ask him what type of assistance is needed. Going outside to the mail box in icy weather, taking new medication, strange noises in the house, going up or down stairs, There are any number of uses the Chaperone medical alert can help with. The peace of mind the system provides the caregiver when they must go outside the home, in tremendous. Their website is www.chaperonealert.com 1-888-210-1515 I hope this information is helpful


Name: Donna
Location: Pa
Email: grousehillfarm@frontiernet.net
Date: 04/30/2008
Time: 09:05 AM

Comments

I understand how you feel, but at least I have a wonderful Husband to help me. My mother has a broken knee replacement and at 90 years old no Doctor will operate on mom and I guess I cannot be mad at them. See mom also has moderate to severe Alzheimer's. She had a cornea transplant and is also hard of hearing ,I know how your heart is breaking as I sometimes sit by her bed and cry. But I am so blessed that she is still with us. We both love mom and my husband will not put mom in a nursing home as the do not take good care of you. We moved 250 miles away from our relatives and mom and dad moved with us ,now all their friends and relatives have passed away those who are close to her age 80 up all seem to have called to see how mom was and I told them and said they and their family are welcome to come up, they all seemed happy for the invitation. But after 4 years they have not come up and all we get is a Christmas card with a very short note saying they will call soon. So do not feel it is you or your husband ,it is them all want to know how she was but now they know so that's it. And for our friends the same thing .we have one family of friends that move here 2 years before we did and they have sort of come around on and off. But thy have a daughter and she is wonderful she calls and stays with mom (Grandma Jo)so jack and I can get out to Christmas shop and for our anniversary and tells us call her any time. But I hate to put more work on her she has 2 daughters one in college one in high school help her husband in their business ,also does her mothers housework as she has Arthritis plus keeps her home spotless. So we just go out together twice a year she has to much but she just is wonderful and a real treasure. We also have no children. We have a nephew born and lives in Florida and we got ONE thank you card from him (he got a computer then for Christmas)SO we are leaving everything to our friend children .As for help with any medical problems we call the Alz.or. 1-800-272-3900 they seem to have the most answers for health matters etc. But I guess we (Caregivers) are mostly on our own .Just keep yourself healthy and try to have or take time to do something you like to do. We will keep you in prayer. Oh the church people are too busy too. Depend on God know matter how bad things seem to be.



 







 

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