I Prefer to Take Life One Panic Attack at a Time

06 Jun 2015 Leave a comment

by Bobbi Carducci in care giving, caregiver, caregiver anger, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues Tags: , , , , , , , , , , , , , ,

panic attackPanic attacks, migraine headaches, clumps of my hair clogging the shower drain. These are all things I experienced as a caregiver.  Stress was sapping my mental and physical reserves as his conditions worsened. I needed help.  People said, “Take care of yourself. Eat right. Exercise. Get enough rest.”

Sure, I thought.  I’ll get right on that.

Are you kidding me?  If I were to be true to my instincts right now this page would be filled with some very strong, unbecoming language describing how useless advice is when it isn’t followed up with the resources to make a difference.

I’ve issued a challenge to Dr. Phil but it is also for family and friends of caregivers everywhere. The people caring for others now will be the ones needing care next. How dire their health issues will be are being greatly influenced by the degree of stress they are experiencing during the weeks, months, and years they are giving so much of themselves. You can make a difference.

If you can give much help, give much. If you can give only a little, give a little. A warm meal, short nap, a visit now and then will be appreciated more than you know. A full night’s rest is a blessing. Time to go to the grocery store and take in the aroma of fresh fruit could be like a vacation for someone who hadn’t been able to do it in months.

Please help!

More Comments for Dr. Phil in response to the Dr. Phil challenge:

Ann  – Comment: I agree. I am a cancer patient and my energy level is very low.

My husband is the caregiver for me and his mom who has dementia. I would love to see some real programs that would help caregivers cope. My husband is a loving caring person but I know at times it seems very overbearing to him.

Tammie Marett – Comment: I take care of my bedridden husband. He has no other family and we live over. 8 hours from mine who couldn’t help much anyway.  I would love to take your advice bit its all the same mumbo jumbo. There is no money for caregivers. My husband is a vet.  They offer me 2 respite days a month of only 6 hours each time.  You offered no solutions just the same tired advice.  This problem is going to get larger as the baby boomer generation ages.

Kristi Simmons – Comment: I am living the Oreo life. My husband and I are caregivers for my mother for the last 5 years.  I also have a 21 year old a 10 year old and a 6 year old.  My husband and I both work 40 hours a week. I have 3 siblings. My oldest brother takes care of my mom’s finances, which creates its own tension sometimes.  My other two siblings do nothing to help and often feel like it’s our responsibility to care for mom since we live with her rent free.  They don’t understand the mental and physical drain this can be.  We’re lucky, my mom is good natured and fairly easy to care for the majority of the time, but it’s hard to be caregiver, mother, teacher and wife 24/7 365.   We’ve been lucky enough to have friends that mom is comfortable enough with to stay with her so we caN take short trips with our kids occasionally.  Unless you’ve done this you have no clue how exhausting it is

Kathleen Tingler – Comment: I agree with your take on offering advice and not an alternative.  I am a full time care taker and have no one that wants to step up and help me find a way to catch a break even for an hour or so a week.

Rhonda Partin-Sharp – Comment: Oh, I agree with this article – gives us caregivers a way to take care of ourselves – when you are going on two hours of sleep a night because that is the ONLY way to get just the priorities done because you are taking care of two elderly parents – don’t tell me to get sufficient sleep.  That’s insane.  We need to stop telling the caregivers what to do better and need to start telling the lazy family members (every caregiver support group will tell you that it usually ends up being one person doing it all with not only no help from the family but judgment and pressure from the family) what they need to to do help.

Shannon Watstler – Comment: Yes please, caregivers do not always need unsolicited advise, just real quality help ! Many friends & family abandoned, compare their normal every day situations & give excuses “why they can’t help” or “they just want to know how the patient is & then have to go”. It’s a exhausting & never ending job, non-paying & sometimes you truly feel hopeless. If I ever have to go thru this again, I will def do things a little different & ask for more help. many people don’t handle situations of thinking about their own mortality-that’s sad ! How would they like to be in the same situation & hear excuses of why someone can’t help or just abandonment. It’s a lonely journey that no one understands except those that go thru it & are forced to deal with it head on every day even when they’d enjoy a few minutes of time for themselves.

Dawn D. Ames – Comment: This comment was right on.  My husband needs 24/7 care.  Getting out to get my owe scripts and groceries is extremely  difficult.  My children and a few friends try to help, but with his needs, the it is not always possible.  It has been three years.  It would be nice to have a couple of hours for church or to go out with friends in those times when I feel safe enough to leave him. Thanks Bobbi.

