A Little Advice Here...
Comments
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You are so right Kathi! IKathy G. said:Great Feedback!
Debrajo
I have been having some problems navigating the board the past week so have not been able to respond to many posts. Yours caught my attention as my husband & myself became my dad's FT caregivers when he had Alzheimer's. My husband was home w/him all day as he is disabled, and then I came home after work and did my part. In addition to the two of us working almost around the clock ( he progressed to the Sundowner's phase & was roaming around trying to go out at all hours) my kids also pitched in when able. I remember a hospital social worker telling us it took on average of 7 caretakers to care for 1 person with Alzheimer's or another similar debilitating disease!
So all the information you have gotton from other members on this board is so on point, but I just wanted to stress what has been said about not being able to do this on your own. I really think I developed like a post traumatic disorder after doing his care for 3 years....when my mother became terminally ill several years later or there were other serious stressors dad's death I went into anxiety mode, became forgetful, overwhelmed and very emotional.
One of the things I have been reading in reference to our cancer is that stress is not good for our ongoing recovery. I am thankful you have begun to find some help to relieve you of sole responsibility.
Funny you should mention your brother's comment about 'mom liking you better anyhow'....I have 3 brothers & they did not deal well with either of our parents falling ill. I just don't think they could face it emotionally...seems alot of men are just not wired to be caretakers! Plus we had alot of childhood rivalry and competition issues surface during that time with remarks, opinions & behaviors reminisient of when we were 8...lol! It got to the point where rather than deal with this crap I chose to continue doing the care within my own family unit, but like I said above have paid for it dearly !
Best of luck! You surely have your hands full with both parents!Oh, and I thought Medicare NEVER ran out??????
Kathy
You are so right Kathi! I hate that I can't take care of my step-dad...he is so lonely and sad, just down-right pittyful. I did talk to some of the Home's workers(the have a wing for Alzheimers...he's just not there yet)who have worked with Alzheimers people for years and though he is pretty rational now he does roam, sleeps at odd time as if time has no meaning, and he is into the sundowners stage also, they all agree, it takes a whole staff 24/7 to keep up with someone like him. They also keep telling he WON'T get better. When I agreed to take both of them, he had an inoperable aeortic anyruism that was expected to go at any time. I think a 5.1 is critical to operate, his is 7.9 now. So we really were not expecting him to last long. Then the Alzheimers hit big time. That's why I feel so guilty about him, I promised him a home, now I can't do it. And yes, I didn't think Medicare ever runs out, but it seems like you reach a cap then you have to wait 60 days without ANY type of out-pay then it starts over again. Medicaid is actually the one that pays for nursing homes...Medicare pays nothing on that! I've gotten a real education lately on government protocal! Thanks for responding! Best, Debra
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Alzheimer'sdebrajo said:You are so right Kathi! I
You are so right Kathi! I hate that I can't take care of my step-dad...he is so lonely and sad, just down-right pittyful. I did talk to some of the Home's workers(the have a wing for Alzheimers...he's just not there yet)who have worked with Alzheimers people for years and though he is pretty rational now he does roam, sleeps at odd time as if time has no meaning, and he is into the sundowners stage also, they all agree, it takes a whole staff 24/7 to keep up with someone like him. They also keep telling he WON'T get better. When I agreed to take both of them, he had an inoperable aeortic anyruism that was expected to go at any time. I think a 5.1 is critical to operate, his is 7.9 now. So we really were not expecting him to last long. Then the Alzheimers hit big time. That's why I feel so guilty about him, I promised him a home, now I can't do it. And yes, I didn't think Medicare ever runs out, but it seems like you reach a cap then you have to wait 60 days without ANY type of out-pay then it starts over again. Medicaid is actually the one that pays for nursing homes...Medicare pays nothing on that! I've gotten a real education lately on government protocal! Thanks for responding! Best, Debra
This is a horrible disease as in most cases the person's body works fine, as the mind or brain cells basically start dying. I've seen my mom go from a thriving 80 yr old living in her beautiful home all by herself....able to function and drive. To...a woman who got lost various times driving, until I received a call one nite at 10pm from a police officer, informing me mom was lost/confused some 40 miles from her home...gee! We picked her up and that was the last time she every saw her car and every drove again. Withing 3 months my brother (who lives in Alaska) came to our area and we moved her to a retirement home. I knew I couldn't take care of her at my home with the family, so we're using her money to pay or the expensive $4500 per month home. They do everything for her and provide all meals as well as tons of socialization. Today some 3 years later, mom has a boyfriend, has a huge smile on her face and is well taken care of by the full-time staff.
