Hi Friends, please weigh in,I really need your advice. Since after my PD diagnosis. I noticed my DW was shaken and afraid. She reluctantly went with me to the neurologist for initial visits,and later to the psychiatrist.After the two visits,she stopped, saying she does not like to listen to bad stuff during my meetings with the doctors.Since then I have been visiting my MDS alone,with my teenage kids or my elder sister,who is in her early 70s. I have been treating PD for roughly 4 years and almost in my mid 50s. I have always been the bread winner,even after I stopped working due to my excellent savings. Recently,I suggested that we should downsize and opt for a lower rent accommodation,since she is the only one working and my savings is gradually depleting,but she refused saying,she would like our last kid to graduate from our township high school,just like the elder sisters did.Our last kid currently has two more years to graduate. My DW knows the status of my account, and that I cannot afford to renew our lease which would end soon,but she insisted that we should secure a loan from family members to pay our future rent. She is not a saver and I am one.
I sought an advice from who suggested that I should ask a church elder to talk to her,maybe she would listen and start supporting me.I hope,if I take my sister's advice,my DW would not be more upset. In as much as I don't want to be seperated from my kids,I am also afraid of my PD future. What do you think?
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OREOLU
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If you are in your mid fifties, aren't you eligible for disability coverage if you are no longer able to work due to PD? That would certainly be a useful way to boost your income without having to borrow from family to pay the future rent? If you soon will not be able to afford the rent where you are, how will you ever be able to repay the loan?
Hi Chartist, thanks for your input, I am about to downsize,so as to be able to afford future rent,you move to a cheaper rental apt.And of course,I am also counting on my LTD coverage.
I would encourage your wife to attend a Caregiver Support Group. The members can give her insight about their experiences and she could very well learn from them the need to change gears and look forward to the future and both of your needs.
Caregiver meetings are only for them. People with PD cannot attend. It is different than normal support groups where both partners can attend. I encourage you to go to meetings alone. It will help you cope and maybe learn ways to improve the situation. It sounds like she is in denial and wants everything to stay the same. She needs to learn to prepare for the future.
Hi,you are probably right. She is in denial,but for how long,I don't understand.She thinks every challenges in life is spiritual.I often get frustrated that she doesn't seem to see the real picture. I will attend meetings alone.
We have had meetings with the pastor but I have never brought the issue during our meetings,she would not tell the pastor either.I might have to do that.
I take it she uses this as a way to remain in denial, rather than sincere interest in using spiritual practice to address physical ailments. In my experience miracles can happen but usually it takes major dedication to get results.
She's scared. When my husband and I first got together, it was about a year later when he was diagnosed with PD. There is no way I would not support him, as he would me. He is a wonderful man, and I will fight to keep his PD under control, forever!
I think that you know what you have to do. You just don't like it and I sympathize with you but the longer you put it off the more dyer the circumstance becomes. Your wife is living in a fantasy that includes your money but not you. It is unfortunate, but you have enough to focus on your PD and will in the future need some help and It does not sound like you will get it from your present partner. Time to review your plan , future financial, suitable housing, reduction of stress , daily exercise etc , you know the drill.
Give her one opportunity and ask her pointblank if she wants to be part of it. Go from there.
Hi GymBag, I understand where you are coming from. All the options,I get from kind and supportive friends like you and others on this thread would be applied,then I will see where it goes from there.Thanks a lot.
Oreolu, I think gymbag is right. Somehow, someway you need to get her commitment to a future together or not. This is particularly scary for you knowing you have this condition but not facing the situation now just postpones the inevitable and puts you in a worse situation. You may need to clarify your thinking with a trusted other and it would be good to get support anyway before you discuss it with her.
Hi Hikoi, I worry about this everyday,I will discuss with a trusted other,someone whom I think she will listen to,before I lay it down on her feet. Thanks to you.
It makes me angry to hear your story. While I don’t know your relationship status, I can’t imagine a loving parter refusing to help because she simply doesn’t want to “listen to bad stuff.”