To Contact Dr.Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

https://www.facebook.com/drphilshow?fref=ts

If I Tell You I Need Help – Do Not Take It Lightly

05 Jun 2015 Leave a comment

by Bobbi Carducci in care giving Tags: , , , , , , , , , ,

Appreciated

Being told you are appreciated is something caregivers rarely hear. The people in their care are often to ill or too confused to be aware of everything their caregiver does every day.  Family members who are too far away or too busy with young children, jobs and everyday life often take caregivers for granted. Far too often they drop in to question and or criticize decisions that only someone who lives with these terrible diseases know enough about can make.

Yes, appreciation would be nice. But, make no mistake, it’s not why they do it. They do it because the need is there. They do it out of love. Many spend years caring for people who have abused them in the past because no one else will.  They don’t do it for appreciation but it would be nice to receive some once in a while.

More than the precious the moments of sincere appreciation caregivers need help. Don’t take my word for it. Read the following comments from caregivers responding to the Dr. Phil Challenge. (More to come tomorrow.)

Electra Posada – Comment: I am a paid caregiver, but I started by taking care of my father when he was dying from metastatic melanoma that had spread to his brain when he was 48. And yes, it was EXHAUSTING! I had one break for dinner out during the 5 months I was with him. I had to take away his keys and explain to him that he couldn’t drive any longer. I ended up having to try to feed him, but he was not eating by that time. I also had to clean out his mouth and brush his teeth when one of his tumors ruptured and gave him a massive nose bleed the night before. I was holding his hand when he died. I was 24 and not prepared for such things, but he wanted to stay home and wanted my sister and me to be his caregivers during the last 6 months he knew he had on this earth. This is just one story in millions people go through every day. We ask you to support and honor what we as caregivers do. We give a huge piece of ourselves, both physically and emotionally in order to make another person as safe and comfortable as possible in their time of recovery or facing the end of their lives. Thank you for helping us shed light on the difficult path we are called to take.

sheila hare – Comment: I challenge dr. phil to this as well good luck and hope to get answers  I work as a cna   since 93  and now  I take care of mom too she is 88 my sis lives in another state their is no one else  I work it live it  but I still love it  is my health going o yes ive gained weight again  single  who wants  a fat girl  and cant leave to go anywhere   well hopeing  he will create a spa for caregivers  we talk about this all the time calgon take me away!

Dylan Fliers – Comment: I am a caregiver and as I watched this segment of the show on it’s original air date, I thought it was completely useless as well.

Jennifer Pepera – Comment: I challenge you too!:) I am a caregiver to my 81 year old Mother.I would love to see some shows regarding this topic please.

Renee Herndon – Comment: There are too many caregivers to count, both full and part-time who give selflessly and without pay, or often any breaks or support from anyone else. You let us down and didn’t adequately represent what we go through or offer any true help or advice.

Dawn – Comment: Dr Phil … I am a single Mom of a 22 severely disabled Son requiring 24/7 care.  Additionally I work an extremely demanding job as an insurance consultant that is way more than a 40 hour work week.  My back-up is my 13 old son.  I eat right, try to get rest…we all know that.  What we need is help.  I’ve spent numerous days and hours advocating for our children with no voices at the Legislative Office Building in CT ..in an effort to get funding and assistance.  What many don’t understand is the impact it has on the entire family unit.  Please help us as you are so kind in helping others.

Tobi – Comment: I’m a Personal Support Worker and see the burnout of many family members taking care of their older parents and it is heartbreaking what they give up. I know of a special woman who has given up everything to live with her elderly parents and help them. she is also a very smart woman and knows that she should take better care of herself and she tries, but her parents are always on her mind. I think there should be a lot more education to the caregivers about programs to help the caregivers out more and make their life a little easier. I think they should be educated on the funding’s for renovations on homes to make it life easier for the elderly. Programs like multiple home care companies to come in and assist with chores and take the weight off the caregiver. There are companies that make nutritious meals and be delivered to your door. Apetito is one such company then there is meals on wheels. I think Community care should be paying more visits to the homes and talking to caregivers alone about what help they need. I’m always looking for ways to make my clients and their families life easier for them. It’s hard when you don’t know what direction to look in.