I give anyone high marks to bring a parent with alzheimer's into their home and provide full-time care themselvs. It's so, so difficult, but many people have no choice. Debrajo with your FIL that would be a very difficult sitation to as well take him into your home...very honorable on your part might I say, but tough!!!
Medicare basically covers the health care, and Medicaid picks up when one is down to their last $999 in their checking/savings accounts. Of course, they have very strict rules which have a look back period of 5 years....so if anyone uses the patients money outside of for the patient, the look back starts over. So...if all is followed for the past 5 years and the person is down to their last $999,then can qualify for medicaid. Most retirement faciliities do offer so many Medicaid beds, and if qualified all is paid for via Medicaid.
Kathi, I give you credit for taking care of a parent.....and yes stress isn't good for anyone, especially one who's dealing with a history of cancer.
You ladies are simply the best,,,,,
Jan
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You have no idea right now of Being a hero!debrajo said:You are so right Kathi! I
You are so right Kathi! I hate that I can't take care of my step-dad...he is so lonely and sad, just down-right pittyful. I did talk to some of the Home's workers(the have a wing for Alzheimers...he's just not there yet)who have worked with Alzheimers people for years and though he is pretty rational now he does roam, sleeps at odd time as if time has no meaning, and he is into the sundowners stage also, they all agree, it takes a whole staff 24/7 to keep up with someone like him. They also keep telling he WON'T get better. When I agreed to take both of them, he had an inoperable aeortic anyruism that was expected to go at any time. I think a 5.1 is critical to operate, his is 7.9 now. So we really were not expecting him to last long. Then the Alzheimers hit big time. That's why I feel so guilty about him, I promised him a home, now I can't do it. And yes, I didn't think Medicare ever runs out, but it seems like you reach a cap then you have to wait 60 days without ANY type of out-pay then it starts over again. Medicaid is actually the one that pays for nursing homes...Medicare pays nothing on that! I've gotten a real education lately on government protocal! Thanks for responding! Best, Debra
Debrajo,
You really amaze me with all you have going on...don' t think you are able to recognize what a Godsend you are to both parents...not to mention your siblings who you are relieving of most of the anguish, frustration, guilt and stress that comes with having a sick parent reside in your home.
I,, too, felt guilty about my dad being lonely, confused, and dependent. Both my parents always told us they did not want to be burdens, and being of the Depession era were not comfortable asking for help. Although dad' s illness put a lot of mental and time stressors on me the hardest was the emotional feelings of powerlessness to stop his progression downwards. He had told me to use his VA benefits & put him in a nursing home when he got bad, but I struggled with doing that until his Dr. and that hospital social worker pointed out it took at least 7 to care for someone at his stage. I am grateful to those professionals who eased slot of my guilt. Dad died 6 months after going in so he was near death when admitted so that also made me feel less guilty.
There were so many special times we got to spend together and as a result ofof this disease. I got family history I had not heard before. One day I came home from work and asked him how his day was. He told me he had been out shopping with his brother buying my mom' s engagement ring! Of course all this had happened over 50 years ago & the brother he mentioned was dead, but he was so excited and detailed about it the experience was priceless!
I hope you are able to enjoy some special times with your steps as like this before he worsens....my thoughts are with you!
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Jan, thanks,what a terrifyingKathy G. said:You have no idea right now of Being a hero!
Debrajo,
You really amaze me with all you have going on...don' t think you are able to recognize what a Godsend you are to both parents...not to mention your siblings who you are relieving of most of the anguish, frustration, guilt and stress that comes with having a sick parent reside in your home.
I,, too, felt guilty about my dad being lonely, confused, and dependent. Both my parents always told us they did not want to be burdens, and being of the Depession era were not comfortable asking for help. Although dad' s illness put a lot of mental and time stressors on me the hardest was the emotional feelings of powerlessness to stop his progression downwards. He had told me to use his VA benefits & put him in a nursing home when he got bad, but I struggled with doing that until his Dr. and that hospital social worker pointed out it took at least 7 to care for someone at his stage. I am grateful to those professionals who eased slot of my guilt. Dad died 6 months after going in so he was near death when admitted so that also made me feel less guilty.