Have you challenged her with how that makes you feel? Does she not understand that things could get a lot worse with PD? It seems you gave her an out for her shared feelings but you will have to sit down with her and confess how hurt you are to see her being unsupportive and tell her that you’re more shaken and afraid than she is. See how she responds after you lay it all out. Let go of your pride and show her your vulnerability. Regardless of a third party intervention, you’ll need to have a tough discussion with your wife.
Also, can’t you downsize in your current township? Ask your wife how such a loan could be paid off if you stay and declare that no you can’t impose on your family for such a loan.
Hi rescuema, I asked her three days ago,if she still cares for me,the answer was yes.I have not vividly talked to her after I did when she decided to stop going to the doctor's appointments with me. I am going to do that again before my next appointment in about 2 months from now. I hope she would change her mind and start supporting me,before I involve a third party. Thanks for your concern and support.
I have found, regardless of the chronic disease, women seem to take a greater interest, and in my case, be a little bossy, about taking supplements, and doing the treatments that will keep my husband well. Let her know that you need her. Let her know it will be hard for you to go it alone.
Hello, and thank you for posting this! Some people just have a really rough time, being around somebody with a life-altering illness, like PD. My brother has COPD, and digestive problems. His wife has never been able to deal with anything to do with sickness, going to Doctors, and can’t bring herself to take care of, or help, when my brother is sick, and could use some help. One time, my brother had a knee replacement operation, I went to his home, to help him, when he needed it the most. His wife just doesn’t feel she can help at all. They have been married 35 years, and this has always been a problem. Other than that, they get along good, about everything else. So, I can relate to how you feel. I have been diagnosed with PD, and Cerebellar Ataxia, and my wife is in heart failure, and kidney failure, so, essentially we try to care for each other the best we can. Essentially, though, I am my wife’s caregiver, and, when there are times when we both are not feeling well, my daughter steps in, to help. So, from that perspective, it sometimes can get rough, for both of us. We have had to downsize, to a smaller place, with a lower rent than where we used to live. Also, we’ve had to adjust our spending habits. We are both retired, and elderly, on fixed incomes. Our church family has been extremely supportive, and several elders have reached out, and offered to help. That could be a way for you to get good advice. Usually, PD is a slow-moving ailment in the early years, and doesn’t progress nearly as fast as some other neurodegenerative diseases. However, that isn’t always the case. Each person has a unique number of symptoms, and progression, so I don’t believe categorizing progression and symptoms, can be the same for everyone, diagnosed with PD. Naturally, we are all somewhat fearful of an uncertain future. So far, I’ve had lots of ups and downs, but Sinemet helps a lot with alleviating most of my symptoms. Most of the time, I don’t need help, but there are times when I’ve needed help. I have learned that worrying just makes me lose more sleep, and is counterproductive. With the arrival of the COVID-19, the whole world seems to have turned upside down. My wife and I have self-isolated for several months, now, and keep our fingers crossed that we, being vulnerable, will not get the virus, or have to go to the Emergency Room/Hospital, for anything. I am fearful for my wife and for my future, too, but we take each day, one at a time, and try to immune boost our diet, and do range of motion exercises, each day! I hope you’ll be able to find a way to adjust to the problems you are having, and that, in the long run, everything will work out for you, and you won’t need to be as fearful, as you seem to be, now! Please keep in touch, and let us know how you are doing! This is an excellent blog/forum!
Hi ddmagee1, I read your post and I see that you know exactly what I am experiencing. I hope she would have a change of heart after a serious talk with her. I will definitely keep in touch. Thanks for your support.
I feel your pain. My husband (ex) does not acknowledge that I have PD. However, my Neurologist, Parkie Nurse and Exercise Physiologist confirm the diagnosis.
He spent half of the initial meeting we had with the Parkie nurse getting some food. He tells people I do not have a problem. I wish he was right!