Michelle Morrison – Comment: I am full time carer of my father who has LBD, Parkinson’s. I hate how I need care yet the resources go only him the one over 65. It is a two way street. If I was not his daughter the person who baths him, washes the clothes, feeds, administers meds, etc. would expect compensation, and rest. I get advise. I get how dare you expect anything. Help those keep those with these conditions in a homey loving place not the pasture as my father has called nursing centers.

Beth Tomac  – Comment: Where I didn’t see the episode, I do agree that caregivers need help taking care of themselves.  I know this from personal experience as I was a caregiver for a 91 year old woman with early signs of dementia.  I was a live in caregiver for 2 weeks straight without being able to take myself or the woman out of the house.

Yvonne Holloway – Comment: Please help we all need a break.  I just got told by thr sister of my momI’m doing a terrible job and that I should get away as much as possible.  Yet all medical personnel tell me she should not be alone. Plus my mom says she does not need any help.

a. fry – Comment: AMEN! I’ve been there, done that more than once. 10 years ago, it was my in laws ( RIP) Right now I care for not only my ill spouse who had a stroke, is diabetic, has severe eye problems ( NOT from the diabetes) and aphasia ( can’t understand half what I say), I also have a 30 year old son who is bi polar one that I help manage his finances and health care, etc.

We share housing and costs with another couple in the almost the exact same boat. If we were not supporting each other, sharing expenses and giving each other breaks so we can at least get to the grocery store without paying for help, BOTH our spouses would be in  nursing homes! NO, there is NO covered care where we live for family caregivers. Our families ( and most of the general public) have NO concept whatsoever what REALLY goes on to spite us trying to tell them numerous times. One of our children was actually barred from the home due to stealing items, harassing for valuables and threatening us because they were more concerned about their “entitled” inheritance than whether we got proper care for our spouses.  Do NOT coddle us, smile and say how fantastic we are. We do NOT want to hear it. We want our health care system to DO SOMETHING!If I tell you I need you

To Contact Dr.Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/   http://www.drphil.com/   @DrPhil    https://www.facebook.com/drphilshow?fref=ts

 

 

Not Everyone Agrees With the Dr. Phil Challenge … Many More Do

03 Jun 2015 2 Comments

by Bobbi Carducci in care giving, caregiver, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, understanding dementia, women's issues Tags: , , , , , , , , , , , ,

Yesterday, in response to my post titled Caregivers Are Joining the Dr. Phil Challenge  I received the following comments from  a man taking exception to my efforts to get Dr. Phil to help.  Presented here are his views and my responses. I respect his right to express his opinions just as I respect the comments of the caregivers that I will post as they come in. Including some at the end of this very long post.

Note: I wonder if David  realizes how many of his statements  highlight exactly why I am pleading with Dr. Phil to respond. Read on and see for yourself.

David Blair – You never were clear on what you thought Dr. Phil should have done for this woman? He obviously has a huge network of resources, but mostly for people with drug & psychological problem. After all that’s his profession. When he offers his support during the show it’s largely an effort to showcase, well advertise for these centers. And the guest gets free help as a result.  He doesn’t work with any day spas? How can you be certain the show didn’t help her financially, probably not something they would have aired.

The Imperfect Caregiver (Bobbi Carducci) – I am asking the Dr. Phil Foundation to establish grants to offset the costs of respite care. Even a few hours a week would be an enormous help for so many.

David Blair – Well, as some of your commenters pointed out – there are currently millions of people in that situation. You don’t think Dr. Phil has THAT kinda money. This goes on in nearly every family in this country.  My mom spent and amazing amount of time caring for my grandparents. I think it’s a situation many find themselves in. Families have to step up. Dr. Phil can fix a lot, but he can’t make family members compassionate if they don’t choose to be? Just asking you consider the scale of what you are expecting.

The Imperfect Caregiver – Bobbi Carducci – I hear you. I don’t expect him to fund it all. I’m asking for an opportunity to use his resources to get the message out about what it’s really like and offer SOME funding via the Dr. Phil Foundation for some in desperate need. He dropped the ball when he asked that young woman what was the hardest part of caring for her father and she said, “lifting him several times a day,” and his response was to tell her not to feel guilty about wanting time for herself. Do I think Dr. Phil has THAT kind of money? No. Do I think he can inspire others to help? Yes, I do. Just as I don’t expect him to end domestic violence himself or fix every drug addict alone. He does assist some and that is what I am hoping for and asking from him. Get the dialog and the support moving.

