8 Things Caregivers Need
It’s not uncommon for spouses to decide to leave when the other gets sick. I think it could be a matter of “having had it up to here” and then finding out the one you’ve “put up with” for so long now has a condition that will most likely make your life — and theirs — a lot more difficult. Parkinson’s may change the relationship between a married couple. Bonds between a father and son. Between a mother and daughter. Friends. It comes in and subtlety takes away the ties that once bound these relationships together.
The PD patient changes. They are physically familiar, but mentally and emotionally, they’re not the same. And the caregiver is left struggling with how to deal with this new role in life: taking care of someone else while taking care of themselves.
If you are a caregiver to anyone, first of all, thank you for your commitment and sacrifice. You might get hit, have to change yet another big girl or big boy diaper, clean up another spill, or wash another naked body, but we (your charges) appreciate you more than we might be able to say or show.
Following are eight little things you can do as a caregiver that will hopefully, make your role easier:
• Breathe deeply and when you get one free minute, do one thing that puts a smile on your face. Go out to the garden and breathe in the fragrance of a rose. Put on encouraging music. Read a short devotional. Fix a cup of tea. Scream. Screaming is highly underrated.
The Parkinson’s Disease News Today forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!
• Don’t focus on the what-ifs. They’ll defeat you most every time. Do focus on “now.” It may seem like a tremendous struggle at the moment, but things could be worse. Today may be one of the harder days, but when the clock strikes 12, it’s a new day. Something wonderful could be ahead, waiting to happen. Your patient may turn into a pumpkin! Don’t lose hope.
• If you don’t have one already, get a sense of humor. Without one, you’ll often despair. Find something funny in every day. You need to laugh.
• Get yourself into a support group locally or online. You may not think you need it, but you do. Especially as the road becomes bumpier. And it will get bumpier. Get some support in place now, as it will make things easier to deal with later.
• You need your friends. Don’t alienate them by thinking you can do this by yourself. Accept their invitations to help. Accept an hour off, washing the dishes, picking up some groceries, dropping the kids off at practice, or cooking your family a meal. Give yourself some slack and let your friends feel needed, because if they are offering to help before you have even asked, they may see your need better than you can.
• Try to think ahead. Your loved one’s mental faculties may not be so great anymore. A daily schedule may be useful, with a reminder for doctor’s appointments, visitors, special occasions, etc.
• Don’t beat yourself up. There will be good days and bad days. You may have more bad days now due to your new, unwanted role. And because this admittedly is an unwanted role, you feel like your life has been swallowed up along with the one you’re caring for.
You have thoughts of packing it in. Giving up. Throwing in the towel. Walking away and leaving the patient to fend for himself or herself. You’re tired, weary, spent, worn out. You want it to end and you feel guilty for thinking and feeling the way you do. And it’s OK. It’s normal. You’re caring for the one you’re grieving, while at the same time grieving what you’ve both lost already and what you could very well lose still. It’s OK to be frustrated, to go outside for a reprieve and scream. It’s OK to let the tears flow. Just remember: The one you love is in this fight with you, not against you. They just aren’t able to fight as they once did. Try to remember them as they were 10, 15, or 20 years ago when you laughed together and lived life together.
Also try to remember that if your husband could get out and mow the lawn again, he’d do it in a heartbeat. If the wife you care for could brush her own teeth and tie her own shoes, you’d both be ecstatic. Whatever you’re losing, they are losing as well. They’ve been dreading the days to come with a vengeance.
If they could, the one you are caring for would take this bitter cup from you. However, that cup may one day soon be empty, so enjoy it now while there is still some liquid left, even if sour at times.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Jan Hayes
Caregivers also need to be flexible. There are many things that you used to enjoy that can still be done with a little change and adaptation. Be open to small changes to activities that give you joy.
Also be careful about support groups...some are whining groups. If they are not constructive they will bring you down. A good support group always has new ideas that can make life more enjoyable.
Sherri Woodbridge
Jan - thanks for the great insight!
Jan Chido
I have a good friend whose husband is experiencing Parkinson's related psychosis. He's constantly accusing her of horrible things and she needs some help.
It's really weighing her down. Any suggestions for online support groups for caregivers?
Don Rothschild
As her caregiver, it's a time in my life, at 88, that I can give back that which I've received over our past 65 years we've been together. What a blessing!
