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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 - 6/30/10
Hello, for only one year, and my husband has Parkinson's. I don't know what to do to be a good caregiver to my husband. This is all new to me, because I don't understand much about this disease. What can you recommend I do to help him more. He is always hurting, and always stiff. Also he's always tired and he doesn't want to do much about anything. Please help.
 
Thanks,
 

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Name: Kari Knight
Location: Pleasantville, PA
Date: 07/17/2010
Time: 06:23 AM

Comments

I have been married for over a year. My husband also has a degenerative neurological disease, and we are in our early 50's. I find it helpful to keep active in the things I was active with before we married - church, dinner out with friends, volunteering,... We often make plans to do things, yet when the time comes my husband decides he is too tired to follow through with plans and we do nothing. I have tried to have an alternate plan for myself so I do not become too frustrated and disappointed when our plans don't happen. Sometimes I just go for a walk or bike ride around the neighborhood. I have tried to read all I can about the disease, go to support groups especialy for the disease,and ask doctors all kinds of questions. Neurologynow.com has a free publication which you may find helpful. Know that you are not alone. There are caregivers everywhere of all ages. Look for the positive ones, like ann Gallagher, whether it be in your neighborhood, church, or on line community. Post encouraging notes on your mirror and cabinet doors, like the full version of the serenity prayer. hugs and prayers, kari


Name: Ann Gallagher
Location: Murfreesboro, TN
Date: 07/01/2010
Time: 09:12 AM

Comments

Dear Friend..My heart goes out to you as it is so very hard to see your husband with a terrible disease and you expected so much more in your lives together. I was a caregiver of my husband who had Alzheimers and so I understand some of your heartache. I would suggest knowledge is power when being a caregiver read all you can on the internet and in books to better understand his disease. I found when my husband was still able to do an activity mornings was the time he had the most energy and some interest. Puzzels with the larger peices may be benefical and if your husbands thought processes and ability to use his hands are good board games might be helpful. It doesn't have to go well just bring some good feelings to his day. My husband lost all his abilties in using his hands early in the disease. I would say simplify everything and redirect his attention to something else when he seems irritated or discouaged. Say if he enjoys ice cream or a cup of coffee suggest to him lets have an ice cream...walk outside sit and enjoy nature even a simple blue sky can bring peace to ones inner being...go for a ride perhaps in the country side playing his favorite music...take a small lunch to the park..just some thoughts. I found music to be very healing and allowed some gentle peace for my husband and me as well.. I believe accepting the disease and not fighting the disease thinking you can make things better really removes a lot of stress. And always see the person..your beloved..and not the disease. Remembering your husband did not ask for the disease and neither one of you caused it...be kind to your self!! May I say always looking for joy in ones day and expecting it will happens helps so much..for me with the dark shadows of Alzheimers the tiny miracles and moments of a sweet smile, a twinkle in his eyes that said I love you and his hand in mine became my true treasures and I hold the remembrances of those times of joy very close today. HUGS are so huge make them a part of his and your days..they will be rewarding to both of you. When all else fails a quiet loving HUG and I love you is wonderful medicine for the heart and soul. : ) Be kind to yourself dear "D" and don't try and be super women. Put your name on the to do list also. Have some solace time for yourself perhaps a walk in the park with a friend or lunch. Have a sibling, child or friend sit with your husband and no guilty feelings dear friend you need this time to be a good caregiver for your beloved and to survive. Bring your children and grandchildren into this new world you and your husband are now living for it is a part of their lives also..you will find they will learn the true meaning of a giving and compassionate heart. : ) You will see love for your husband will help you conquer so many fears and give you added strength for each day. : ) And for me prayer was my anchor I could not have been a caregiver in my home for my beloved husband for 7 years without the strength and sustaining grace of my Lord. And dear "D" give your self permission to cry and to hate the disease to reach out for help and understanding..always know you are loved and other caregivers want to be there for you.: ) Finding a support board on the internet or in your community will be helpful to you. An Alzheimers support board was a life savor for me and I have made so many close friends in those 8 years. Since 05 when my husband went to his heavenly home I have stayed there and am a moderator hoping to take what my husband endured with AD and help others..I feel he is looking over my shoulder. : ) Your going to be OK dear friend have faith in your strength and abilities you will look back some day and be pleased that you done the best that you could as a care giver for your dear husband and no one can ever ask more of you..find a gentle peace in that knowledge. : ).. Encouraging HUGS..Ann