David Blair – I think he did use his resources to get the message out. I admit, probably the only show I watch regularly. THAT”S RIGHT! (don’t care what anyone think either.)

He’s a smart guy. Every time I’m wondering what the fu@k’s he gonna say about that? But he always says the right thing – and always a 180 from what I’d say)

Not meaning to sound unsympathetic to your cause but trying to set up a fund then try to decide (based on I don’t know what) who should get the money the logistics of which are unimaginable! Not his job or responsibility. His only responsibility is to entertain me at 3 o’clock.)

The Imperfect Caregiver – Bobbi Carducci – Thank you for your thoughts on this. Enjoy the show.

 Read More Comments by Caregiver’s Joining the Dr. Phil Challenge:

Donna Thomson – Comment: Great idea, Bobbi!  Have you written to the foundation?  Where are they based – perhaps a personal meeting or skype meeting would be appropriate.  Well done for identifying this opportunity!

doggonedmysteries – Margaret Hauser –  Comment: It’s easy to give advice when you aren’t the caregiver. I consider myself lucky when The Curmudgeon, my husband who has secondary progressive Multiple Sclerosis, is having a good enough day where I can leave him alone for a couple of hours.I can’t afford to have someone come in and give me a break. We live on his meager disability income because I can’t leave him alone for more than a couple of hours at a time. Some days not at all, depending on how bad his day is.

I haven’t had a real break in over a year. How about if Dr. Phil comes over and takes care of The Curmudgeon for a week and finds out what it is really like?I bet he wouldn’t be quite so free with his ‘advice to caregivers on taking care of themselves’ when he finds out that is not an easy thing to do when you have to take care of a home and a patient. I am not now nor have I ever been a nurse, so this is truly difficult.

Lisa Land – Comment: I am a caregiver for my 89 yr old father and saw the show as well. I wondered the same thing, why did he NOT help this girl? So many of us including myself are caregiving without an income and living off of the income of our carees, which is Social Security and is keeping us just above the poverty level. I am forwarding this to everyone I can to sign and get recognition.

Cathy Kelly – Comment: I am a caregiver for my friend and also was for his parents because there wasnt anyone else.  I am stuck here trying to get him help so I can get out. 8 years worth of ongoing stress is far too much. Help! Please! I dont want to go down with the ship.

Laura Walsh – Comment: amen to that , my husband can not be left alone, after massive stroke , bed ridden , hoyer lift to wheel chair  , canot speak or do anything for hmself  … we know what to do , but never get a chance to do it , all my energy is put into care giving and cooking and cleaning and ordering meds and doing every single need for my husband , all day long , every day , and in the middle of the night , every night … going on 4 years now !!! wearing pretty thin !!! It is almost an insult for someone to say remember to take care of yourself first , so you can take care of him , I know they mean well , but >>>>>

Jennien Seymour – Comment: well Dr Phil..unless you have given up your independence, place to live, and your job…to care for someone 24/7….you have no idea what it is like…there for you can not give advice on something you have no idea about.

Janet Ogaick – Comment: as a caregiver to my father until he passed away your advice truly means nothing what I needed was someone to help so I could have time for me time to be a mother to my 4 children time to unwind I don’t regret being my fathers caregiver he did for me and it was my turn to do for him but an hour or two a week it would have been wonderful

Carlene Reaves  – Comment: Thank you Dr. Phil for recognizing caregivers and how awesome they are. It would have been nice if you would have helped her do what you advised her to do. Much love!

Theresa Loder – Comment: as a caregiver for the past 20 years .. Parents, mother in law , and now for my husband who has many health issues, I often hear( at least once a day) for me to take care of myself..

I do my best to do that .. But it’s very hard for people not caregiving to understand the moment to moment challenges we all face.. Yes , it would be nice it someone who has a platform , to offer actual help to caregivers..

It is very hard to find any kind of respite out there..

Currently I am trying to get well from Bronchitis I picked up either in the hospital or nursing home where my husband had been recently.. He ended up with pneumonia..

This is the first time I had to go to the ER for myself .. We caregivers would appreciate any and all actual help we can receive by way of letting people know the challenges we face on a minute to minute basis. Most all of us are going to be faced with this someday… There needs to be lots of discussion about all things caregiving… Sooner rather than .  positive thoughts to all caregivers out there.. Theresa Loder

Contact Dr. Phil and add your voice to the Imperfect Caregiver challenge: http://drphilfoundation.org/  http://www.drphil.com/   @DrPhil   https://www.facebook.com/drphilshow?fref=ts

 

More caregiver comments tomorrow.