Sherri Woodbridge
Don - what a great attitude you have! Your wife is blessed!
Cheryl Hughes
Amen! These are so important. Find a good blog like this one that will encourage you!
Sherri Woodbridge
Thank you, Cheryl, for your encouraging comment!
Sherri Woodbridge
Thanks for your comment, Cheryl!
Judith Michael
My husband was diagnosed with Parkinson’s almost 16 years ago, and in the last couple of years, it has reared up to show it’s true colors. My heart aches for the man I married 56 yrs ago! I will not give up on him. I find myself making decisions we once made as a couple, and doing chores he once did. While the physical aspects of the disease have been difficult and challenging, the mental aspects have been even more so. I will not give up, as we vowed “Until Death Do Us Part”! I am curious to find out how others are coping.
Sherri Woodbridge
Hi Judith - I’m sorry to hear about your husband. This disease is a booger! I applaud your attitude. I would suggest if you’re on Facebook, getting in a support there. There are many to choose from and they are all very helpful. I will see if I can send you a few links - if you’re on there - or you can get hold of me on there - sherri woodbridge
Janet Schechter
Please send me the links for the caregivers support groups. My husband has PD. I would find them helpful.
Beverly Altman
Please send me the links also
Judy
Please I would also be very interested in some of the links as my husband also has PD. He is 71 with neck and back problems as well so is unable to go for even a short walk around the block. My husband is my world and watching him slow down is so very hard.
Toni
Sherri, I too would love the links to find a local and online support groups. My husband of 30 years, 67 years old, has had Parkinson’s since 2007. He was always very active, running, exercising, playing golf, swimming laps, helping with the chores etc. he retired 2 1/2 yrs ago. About 3 years ago a He completely stopped doing everything. He had the DBS 3 1/2 years ago and it has helped. All he does is read his kindle, work a word search puzzle, lay around all day. I work 2 jobs, 1 from home, 1 is a split shift as a crossing guard, so I can be home with him if he needs me. It’s hard to see him go from an active person to a person who makes excuses to not do anything. The most walking and getting out he does is when we go to the grocery stores. We loved getting out and vacationing or going out to visit family. Going anywhere is a chore, wears him out, then we may get into a disagreement. I’ve kept in the hate of this disease and what it is doing to my once masculine and active husband. Sometimes we go to see our son who lives 3000 miles away. He is active and loves to hike. He took us on a hike that he thought was easy. It was not. Halfway up, my husband starts with the paranoia and fussing to me. I finally fussed back. Our son pretty much banned us from staying with him now because I caused a scene. I really need a support group to find others going through this and how they stay calm and solve issues. I would love to find people who are in the same situation I am.
Gloria
My husband was a police officer for twenty years and in private business for the next ten years after this time he did odds and ends. He had back surgery and has never been the same. Now he has been diagnosed with Parkinson’s. He can’t walk, can’t make it to the bathroom ! I’m constantly cleaning up after him. I pray for patience, but most of the time I just cry until I can’t cry anymore. He refuses to take his meds on time and thinks it funny when I remind him. I’m at my wits end. We have been married for 52 years and it’s so hard to see him disappear a little each day. I just need to chat with others who are going through the same difficulty.
Jen
My husband has Parkinson’s and he is much like your husband. Just been on holiday and all he did was lay down most of the time,. It was hot so that was exhausting for him. He dosnt talk much now so I’m finding that very frustrating. Same in company. I’m finding I’m doing most of the chores now. He can’t get his head around doing most things. He gets up around 10.30-11 or later. We walked and hiked a lot but that’s finished. He is getting thinner and I’m getting wider through sitting down so much with him. He just about makes himself toast if I refuse to make his lunch. I’m just testing him to how much he would do for himself. He does say I’m his rock but rocks can crack sometimes
Meredith
I relate. Looking good for awhile then unexpected blowup episode. . Unless you’re living with this insidious disease there’s minimal understanding. The PD patients frustration regarding loss of life’s quality is heartbreaking. God bless caregivers and those who they care for !
loss is heartbreaking… they know. My heart breaks for friends/family. ❤️
Melissa
The hardest thing for me is the emotionless, I miss our closeness
Melinda
Not well.