Name: Kim Harrison
Location: Hot Springs Village, Arkansas
Date: 06/30/2010
Time: 08:13 PM

Comments

D - My husband was diagnosed with PD right before we got married -- 10 years ago. It took me 8 years to get him to attend a support group, but am I glad. I attend all the meetings with him, and we have learned more in the past 2 years than in the 8 years before. Now that I understand the disease better, it is easier (I won't say easy) to deal with his symptoms. I can also talk with his doctors better, and understand them better than before. I found a support group through the American Parkinson Disease web site. There's a map with all of the chapters, nationwide, listed, along with contact information. I'm not sure where you are located, but try to find a support group in your area. The APDA web site also has some caregiver info on it, and some of the chapter web sites have great information -- especially AZ, St. Louis, Atlanta, and several others (I haven't thoroughly investigated all of them). You might also check with your local Area Agency on Aging for any resources available, or if there's a caregivers support group in your area. As far as your husband's complaints -- mine's much the same way. If you can get him to do any exercise at all, that is the best thing in dealing with this disease. Tia Chi is the best, and some can be done sitting, if his balance is too bad. It helps the stiffness a lot. Yoga is also a good exercise, but can be more difficult than Tia Chi with PD. Keeping their interest in things is one of the hardest things with PD. Lack of interest and almost ADD type of behavior is fairly typical with PD. Good Luck and learn as much as you can. That's your best defense.


Name: MaryAnne Belew
Location: Allen, Texas
Date: 06/30/2010
Time: 03:26 PM

Comments

D - I was touched by your note. My husband is in the latter stages of Parkinson's and Shy-Drager syndrome, and we only learned about it about 2 years ago. For me it became very difficult as 24 hour caretaker, but I would not have done it any other way. Just love your guy and be glad that you are blessed with him, and always let him know that. Also, though, do take time out for getting with friends and to church, etc. One thing I learned the hard way was that you really can just love him and do the best you can, but you also need to really take care of your own health. Find things that you two can enjoy together and perhaps figure out a couple of friends you can do things with occasionally and "mellow out." We have been so fortunate to have a caring church family who has lifted both of us up many, many times. Enjoy your man, health problems and all; make all the sweet memories that you can. Get some rest yourself and get out with others; this is a must! It will help you keep your own mental and physical health. My sweet Grady has had severe loss of memory and abilities, but of late has had a resurgence of both and we have had some really wonderful times together at the nursing home where he has been for the past year. The memories come and go, but the same sweet precious person is there, and as time goes by you will appreciate that so much. God bless you, dear sister in caring.


Name: Corky 1947
Location: Long Island, New York
Date: 06/30/2010
Time: 03:23 PM

Comments

Dear D Where do I begin? My husband was diagnosed 11 years ago with PD by a general neurologist. He is now seeing a PD specialist, so it will help greatly if your husband sees such a specialist or a neurologist who specializes in movement disorders. PD specialists use a variety of analytical tools to help them understand the type of PD your husband has and how much medicine he needs to manage his "off" episodes and pain. If your husband is depressed because of his PD, he may need an antidepressant. Ask your husband's PD doctor to recommend a neuro psychiatrist for help in this area. Trust me, it will help him and you if he can learn to manage his PD. This is not a condition that is easy for caregivers. You must both remain active and maintain a vigorous social life. However, you should arrange for "me" time as well. If you can find a friend, relative or aide to relieve you for a few hours a week, it will help you greatly. If your husband has atherosclerosis (narrowing of the arteries), he should ask to have an MRI to determine if blood flow to the brain is adequate. My husband learned recently that this complication is contributing to his pain (mostly in his lower legs and feet), so now he is finally getting help in this area. I wish you perseverance and patience as you go through this journey with your husband. Blessings!