Caregivers Are Joining the Dr. Phil Challenge – Add Your Voice

02 Jun 2015 Leave a comment

by Bobbi Carducci in care giving, Caregiving, family issues, Lewy Body Dementia, mental illness, sandwich generation, understanding dementia, women's issues Tags: , , , , , , , , , ,

Dr. Phil, I challenge you to use your huge resources and the Dr. Phil Foundation to develop a program of grants to help caregivers follow your advice to accept help, rest, and take care of themselves so they can continue to care for those they love so much that they are willing to sacrifice their health to for them. Respite care is vital for caregivers and you can help provide it.

On May 30, 2015 I issued the challenge above to Dr. Phil to provide real help for caregivers instead of the same old advice to rest, eat right, exercise, take time to herself and not feel guilty that he told a young caregiver on the Dr. Phil Show on May 26th.

While only two responses appear in the message box on that initial post, I received many more via email and I will be posting them a few at a time so their voices are heard.

Please share these blog posts with as many people as possible and encourage them to do the same. There is strength in numbers and ours are growing every day.

Dr. Phil, Caregivers need help!

Jennifer Bailey – Comment: This woman is under as much stress as the people dealing with abuse- the abused never knows when he or she may be hit next, and on guard when the abuser is near, but the caretaker has to care for someone, worry at the things they see going wrong in front of their eyes… and when we are gone we have to wonder if those things are happening. Even when we have respite care you worry because the person does not know your loved one as well, and because they are alone with a person and often either helpless or have the potential to become violent when confused. We sleep when the loved one is safe, and often wake up to any small sound, like a parent of a small child. We eat when we can in our tasks, and for many of us it’s what we can afford after limiting our work hours to care for the person. Platitudes and the advice on every caregiver’s website do not help us.

Susan house – Comment: We need help usually only one person steps up to care for their loved one but boy everyone else has a lot of advice..there is no help there is no relief unless you have lots of money to spend..my husband and I would love to go in a vacation and know my mom was safe and cared for but can’t afford $15per hour x 24hrs x however many days I’m 59 yrs old my husband is 60 if mom lives 10 more years what if those are the best ten my husband and I have left..because with the stress of taking care of my mom whom I love and will care for until I can’t..May be that stress will kill me..sometimes you just need a break you just need to breathe you just need to…..and there’s no affordable help and how do u know if you hire someone that they will treat your loved one they way they should.there are no regulations to assure this its hire at your own risk and pay crazy money to a person who may not care..yes Dr Phil the number of people caring for dementia people is enough to blow your mind and more everyday and younger everyday there’s no cure no help no relief. You have to look at a shell of your loved one everyday. I pray my mom has a heart attack. Or gets cancer..something that will take her fast and soon..it’s quality of life not quantity..I don’t want her to not know me..my dad died from Parkinson’s and if I get sick I’d rather have dad’s disease any day to this…please help up we are everywhere nationwide. Crying everyday for the loss of our loved ones and all we have is a Alzheimer’s dementia page where we all go to share and vent and look for support..from each other..no one care about the millions of loved ones and the caregivers..no one wants to see what we struggle with everyday..just pray it never happens to you or someone you love because you will end up just like us with no one to turn to…am I a horrible daughter because I tuck my mom in bed every night and tell her I love her and then go and pray please God take her tonight!! And if he does I will find her in the morning and beg him to bring her back cause life without her seems unbearable..and then I realize she’s almost already gone

Vixen Brumback  – Comment: Please show more consern for caregivers.

Basia  – Comment: Please provide additional support for caregivers.

Jean Ostrom -Comment: I would love to be able to exercise regularly.  I haven’t had a full-night sleep in over a year.  I haven’t gone to a movie, a concert or gone shopping with my friends.  People keep telling me I have to take care of myself, but that is impossible when I am ALWAYS taking care of my husband.

Debbie Dunlap – Comment: I am a caregiver as well. We need help. Have the best insurance but so many rules it does us no good. However if my Dad was in Welfare we would have had help yesterday. Not a fair system

Audrey Besser – Comment: I care for my mother-in-law.  I would be willing to brain storm a way to start a support group to help each other’s household to let caregivers have there needed rest and relax time, including sharing adult care .  Yes disappointed about the lack of support by family & society.