There were so many special times we got to spend together and as a result ofof this disease. I got family history I had not heard before. One day I came home from work and asked him how his day was. He told me he had been out shopping with his brother buying my mom' s engagement ring! Of course all this had happened over 50 years ago & the brother he mentioned was dead, but he was so excited and detailed about it the experience was priceless!
I hope you are able to enjoy some special times with your steps as like this before he worsens....my thoughts are with you!
Jan, thanks,what a terrifying thing to have the police find your mother so far from home! We did (finialy after several small accidents) get the state of Texas to pull his drivers liensens, but he still insists he can drive,so we had to take the keys which seemed to make him so much worse mentaly. He said we were trying to make him less a man?! Kathi, what a wonderful story of the engagement! I would hope to have some experences with him! I think his natural daughter is missing out on some valuable time with him. The part that saddens me is that he keeps begging me to take him home with me, that he'll be good, that he will even sleep in the car or on the floor, and that he promises not to have an accident! As if I care about accidents! It just breaks my heart! He is the only "grandpa" two of my kids know of and two more only have faint memories of their natural grandfathers. You all have been so helpful letting me whine and I know I have to get tough, but it will cost me in stress which is bad, but it is what it is and I will deal. Thanks for all the shoulders! Best, debra
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Dear Debrajo,
I work inDear Debrajo,
I work in Geriatrics, am a family caregiver, and am going through Chemo treatments, so can relate to your struggles. Here are some other thoughts that might be of help:
- Are either your mother or step-father Veterans? If so, are they registered with the VA? If not, I strongly encourage your to contact the VA so your family member and you can take advantage of some of the low cost or free services available to Veterans and live-in caregivers such as respite, adult day healthcare. There are is also financial assistance available to elderly low income Veterans who served during a time of combat, ask about Pension, and Aid and Attendance. To help with registering for the VA, check out the website www.va.gov or call the VA Caregiver Support Line: 1-855-260-3274.
- Check with your local Area Agency on Aging office. there should be one in your county. They should be able to tell you about potential services available for your mother as well as your step-father. Most counties have some limited funds available for respite for live-in caregivers. Some programs are income dependent, some not.
- If your mother is considered homebound, is in need of either nursing or physical therapy services at home, she may qualify for home health, which could also include a home health aide to help her with personal care. This would come under MEDICARE. Ask the nursing home social worker, or if your mom is already at home, ask her doctor for a referral. Depending upon her particular Medicare plan coverage, there may or may not be a co-pay, but the social worker or home health agency should be able to tell you.
- The Alzheimers Association sometimes has respite funds and/or programs. Check with your local chapter. They can also help with an ID bracelet for those who wander, etc.
- AARP Website has a good downloadable booklet: PREPARE TO CARE. www.aarp.org.
- Some communities have a nonprofit organization with volunteers to assist caregivers and/or elderly who live in the community. Some are called Interfaith Caregivers Alliance. Some churches have wonderful volunteer programs, circles of care, or parish nurses. Some Senior Centers have volunteer programs with "sitters."
- Book for caregivers of persons with dementia - THE 36 HOUR DAY.
- Some of our sibling caregivers like the book THEIR YOUR PARENTS TOO.
- Adult day cares are awesome and can be lifesavers. Not only does it give the caregiver a break, but the person with dementia is happily and busily engaged during the day and thus may wander less at night. Some bigou, cities now have Adult night care programs for the wanderers, so that caregivers can sleep at night.Hugs to you, and your caring heart. As they say when you fly - "When you travel with small children or other dependents, put on your own oxygen mask first.Sungranny
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Thanks so much for all theSUNGRANNY said:Dear Debrajo,
I work inDear Debrajo,
I work in Geriatrics, am a family caregiver, and am going through Chemo treatments, so can relate to your struggles. Here are some other thoughts that might be of help:
- Are either your mother or step-father Veterans? If so, are they registered with the VA? If not, I strongly encourage your to contact the VA so your family member and you can take advantage of some of the low cost or free services available to Veterans and live-in caregivers such as respite, adult day healthcare. There are is also financial assistance available to elderly low income Veterans who served during a time of combat, ask about Pension, and Aid and Attendance. To help with registering for the VA, check out the website www.va.gov or call the VA Caregiver Support Line: 1-855-260-3274.