When my wife was thinking of giving up and tried to leave me, i held her accountable to honor her vow of for better or for worse and laid a ginormous guilt trip on her. I refused to let her leave. I got really mad at her on the inside and plotted her doom in my darkest depths. This angry though process went on for years, but the good news is that I have recently forgiven her in my heart and we're still together and actually happy. Just my story, not advice!
Hi bassofspades, I understand,but can you really force someone to stay,if they want to leave?But I will try and encourage her,mybe she will feel guilty too and change her mind.Thanks for your input.
The only thing harder than getting someone to leave when they don't want to leave is getting someone to stay when they don't want to stay. People can be selfish, and that was the reason she gave me when she tried to leave me . That she wanted to be selfish. That's why I was so angry. If it were her that got pd, which isn't the worst thing you can get when you consider it could have been a big stroke or als, i would have certainly not have left her. I would have been there to take care of her.
I guess a lot of it comes down to how you were raised and what kind of family you came from. In my wife's case, her parents were very selfish people and i see selfishness and self centered people in her extended family too. Whereas my immediate and extended family is the opposite.
Plus some people just aren't strong enough to handle a family crisis. Plain and simple .
Being a PD caregiver is a tough , tiring, life destroying job that she did not sign up for and may not be trained or suited to. Appreciation, guidance and understanding by you are necessary . Get in touch with other services that may augment the care giver. Try to be happy, do not share every ache and pain and make sure she has a life. The situation changed and if she cant do it, she can't do it, end of that chapter and on to the next.
Go to the top right corner of this forum , beside the magnifying glass and search marriage . There are hundreds of posts . Happy, sad , good and bad. I and my wife celebrated our 50 th wedding anniversary on the 9th of May. I am a very, very lucky man.
Hey, we just celebrated our 49th wedding anniversary on May 9th also. My husband has PD and is very depressed. He crys daily. Can't accept it and keeps hoping for a cure. He is 72. He is going downhill fast. I have to help him up from a sitting position most of the time. He needs help getting up from his bed several times a night. Asks me to cover or uncover him. Even turning over is something he often has a hard time with. Its been only 5 years. Does it usually deteriorate so quickly ? He is on one Selegilene a day and Sinemet 25/100 , 3 times a day. Is there another drug that might help him? Does anyone know?
I am not suggesting he take my meds. but I am suggesting that he is under medicated and should immediately see his Neurologist (if you can not get an appointment send the doctor emails , phone calls ,telefaxs and explain your husbands symptoms )and if there is no improvement get another doctor . The severity that you describe is unnecessary and immediate action is called for.
So happy for you, GymBag, and congrats on your golden anniversary. I will celebrate my 48th wedding anniversary this October. You are right, care spouses' life can be exhausting and frustrating, especially if he/she lacks cooperation from his/her PD partner.
Hi Gymbag, I do get your point. I sometimes think about all you said. And I will do more research. I do feel for caregivers too. Congratulations on your marriage,you are such a lucky man, Thanks again.
I reply. I have the opposite problem. I am the caretaker and my husband is in denial of his PD. I have to drag him to support groups. I'm frustrated that he won't try to improve his situation. Being recently retired it would be nice to travel and enjoy these years but he doesn't want to use a wheelchair or scooter to make it possible to go anywhere. So we sit at home. It makes me wonder what she is thinking does she think that you have given up. Remember this is her life too. Decisions you make affect her hopes and dreams as well. She's now the breadwinner and she's responsible for the family and doesn't want to uproot her children. I'm wondering what compromises you are willing to make. Being a caretaker and the breadwinner is also very stressful and most of the time affects your health. Sounds like you need a financial counselor to help you get these kids raised
Unfortunately as is usually the case both parties are suffering and have legitimate complaints. The situation is often not sustainable and that is why It must be brought to open discussion . She is not evil or thoughtless or selfish for not wanting the caregiver position nor is he for needing to plan a life that he can endure.
There is a phrase "Reality sucks" and that too is reality.
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