Joanne Gerrard –Comment: Caregivers need the help and support and respite that gives them the help they need to give the care their loved one needs.

Margaret Smith – Comment: Caring for others is a challenge. We could use help at times.

Sherie Lynn Anderson – Comment: I support the challenge.

 R F – Comment: As the mother of a 15 year old son with autism I wholeheartedly identify with this article.  Being a caregiver is mentally and physically demanding.  The caregiver is often isolated with little to no support from family and friends. Cheap advice is easy to shell out.  People don’t know and they don’t want to know.

 Note: I have not made any changes or corrections to these posts. They appear exactly as written.  Individual email addresses are not included. However, I have the original posts and can provide them to Dr. Phil and/or the Dr. Phil Foundation on request.

Contact Dr. Phil:

Dr. Phil Foundation  – http://drphilfoundation.org/

The Dr. Phil Show http://www.drphil.com/

Twitter @DrPhil

Facebook  https://www.facebook.com/drphilshow?fref=ts

**** Read a Related Post : Stop Telling Caregivers to Take A Break

 

 

 

 

Dr. Phil – You Let Caregivers Down and I Challenge You to Do Better

30 May 2015 3 Comments

by Bobbi Carducci in care giving Tags: , , , , ,

When I learned that one of the guests scheduled to appear on the Dr. Phil Show on May 26th was a young caregiver I made it a point to watch.

Featured in the later part of the show was a young woman named Stephanie who is a caregiver for her father who has had a massive stroke.  She wakes him each day, dresses him, moves him from bed to chair, and feeds him,tends to all his waking needs and then gets him ready for bed each night.  She does all this while attending college. She is a remarkable young woman.

She is an excellent representative of the millions of young adults and the millions of teens and older adults caring for family members every day.  It was wonderful to see any caregiver recognized on your show.

Unfortunately neither you, Dr. Phil, nor Dr. Freda Lewis – Hall, Chief Medical Office of Pfizer, did more than express your admiration and offer the same old advice caregivers hear every day.

Make sure you eat right and exercise. Get enough rest. Make time to be with friends. Don’t feel guilty for wanting time away. You must take care of yourself before you can take care of another.

 All true. Every caregiver knows this. What the advice givers, including you and Dr. Freda Lewis-Hall, fail to do is provide a way for all this to happen. Most caregivers would love to follow this advice if only they could.

Caregivers don’t need advice. Caregivers need help. They need family members to understand what they do every single day and not judge them or their care decisions based on short occasional visits.

Caregivers need regular respite care so they can follow the advice so often given.

Dr. Phil you let us down when you fell into the role of advice giver and failed to offer this young woman and the millions of other caregivers a way to follow it. I watch your show and I see you regularly offer gifts of counseling and resources for help in their local communities to people addicted to drugs and alcohol and to families dealing with emotional and physical abuse when their stories air.

Why didn’t you do that for this young woman?  You could have been a beacon of light for caregivers everywhere instead you let us down. Why?

Dr. Phil, I challenge you to use your huge resources and the Dr. Phil Foundation to develop a program of grants to help caregivers follow your advice to accept help, rest, and take care of themselves so they can continue to care for those they love so much that they are willing to sacrifice their health to for them. Respite care is vital for caregivers and you can help provide it.

 https://www.youtube.com/watch?v=lXR1PddbrfQ

If you support my challenge to Dr. Phil to do more than offer advice to caregivers please let him know via Facebook and/or Twitter and any other social media sites you use, and by sharing this post with everyone you know and asking them to do the same.

 

 

 

 

Good Morning Caregivers – Get Off My Mountain

21 May 2015 2 Comments

by Bobbi Carducci in care giving, caregiver, caregiver anger, caregiver humor, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues Tags: , , , , , , , , , , , , , ,

Many paths to success

Just as there are many paths up the mountain there are the many paths of caregiving.  How ours will twist and turn depends on the reason it began in the first place and how the one in our care responds to the many obstacles in the way. Will he reach for me to guide him along the way or will he insist on refusing my help only to fall and accuse me of pushing him?

Every day, around each new bend, we are faced with something unexpected. It could be a breathtaking moment when the air clears and the sun breaks through the clouds of confusion and he smiles. I feared I’d never see that twinkle again. “Thank you, Lord,” I whisper.