Angela Babin
Hello, My name is Angie. My husband and I have been married 41 years and dated for 2 years before. He was diagnosed in November 2017 but had signs, symptoms and tests for everything but Parkinson's for a year before, but the Doc's tested him for everything but Parkinson's. Left side weakness, put him through all the heart related tests - all were normal plus MRI, Cat Scan, EEG, EKG, ABI, X-RAYS, Ultrasounds of legs, heart and so much blood work . . . all normal???, finally a DAT scan revealed that it was Parkinson's. He has received PT, OT and ST.
Through it all, I remind myself of the vows I made to this man who I dearly love. In sickness and in health, through good times and bad, till death do us part . . . It takes a toll on us as caregivers, this 10 letter word C A R E G I V E R has a vast amount of responsibility attached to it. It is a dedication and determination beyond anything you are ever prepared for. I try to keep things happy, I put him in he car and bring him to places we went to when we were young and we can count on both hands those that are still around. We both like to watch horses, cows and baby calfs and live near some pastures where they graze so we'll go ride there some times. WE used to enjoy eating out but he is unable to do that anymore and then there's this COVID thing. We pray together allot more now. I try to get someone to care for him for me to get away just to have some time for myself but those times are few and hardly ever happens, just to shop, a short visit with a friend, a manicure or pedicure, or just a ride in the car. Of course, knowing he is longing for me to be at his side the whole time I'm gone is not easy. I wish there was a place around me where he could feel comfortable and enjoy going. My children help some but both have multiple children and responsibilities of their own. As for me, coping with lack of sleep, struggling with handling him, transferring him from bed to wheelchair, diaper changing, cleaning him up, preparing mashed foods for him, dressing him, giving him his meds, bringing him to all his doctor's appointments and tests, always aware that he could fall again, praying he will not get hurt and I would have to help him off the floor, and just doing every little thing for him, well it just takes a strong willed person just to keep your spirits up. But hang in there, it could always be worse - you could be alone and bored. I have no idea what that means :) I find that being thankful for what I do have helps, I am blessed with good health, I know how to cook and clean a mess, I like to sew and I get to do a little of that, I have grandchildren that are so special and beautiful to us, I have a roof over my head and I keep in mind that I am special and thankful that I am here to bring comfort to my suffering husband in his time of need :)
Stephen Bindel
Thank you for what you said . As I have people saying that my wife cant give me what she doesnt have . But I know shes still there . It just takes a lot to bring her out . But like you I will not give up . As I know she wouldnt give up if it was reverse
Janet
Hi my husband was diagnosed with parkinsons 3 year's ago now. But I think he's had it longer. Lots of signs that something was wrong. I find things very hard we argue more now than we ever did before parkinsons. He doesn't know what he's doing most of the time so I try to help but he gets mad with me. So I leave him alone.But then he starts going on and on about it.
He sleeps a lot too. And gets up early. If I say anything to my daughters they just say he can't help it no help there.sometimes I feel like bashing my head on a brick wall. Bu I love him been together since we were 16 married 45 year's now.
Sherri Woodbridge
Janet - My heart goes out to you. This disease takes so much more than independence and physical ailments. So very much more. May you find the comfort and support you need and strength you need to carry on each new day.
Lori
We’re waiting for the appointment in Dec I made it a month ago that’s the soonest we can be seen 2 different medical professionals have said their pretty certain it’s PD the closest PD facility is 3 hrs away, out of the list of symptoms there’s only about 3 my husband doesn’t have and like another poster I think there’s been symptoms for Quite some time but just thought it was severe anxiety, my heart breaks thinking about the progression of this disease and mentally and emotionally losing the man I’ve loved for 30 years, we’re on the cancellation list but I’m sure there are many others on it as well any suggestions on how to get in earlier is greatly appreciated
Liz
My husband was diagnosed with Parkinson’s in November of 2018. He just turned 72. Physically he seems to be doing pretty well. He has slowed down a bit, but is doing ok. Right now my major concern is his memory. He asks me every day what day it is.
And he doesn’t know what month we’re in. He’s constantly asking the same question or repeating the same statement. It’s really frustrating for me but I’m trying to be patient. He’s the love of my life it’s very difficult to see the change in him.
