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CARENOTES | Past Carenotes | Let's Talk

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 - 10/09/12

I am looking for help for my son. His wife was diagnosed with brain cancer at 29 and given six months to live seven years ago. She is paralyzed on the left side, and has some brain damage from the surgeries and treatment. She has to be dressed, taken to the bathroom and needs help in all areas. She cannot be left alone.

They live in Michigan and he is well known for his devotion to her. Too complicate this more, my son works out of state. He flies out on Sunday and back on Friday. He pays for day care Monday to Friday and gives the night person free room and board because he can't afford to pay for 24-hour care. He is alone with her on the weekends with no help.

I live out of state and saw them last week. His health is under attack; he has high blood pressure, is gaining weight and he is depressed. I know he sees no end in sight and as much as he loves her, he has no life. His wife is physically and mentally demanding; of course the financial demands on him are huge.

All of the extended family and friends' help has gone into taking care of her; but if something happens to him, I don't know what will happen to her.

Are there any agencies or foundations for situations like this? I am very worried about him; the years have taken their toll. Any suggestions would be appreciated.

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Name: Roxanna
Location: Champaign, IL
Date: 10/19/2012
Time: 10:59 AM

Comments

The cardinal rule for caregivers is you must take care of yourself. To many times the caregiver wears out and suffers health problems. This then becomes two care receivers without a caregiver. Please have your son contact a local Cancer Support service provider or Cancer support group. The American Cancer Society can help.


Name: Ann
Location: WV
Date: 10/18/2012
Time: 09:01 AM

Comments

I am not familiar with Michigan either but you may want to check with your local American Cancer Society office. ACS has Patient Care Navigators that can hopefully help you with resource information.


Name: Dawn Song
Location: Oregon
Date: 10/15/2012
Time: 04:08 PM

Comments

As a mother and also a caregiver, my heart goes out to you and your son and daughter in law. You can help find phone numbers and contacts for your son, and you might even be able to do some of the arrangements. Could you help care for your daughter in law while he meets with the agencies? Or help a bit financially while he does this? Start with Department of Human Services for his state and go from there. May you be guided in your search and find support for you all!


Name:
Location:
Date: 10/15/2012
Time: 11:35 AM

Comments

I'm a medical social worker & I help patients like this every day. Is she on Medicaid yet? If yes, then your son could call an agency (as mentioned previously that works with disabled individuals). In NE, we have the League of Human Dignity. They have a Medicaid Waiver program that provides a caregiver (cooking/cleaning/transportation) several hours per day, several days per week (but you have to be on Medicaid 1st & they don't supply 24-hr. care). If she is NOT on Medicaid, then your son (or someone) will probably need to assist her to apply for SSD (Social Security Disability). You can do so online (it isn't difficult - or wherever her medical providers are, there is probably a medical social worker who can help with this). It usually takes 6 months to process, but I have been successful in getting patients on Medicaid (& bypassing SSD), if the patient requires (24-hr.) nursing home care, etc. You just need to be creative in your description (& in her case, I'd think that would be easy) & you need to have her doctor be specific about her disability & her needs. Your son probably has "Family Medical Leave" that would allow him to be home with her for 3 months (without losing his job). The Cancer Society has a $50 (one time) voucher (for gas)your son can apply for, if your daughter-in-law is taking chemo. or radiation treatments. They also provide education. The problem is - There just isn't much (physically) helpful HELP. We don't have "211" in our area, I haven't worked with the braintumor.org folks for a long time, & I've not even heard of the Well Spouse Association, but after perusing their website - it looks like education & emotional support, not physical support. Good luck. Sorry you're going through this. It's the pitts! I'll remember you ALL in my prayers.


Name: Funmi Adedokun
Location:
Date: 10/15/2012
Time: 07:43 AM

Comments

Please contact the the following agencies for help; -Michigan Department of Aging and elder services -Michigan Board of Social services -Department of Human Services you should be able to get help for her


Name:
Location:
Date: 10/14/2012
Time: 11:16 AM

Comments

I agree he should contact his state and county agencies for people with disabilities. Hopefull hehas already applied for Social security Benefits for her. Good luck and God bless!


Name: Larry
Location: Connecticut
Date: 10/14/2012
Time: 07:33 AM

Comments

I too echo the comments concerning the Well Spouse Association - a national peer-to-peer support organization for spouses of the chronically ill. There are many organizations that concentrate on the ill spouse, this is the only national organization that concentrates on the well spouse in the marriage, ragrdless of the illness involved. Your son is doing a wonderful job providing care and coverage for his dear wife. The toll on the Well Spouse is dramatic, increasing health risks and decreasing the joy of life. I hope you will urge him to take care of himself too. He should contact an eldercare attorney if he is worried for her possible future. That person can guide him in setting up a trust to care for her, and advise on financial matters to prevent loss of assets. There are few easy answers here and little governmental support for caregivers.


Name: Kim
Location: Philadelphia, PA
Date: 10/14/2012
Time: 06:06 AM

Comments

http://www.braintumor.org This is the organization that a friend of ours walked with after she lost her brother to a rare glioblastoma (invasive, aggressive brain cancer) last year. They seem like a good organization and they hold a benefit Race for Hope walk in Philadelphia that we donated to in his memory. They also have a newsletter with tips and resources, so maybe they have something that will help your son, or can refer him to. If I think of anything else that is national, I will post here, but this is the first organization I thought of because of my friend's brother.


Name: tj
Location: wv
Date: 10/12/2012
Time: 06:26 AM

Comments

Hopefully both have completed advance directives. Aside from that, contact the Cancer Society for assistance, they may be able to offer some assistance. Your son needs to take care of himself first or he will be no good for anyone else nor will he be able to be a caregiver to his wife. Contact the local health department and ask for an in-home evaluation, they may be able to link him with local services. It is a difficult role I certainly wish him good luck and will hope that he finds resources that will assist him in the care of his wife.


Name: Kelly
Location: PA
Date: 10/09/2012
Time: 08:56 AM

Comments

I'm not familiar with Michigan either, but I'd suggest he contact a county or state agency serving adults with disabilities. There may be a Waiver program or services which may offer help to pay for the day care or helpers. Best wishes!


Name:
Location:
Date: 10/09/2012
Time: 08:52 AM

Comments

There is a nationwide group called WellSpouse (check out www.wellspouse.org) that meets in practically every state regularly (sometimes in more than one city), so he could probably even find one in the state in which he works. I think something like this would be a huge help to him, at least emotionally and for additional resources. And if he can't make the meetings, he could talk to the group's leader and others who are also in his shoes.


Name:
Location:
Date: 10/09/2012
Time: 07:43 AM

Comments

Where in Michigan does your son live? I have some information for mid Michigan and if they are out of his area they can direct him to closer resources: Region VII- 800-858-1637 Cancer Services: 989-835-4841


Name: F. Zeigler
Location: Tamarac, Florida
Date: 10/09/2012
Time: 05:32 AM

Comments

Hello, I don't live in Michigan, but am familiar with local resources associated with dialing "211". Whereever you are located, it will connect you to your local Information and Referral Center for community services. The other alternative, if his wife is low income, is to go for a researched nursing home that can provide 24 hour care and he can visit her as often as he likes. It is not ideal I know, but it is at least an option. I pray that he will pull through this situation.


 







 

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