Far more likely it’s another loss making every step we take together more difficult. Our path is longer and far more arduous than we could have imagined. It is also the way that works for us. We figure it out as we go along.

 The last thing we need is “the one who runs around the mountain, telling everyone that his or her path is wrong.”

Unfortunately there seems to be as many of them as there are of us. If you are dealing with someone like that send them this Hindu proverb and tell them the Imperfect Caregivers says, “You are not helping. You are making things more difficult.”

GET THE HELL OFF THE MOUNTAIN

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Good Morning Caregivers – I May Not Be Perfect

20 May 2015 Leave a comment

by Bobbi Carducci in care giving, caregiver, caregiver humor, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues Tags: , , , , , , , ,

I may not be perfect

If I am able to help you understand anything by way of this blog or my book I hope it is this:

I AM NOT PERFECT AND THAT’S OKAY

We are human.  We become angry sometimes. We feel resentful when others go off on vacation or simply out to dinner and we can’t. We get sick and tired of hearing the same question over and over. We need sleep and get cranky when we don’t get enough. Our heart breaks when the one we are trying so hard to help accuses us of mistreating them or stealing from them. Or worse yet, don’t remember who we are.

Some days we want to give in, give up, and let go so badly we nearly fall apart. And then we feel terrible. We doubt ourselves and become convinced we are bad people.

We are not. We are the caregivers. We are not perfect. We are human. We give all we have and then give some more. Y

You, like me, are not perfect but no one is.  You are a caregiver and because of you the one in your care will have many more good days than he or should would have had otherwise.

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Where Have My Friends Gone?

19 May 2015 6 Comments

by Bobbi Carducci in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: , , , , , , , , , , , , , , , , , , ,

friend therapy

Being a caregiver for a loved one is lonely. From morning til night, and often well beyond, caregivers are on call even when our loved ones demand we leave them alone. We become the bad guys. The woman or man who insists they bathe when they don’t want to and serve them food when they have no wish to eat. Our parents or our spouses resent being treated like children. Their losses are devastating and they resent being reminded of them. Days go by when they don’t say a word. Some can’t. Others were told long ago not to speak to strangers and that is who we have become.

Knowing we are busy and often unable to leave the house our friends drift away. Not intentionally. It simply happens. They visit a few times only to find us distracted and harried, on constant alert for a call from our loved one or the sound of that horrible thump that signals another fall.  Sometimes we cry and then refuse to follow well intentioned advice to take time for ourselves and get enough rest. We aren’t as much fun as we used to be. I get it.  But still we need you. If only for a few minutes now and then we need you to come by and share a cup of coffee with us. We need a bit of adult conversation. Having a friend say, “Tell me about it,” and then sit back and listen as we speak is a moment of respite we cherish.

Please, even if you only have a few moments, be a friend to a caregiver today. Someone is waiting.


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Moment of Respite – A Dog Comes to Visit

18 May 2015 2 Comments

by Bobbi Carducci in care giving, Dementia, family issues, home health care, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, women's issues Tags: , , , , , , , , , , , , , , , , , ,

Dog give me strengthI didn’t know how he would react but I was ready to try anything to brighten his day and relieve some of the stress we were both feeling. His daily walks were a thing of the past. His diet was severely restricted and either he wasn’t sleeping well or he was sleeping all the time. Mike and I discussed it and decided to contact some people we knew who trained therapy dogs and request a home a visit. We had heard stories of how people in nursing homes and hospitals would smile and begin to share stories about pets they had when the friendly animals came to visit. Nurses and staff members reported that patients were happier and more alert for hours, and in some cases days, after they dogs left. We felt it was worth a try.

I wish I had a picture of that visit. I had let Rodger know he was going to have two visitors, one of them a dog. He was skeptical at first.

“What am I gonna do with a dog? I can’t walk no more. Who will clean up after it?”

“The dog isn’t going to live here. He’s coming for a short visit.”

“Why?”

“For something different. To help pass the time.”

“Do what you want. I hope it doesn’t pee on the floor.”

Rodger rarely smiled but when a beautiful golden retriever slowly entered the room and sat at his feet he couldn’t help himself.

After introducing herself and her dog, who was wearing a vest identifying him as a therapy dog, the volunteer sat quietly and allowed Rodger and Casey to get acquainted.