- Check with your local Area Agency on Aging office. there should be one in your county. They should be able to tell you about potential services available for your mother as well as your step-father. Most counties have some limited funds available for respite for live-in caregivers. Some programs are income dependent, some not.
- If your mother is considered homebound, is in need of either nursing or physical therapy services at home, she may qualify for home health, which could also include a home health aide to help her with personal care. This would come under MEDICARE. Ask the nursing home social worker, or if your mom is already at home, ask her doctor for a referral. Depending upon her particular Medicare plan coverage, there may or may not be a co-pay, but the social worker or home health agency should be able to tell you.
- The Alzheimers Association sometimes has respite funds and/or programs. Check with your local chapter. They can also help with an ID bracelet for those who wander, etc.
- AARP Website has a good downloadable booklet: PREPARE TO CARE. www.aarp.org.
- Some communities have a nonprofit organization with volunteers to assist caregivers and/or elderly who live in the community. Some are called Interfaith Caregivers Alliance. Some churches have wonderful volunteer programs, circles of care, or parish nurses. Some Senior Centers have volunteer programs with "sitters."
- Book for caregivers of persons with dementia - THE 36 HOUR DAY.
- Some of our sibling caregivers like the book THEIR YOUR PARENTS TOO.
- Adult day cares are awesome and can be lifesavers. Not only does it give the caregiver a break, but the person with dementia is happily and busily engaged during the day and thus may wander less at night. Some bigou, cities now have Adult night care programs for the wanderers, so that caregivers can sleep at night.Hugs to you, and your caring heart. As they say when you fly - "When you travel with small children or other dependents, put on your own oxygen mask first.Sungranny
Thanks so much for all the info Sungranny! My step dad is with the VA now and his meds and someother things are covered for him. If we do have to move him(finances)there is a Veterants facillity about 40 miles away that has agreeded to take him in a worse case seniaro. We are just now tapping into the VA part. Threr are no church or volenteer groups near here to help sit, but some of the Jr. colleges here offer their in-training CNA and LVN to sit as training with supervision at a small fee. I had not thought of the AARP group, but will check that out tonight. I do need those books...especially the 36 hour one since I feel like it's that long now and haven't even started really yet! I really don't get the sibling part. My two brothers and I are whole brother and sister, raised by the same mother and father. One told me it was a daughters "Duty" to take care of the parents....uhmmmm WHY? Maybe the book will tell me! Thanks again , all of you, for taking the time to walk me through this. Hope I can help you all one day! Best, Debrajo
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taking care of Momdebrajo said:Thanks!
Thanks to all of you for the wonderful sugestions and tips. I see this is going to be a process with no holds bared! I am meeting with the brothers' via phone since one lives two hours away and the other six hours away. I've got a better picture with them since I set up this little session. One will "contribute" to hiring a sitter once a week and for when I go for check ups at MD Anderson. the other brother( AT Our Age!) said"well Mama always liked you better than me anyway"! Are we eight or what?! The sisters-in-law are out....they have their own families to deal with! I was able to talk to the Social worker at the Rehab where she is and they have a Senior Daycare if I need a break for 50.00 an 8 hour day! Not bad at all! @ three sisters....she is 87 and fell and broke her hip. She is going to get better as far as the hip goes, and really walks better now than before. He knees have been very bad for 20+ years so she will be in a wheel chair or on a walker for short periods. I think I am just going to have to put my foot down and MAKE her do what she can for herself. She loves to be the center of attention and is what we call 'high Maintance"down here and THAT I can not do! All funds have dryed up for now, but hope to get things straight in the next two months for her to apply for Medicaid. I feel bad for step-dad...he will not get better. The Alzheimer's in in the Sun-downer phase now and he trys to roam, so I know I can't take care of both of them. Thank you all again so much, Love you all, debrajo
Debrajo, what a lot of responsibility you are taking on, especially when you have so many concerns about your own health!