Name: Terri
Location: Falls Church, VA
Date: 06/30/2010
Time: 01:52 PM

Comments

I'm so sorry for your situation D. My husband also came down with a degenerative neurological illness in our first year of marriage - we've been married 11 years, and I have been helped greatly by the Well Spouse Association, a support organization for spousal caregivers. You will find lots of friends and support there, online and perhaps in local face-to-face support groups. Please check out www.wellspouse.org.


Name: Jane
Location: Kansas City
Date: 06/30/2010
Time: 12:18 PM

Comments

1. Call the local office of the Parkinson Foundation. Get yourself educated about the disease that has struck your husband. You can't expect to help him successfully if you don't know what he is experiencing and feeling. 2. Call the local Area Agency on Aging and ask for the Caregiver Support Program. There is an area agency on aging that covers every county in the US. Services include assessment of needs, respite care, home delivered meals, case management and many other things. If you or your husband is over age 60, you qualify for services through the AAA. 3. Consider joining a support group for caregivers. Being in a room with 8 or 9 other caregivers with lots of widsom and experience is valuable when you have questions. They will not let you down. 4. Gather your family and ask them for help. If you have not family nearby, look to your church or your social network. No caregiver can do this job alone --we all need help. 5. Take care of your self by having some time alone each day doing what relaxes you. This is not a luxury; it is a necessity if you want to finish this marathon called caregiving.


Name:
Location:
Date: 06/30/2010
Time: 09:38 AM

Comments

Hello D- My first suggestion would be to educate yourself on Parkinson's diesese. Google it on the internet and I'm sure you will find a lot of info. Second- I would find a support group or someone you can talk to about what is happening in your life now. Third- There are daycare centers for adults, out there that will keep your husband for a few hours, so you can take a break or do errands. Remember to not ware yourself down, get help when you need it. Good luck and I will pray for you and your husband. Another D


Name:
Location:
Date: 06/30/2010
Time: 07:43 AM

Comments

Dear D., Your story is so heartbreaking! This must be so difficult for you and your husband! I don't know too much about Parkinsons but I do know that there is a national Parkinsons Foundation and the website is: www.pdf.org. Or you can call them at:(800) 457-6676. There are chapters in different parts of the country and hopefully there is one near you. Some of the chapters offer Parkinsons support groups that are helpful to family caregivers. I'm sure that if you check their website or call them that the information will be helpful to you. I hope that you and your husband will get the help that you need! God bless you! Edie in CT


Name:
Location:
Date: 06/30/2010
Time: 06:29 AM

Comments

I am a geriatric caremanager who has worked with many families facing Parkinsons.The very best source for resources and help is APDA Massachusetts Paul Proulx Phone: (978) 685-2240 paulproulx@comcast.net. Joel Brown 142 Perkins Row ... This group is intended for individuals with Parkinson's disease. ... www.apdama.org/cmsb/groupdetail_List.php - Cached - Similar.. They can point you to an organization in your area. Leslie


Name:
Location:
Date: 06/30/2010
Time: 06:25 AM

Comments

I have had the same problem and I found the book Passages in Caregiving by Gail Sheehy a VERY helpful book with lots of places to get help. Also, I have gotten booklets from the National Parkinsons Org. Check them out on the internet. Carol


Name: Susan
Location: Milwaukee
Date: 06/30/2010
Time: 06:08 AM

Comments

My husband has had Parkinson Disease for 15 years. It is important for your husband to get Physical Therapy on a weekly basis to help alleviate the ridigity. Massage therapy is also very helpful but can be expensive.


Name: Dorothy
Location: Virginia
Date: 06/30/2010
Time: 06:05 AM

Comments

I suggest that you check out the Well Spouse Association, a support organization for spousal caregivers (www.wellspouse.org). The online forum is a wonderful way to get advice and support from others who understand the special challenges in your situation.


Name: RA
Location: ID
Date: 06/30/2010
Time: 05:54 AM

Comments

I would recommend checking out the National Parkinson Foundation. You can find a lot of information about your husband's disease, which will help you understand his symptoms. And you can also connect with other caregivers dealing with the same issues. Being a caregiver is a tough job, but it can be very rewarding. You are making a difference in your husband's life just being there with him. One very important thing I have learned is to make sure you take care of yourself, too.


 







 

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