Sherri Woodbridge
Liz - i hope you can find some help and some hope here very soon -
Laisa
I am as well as carer of my auntie. Its a challenge for me sometimes to make her understand what I am trying to tell her especially on safety issues but she would always end up passive if not mad over us because she feels like we're taking away her independence and us getting frustrated about it. I wanna learn more on the right approach and strategy to deal with this.
Sherri Woodbridge
What a blessing she has in you!
Sharon
My husband has developed rage and anger issues. Has left one AL facility, tore up another. He is now in a geriatric psych hospital that can hopefully find the right mix of meds to calm him down enough for him to remain in the new facility where he will go when released. This one is probably the last chance. If he acts out and they won’t keep him, don’t know what I will do.
He had had some flashes of this, but it has escalated in the last two months.
He can barely walk when his PD meds are running out, but he somehow has super human strength when theses violent delusions happen.
Has anyone else had any experience with this? I expected physical problems and some cognitive ones , but nothing like this.
Donna
My husband, 68 was diagnosed with PD four years ago. Has pretty much watched tv for those years. Won’t do puzzles or memory games or kindle. As of about 2 weeks ago, he has taken a drastic decline. He’s very agitated and angry. Has started reminiscing and repeating stories and harping on the past. He has gotten insulting to me and then apologizes the next day. We were already contemplating divorce when he was diagnosed with PD so this is not easy. I have two jobs and our son in college. I wish the doctors explained the stages better or even acknowledged there are stages. I too would like to find a support group but I’m not on Facebook. Any suggestions? I’m around Naperville, Illinois. Thanks
Sherri Woodbridge
Hi Sharon - so very sorry to hear about your husband. Try starting here:
https://www.apdaparkinson.org/community/midwest/resources-support-mw/support-groups/
Let me know how you do...
Jodi
Hi Sherri, my name is Jodi Alfieri I am also a caregiver of my husband that has been diagnosed with Parkinson's disease in February 17 of 2019 . He has went from walking with a cane to now he is using a motorized wheelchair. I'm looking for a support group in the Cincinnati area but if you don't mind I would really like to keep in contact with you and become friends on Facebook if that's ok. I'm 44yrs old and my husband rob is 54 yrs old we have been married for 13 wonderful yrs. And have a 4yr old son. Thanks for your time hope to talk to you soon. Jodi Alfieri
Sheryl
So how does one find an online support group as a caregiver?My husband was diagnosed 3 years ago with PD and we live in a rural area and are too far from the nearest support group for me to participate.
Sherri Woodbridge
https://www.facebook.com/profile.php?id=792887667441765&ref=br_rs
Hi Sheryl — try this link to a support group on FB - let me know if it works or not
Angela Babin
Hi Sheryl,
I'm Angie and live in a rural area also. Sometimes I feel trapped and I get him settled and take a walk outside, sit in my rocking chair and pray for peace while I look and listen for a bird to sing or a butterfly to go by. It is a hard fact to realize that I am my own support group :( I've cried about it, got mad about it, but it doesn't help or change anything. So I make an extra effort to get past myself and try to find joy in giving and comforting because that is such a special thing :)
Verona larkins
My husband has Parkinson's was diagnosed about four years ago,at the age of 60. He was always in prefect health,no one would of ever thought he would get should a terrible disease .there isn't anything the same in our life's ,he is very forgetful,he can do his person care for now ,but I don't know for how long this will Last.I don't have anyone to help me,It's like being a pirsoner in your own home.im 62 and my health is starting to fail,because of stress.I pray for everyone with Parkinson's ,it's just now fair.
Rose Marie Swensen
My husband is doing a sleep study and checking for Parkinson's this month... He is driving me crazy... And yes I am ready to throw in the towel.... But I feel like I need to help him because No one else will !! It is hard....
Sherri Woodbridge
Yes, it is hard. I hope you find some answers!
Betty Mccracken
My husband has recently been diagnosed with Parkinson’s of which has been suspected for awhile. We finally found a Dr that sent us to a neurologist. Which confirmed my suspicions. This is A very difficult thing to come to terms with. We are struggling but I am determined to help him as much as I can, it is a daily struggle to be patient with him when he seems to be giving up and into this debilitating disease.