I took care of my mom the last 2 years of her life, and it was very hard at times, and I was in my 30s then and healthy as horse. But...Mom had dementia, so could not be left unattended at all, plus my kids were grammar school age, so at times I felt "stretched" to cover mother, wife and daughter roles all at once.
The advice others gave that you will need help yourself as a caregiver is absolutely "spot on", as the Brits say.
Adult daycare can be a great way to get a break - sometimes park districts or churches will have low cost programs.
Bless you for taking care of your mom when you already have so much on your plate.
Nancy
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Thanks Nancy! It has beenNJZ62 said:taking care of Mom
Debrajo, what a lot of responsibility you are taking on, especially when you have so many concerns about your own health!
I took care of my mom the last 2 years of her life, and it was very hard at times, and I was in my 30s then and healthy as horse. But...Mom had dementia, so could not be left unattended at all, plus my kids were grammar school age, so at times I felt "stretched" to cover mother, wife and daughter roles all at once.
The advice others gave that you will need help yourself as a caregiver is absolutely "spot on", as the Brits say.
Adult daycare can be a great way to get a break - sometimes park districts or churches will have low cost programs.
Bless you for taking care of your mom when you already have so much on your plate.
Nancy
Thanks Nancy! It has been rocky, for her as well as for me. She is trying to do for her self,but at 87 it was hard BEFORE she broke her hip. He mind is clear,thank God,just the worn out body. We are slowly doing all the things the ladies here have listed. Our biggest problem right now are bathroom issues. Getting the right equipment has been a challenge. I am having some health issues, but don't think they are cancer related, so we will keep on keeping on! Thank you for repying! Best, debrajo
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Debrajodebrajo said:Thanks so much for all the
Thanks so much for all the info Sungranny! My step dad is with the VA now and his meds and someother things are covered for him. If we do have to move him(finances)there is a Veterants facillity about 40 miles away that has agreeded to take him in a worse case seniaro. We are just now tapping into the VA part. Threr are no church or volenteer groups near here to help sit, but some of the Jr. colleges here offer their in-training CNA and LVN to sit as training with supervision at a small fee. I had not thought of the AARP group, but will check that out tonight. I do need those books...especially the 36 hour one since I feel like it's that long now and haven't even started really yet! I really don't get the sibling part. My two brothers and I are whole brother and sister, raised by the same mother and father. One told me it was a daughters "Duty" to take care of the parents....uhmmmm WHY? Maybe the book will tell me! Thanks again , all of you, for taking the time to walk me through this. Hope I can help you all one day! Best, Debrajo
How's is all going with your mom? Thought of you yesterday and wanted to check with you as you have an awful lot on your plate.
Best to you!
Jan
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Thanks Jan and Connie! Ijazzy1 said:Debrajo
How's is all going with your mom? Thought of you yesterday and wanted to check with you as you have an awful lot on your plate.
Best to you!
Jan
Thanks Jan and Connie! I usually only get on late at night and not for very long. It is going pretty good. There have been a few melt-downs(on her part), but I am determined not to let her get into the "pity me" routine. I have kept the health catalogs and Amazon.com pretty busy ordering things that she needs. We are slowly getting to the new normal. I try to get her out on a short trip to town every other day and she goes to bed by 9:00 so that helps. It is still a lot harder than I thought it would be. I keep forgetting I am in my sixties and not my forties. Thankfully my husband (who loves my mother) has been out of work since Dec. and is actually helping with errands and small things and can watch her if I have to run out for a while. It is a learning experence and I am a slow student! So far only a few medical problems have come up(diabeties is up some and something about bloodcells that are too big?), but will get things checked out at regular dr. in March. So we carry on and once again thanks for thinking about me and for all the advice! I am always open to suggestions! Best, debrajo
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Debrajo, You're welcome!debrajo said:Thanks Jan and Connie! I
Thanks Jan and Connie! I usually only get on late at night and not for very long. It is going pretty good. There have been a few melt-downs(on her part), but I am determined not to let her get into the "pity me" routine. I have kept the health catalogs and Amazon.com pretty busy ordering things that she needs. We are slowly getting to the new normal. I try to get her out on a short trip to town every other day and she goes to bed by 9:00 so that helps. It is still a lot harder than I thought it would be. I keep forgetting I am in my sixties and not my forties. Thankfully my husband (who loves my mother) has been out of work since Dec. and is actually helping with errands and small things and can watch her if I have to run out for a while. It is a learning experence and I am a slow student! So far only a few medical problems have come up(diabeties is up some and something about bloodcells that are too big?), but will get things checked out at regular dr. in March. So we carry on and once again thanks for thinking about me and for all the advice! I am always open to suggestions! Best, debrajo
Glad things are moving along as well as can be expected. I would think it's difficult too, but remember this is NEW for both of you and part of the trial of getting to a normal...ya think?