Shortly after the smile appeared Rodger slowly leaned over and tentatively began to pet Casey.

“Did you have a dog as a pet when you were a boy?” the volunteer asked.

“No. No pets. In the old country dogs are for working. Not like here where pets are spoiled.”

And then he began to talk. He spoke about life on the farm. For a while he went back to a time and place where he was able to walk outside in the sun and work up an appetite for homemade pasta and oven fresh bread. He sat up straighter and the light so rarely seen in his eyes made an appearance. I could feel my neck muscles relax as I watched the transformation. He may not have had a pet growing up, and to him dogs were meant to work, but what he didn’t seem to notice was that this one was working too. Casey was working a little bit of magic for both of us and for that I was grateful.

For more information on the positive impact dogs can have on loved ones with dementia go to:

http://www.alzheimersproject.org/About-Us/News-Photos-and-Calendar/Latest-News/Pets-and-Dementia

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Good Morning Caregivers

05 May 2015 Leave a comment

by Bobbi Carducci in care giving, caregiver, Caregiving, Dementia, family issues, home health care, Lewy Body Dementia, mental illness, nursing, sandwich generation, schizophrenia, Uncategorized, understanding dementia, women's issues Tags: , , , , , , , , , , , , , , , ,

An Army of One

Look around. Whom do you see? Women, men, teens, grandparents, spouses, sisters, brothers, friends, significant others.  Nurses, home-health aides, doctors, Visiting Angels, hospice care workers, social workers. Priests, nuns, ministers of every denomination. People of all races and ethnic origins.  All across the world, in every country, we are there. We are the caregivers.

Yet we are alone. Every story is different. Every caregiver fails in his or her own way. The guilt eats at us. The lack of sleep drains us. The accusations of neglect and abuse by loved ones suffering from dementia or brain injury haunt us day and night.  We feed and clothe and them. We bathe them. We cry for them and with them.  We love them. And some days we don’t like them. We go to battle for them and we beg for some time away.  We are part of you and we are alone.

My husband and I planned for the time when one or more of our parents would need care. We would bring them into our home and provide a safe, loving place for them as longs as it was needed.  It would be hard but hard is what life is sometimes.

Living with and caring for my father-in-law, Rodger, was far more difficult than I ever imagined.  I never suspected his quirky behavior was due to schizophrenia first diagnosed in his early twenties. A diagnosis long hidden from members of the family, including my husband and me. Not only had the disease affected his life but so had the years of powerful drugs that enabled him to function.  His memory and ability to reason were vastly diminished. Suspicion and paranoia made it impossible for him to trust me while I, innocent that I was, trusted him when he said he took his medication.

Although he lived for five years after his last psychotic break he never really recovered from it and the near fatal bout of pneumonia that he came down with while in the hospital.  After that came the heart attack, followed by surgery to implant a pacemaker. The pacemaker led to blood clots forming in his arm.  Blood thinners requiring regular blood tests caused him great anxiety.

“What is the government doing with my blood? Why do they need so much?”

My suspicion that he was developing Parkinson’s disease was deemed incorrect until months later it could no longer be denied. It ran in his family and his sister had recently died from it.  He needed a walker and could no longer use the stairs. Severe swallowing problems meant pureed food and thickened liquids made up his diet. I learned to cook food that tasted good and offered as much nutrition as possible but even I had to admit it looked awful.  Dementia came next bringing the phenomenon of sundowning along with it.  No one slept much once that started.

When people learned I was a caregiver they would say they understood. Some may have, on some level. But, I knew deep in my heart that they could not really know how it was.  How could they?  His life was his own. His back story defined who he became.  His history of illnesses was as convoluted and complicated as his mind.  He needed so much. What he got was one woman, part of a vast army of caregivers who tend their loved ones alone.

Some Caregiver Statistics from The Family Caregiving Alliance

Who are the Informal Caregivers?

Although there may appear to be wide discrepancies in estimates of the number of informal caregivers in the U.S., the figures cited below reflect variations in the definitions and criteria used in each study, e.g., age of care recipients surveyed or relationship of caregiver to care recipient.

Magnitude

  • 65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged. [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012
  • 52 million caregivers provide care to adults (aged 18+) with a disability or illness. [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1] – Updated: November 2012
  • 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer‘s and Dementia , Vol.7, Issue 2.] – Updated: November 2012
  • LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21% vs. 17%. [MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers] – Updated: November 2012

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