Edna Culp
Hi Sherri,
My husband was diagnosed with PD 21 years ago when our daughters were 2, 6, and 8 years old. He was 50 y.o then, I was 38. Currently, he has Parkinson's Disease Dementia, last stage of PD and is full care. I chose to care for him at home. I am pretty much a single Mom and taking care of him. For the longest time, I looked for a support group attended by spouses like me who is not retired, still in the work force, still raising kids, and meets after hours on WD or on weekends. No luck not even when I asked the help of the clinic, providers, and social workers. One night when I was at my lowest - youngest left for college, I hit rock bottom. Surfed the internet and found Well Spouse Association, sole non-profit organization serving and existing for the benefit of spousal caregivers. I attended the national conference and joined a support group. Their motto: "When one is sick, two need help." I share this with you because I appreciate your article "8 things a caregiver need" and read the comments from the readers. Like me, a lot of them are hungry for support and resources that they can grab and hang on to for dear life. I don't know if you have heard of Well Spouse Association (wellspouse.org), established in the East Coast but no presence in the West Coast so I made a commitment to myself to bring awareness of its presence in the West Coast because I know it is a much needed by people like me. Caring for a spouse or partner is different from caring for a parent, sibling or a child. Some of our issues and concern cannot be discussed in a mixed setting. What of sexuality and intimacy especially for the younger spousal caregivers? We need a safe and supportive and caring environment to share these thoughts and issues. I know I am rambling but I am wondering if this is a resource that you can point your readers to go when they inquire about support groups, etc. I also attend a PD support group for caregivers but I can't help but notice that invariably discussions still focus mainly on the ill spouse (with PD) rather than on the caregivers even when it is a caregiver support group. Please feel free to contact me if you have any comments or concerns. If this is no value to you, please just ignore the ramblings of a caregiver still on this lonely, difficult spousal caregiver journey who tries to find the blessings along the way.
Sherri Woodbridge
Edna - thanks for your thoughtful and informative comment. Hopefully others will see it and be encouraged.
Julia
My husband who is 19 years older than me was diagnosed 12 or so years ago. It has been hard going through the stages (no one explains). He has been experiencing psychological problems for a couple of years, now they are getting worse. He accuses me of all sorts of things. My worst fear is that others will take him seriously.He’s now 79 and I’m just 60. We’ve been married for 30 years, but his family won’t help, and I don’t have any family to help. Sometimes I rage, sometimes I cry, other times aI’m just paralyzed with fear. It’s so lonely, he can’t hold a conversation anymore, and mostly doesn’t understand when I try.
I have to do everything, with no help from anyone. The neighbors won’t come around for fear of being asked for help. I’ve learned people are basically shitty. They just look away. Our house is falling apart, I can’t keep it up alone. I’m at the end of my rope, literally. No one cares what happens to us.
Phyllis
Julia,
My heart breaks for you. I am in the same situation. My family does care and tries to help when possible, but they live two hours away and have their own burdens to deal with. Are you able to hire help for some of the household cleaning, yard maintenance, etc? I have hired people to do some things around here. I've always prided myself on keeping my own home up, but things started falling apart. I want to focus on caring for my husband as much as possible. I can't imagine my mind being in a state of confusion and not knowing what I'm doing or what is going on or who the people are around me, and on top of it, can't move much or do anything but exist in a state of stupor. Better to be the care taker, hard as it is. Consider talking to a pastor. I do have conversations with God at night when he is asleep and I'm not - just laying there giving Him all my gripes and sorrows. It does help.
Would you consider moving to a smaller home or apartment with less care? I love my home, but it looks like I will have to sell and move soon. I am your friend. Let's keep in touch here on this blog.
Carmen
Hi. First of all I am so sorry that there are so many people going thru these situations. My dad was diagnosed a few years ago but the last three years have been just so so bad. He is bed ridden so mom does everything for him she used to be very active loves spending time with her plant. But they are all dead now. She loves him so much but he is so so demanding and she is there. She is no longer active and no longer with her plants. He doesn’t want her to leave his side. The biggest problem is that if she does do what he wants just so he starts accusing her of horrible things and calling her horrible names He started talking about separating. But who will take of him. Mom isn’t giving up on him. But it is so so hard to see and hear these terrible things he does and says. She tries to explain things to him. But he don’t want to hear it. They both call me to listen and advise. But it’s so hard for me too cause I love them both. Don’t know what to do or how to help.