As long as you have "ME TIME" and places in your own home to go for "needed escapes", you'll work it out. One thing I learned, mom will always be my mom and if I try to stand up and say to her 'I'm the MOM NOW' it doesn't work. Once the mom, always the mom....therefore, remember to keep the titles in tack and treat her as my mom, even though I do things for her as the MOM. Have to be creative!
Even though mom's in a retirement assisted living apartment, I've learned from the director at her facility, at this age, 2 of the most important things for the elderly -----
1. Socialization
2. Food
I believe it after mom had adjusedt in her new apt for 6 months. She'd not want to see me when it was meal time or had some sorta social gathering/outing. Wow, get out of her way, but in the end SHE IS HAPPY, THEREFORE, I AM HAPPY, TOO~
Good luck,
Jan
P.S. Another good book which I've read -- HOW TO CARE FOR AGING PARENTS, by Virginia Morris (resource guide for providing help in difficult situations)
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You are sooo right Jan! Thejazzy1 said:Debrajo, You're welcome!
Glad things are moving along as well as can be expected. I would think it's difficult too, but remember this is NEW for both of you and part of the trial of getting to a normal...ya think?
As long as you have "ME TIME" and places in your own home to go for "needed escapes", you'll work it out. One thing I learned, mom will always be my mom and if I try to stand up and say to her 'I'm the MOM NOW' it doesn't work. Once the mom, always the mom....therefore, remember to keep the titles in tack and treat her as my mom, even though I do things for her as the MOM. Have to be creative!
Even though mom's in a retirement assisted living apartment, I've learned from the director at her facility, at this age, 2 of the most important things for the elderly -----
1. Socialization
2. Food
I believe it after mom had adjusedt in her new apt for 6 months. She'd not want to see me when it was meal time or had some sorta social gathering/outing. Wow, get out of her way, but in the end SHE IS HAPPY, THEREFORE, I AM HAPPY, TOO~
Good luck,
Jan
P.S. Another good book which I've read -- HOW TO CARE FOR AGING PARENTS, by Virginia Morris (resource guide for providing help in difficult situations)
You are sooo right Jan! The lines between parent and child were drawn loooog ago! She is Mother! I have to bite my tongue at times and let her see what works for her when I could have just told her! Reminds me of one of my independent sons. He would get so mad when I tried to help with buttons that he would say"Mommy! me do it meself!' Went to town more than once with shirts buttoned up wrong,but he did do it himself! My step dad is like your mother,activities and FOOD come first! Mama seems to obsess over bathroom issues, too much, not enough, ect. Working on that! I do make her go out to at least "people watch", but she is like my "trailer" hitched to me at all times! Working on that also! Thanks for the book suggestion, I missed that one at Amazon.com the other day! Bless you! Debrajo
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Debrajodebrajo said:You are sooo right Jan! The
You are sooo right Jan! The lines between parent and child were drawn loooog ago! She is Mother! I have to bite my tongue at times and let her see what works for her when I could have just told her! Reminds me of one of my independent sons. He would get so mad when I tried to help with buttons that he would say"Mommy! me do it meself!' Went to town more than once with shirts buttoned up wrong,but he did do it himself! My step dad is like your mother,activities and FOOD come first! Mama seems to obsess over bathroom issues, too much, not enough, ect. Working on that! I do make her go out to at least "people watch", but she is like my "trailer" hitched to me at all times! Working on that also! Thanks for the book suggestion, I missed that one at Amazon.com the other day! Bless you! Debrajo
You're doing it one day at a time!!!! No one trained us to take care of our parents, just as we weren't trained to raise kids. All a learning process.
Thanks!
Jan
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