As a spouse and primary caregiver who rarely posts, I am so frustrated by this disease and how quickly it advances. I thought I was losing Bart yesterday when he aspirated and passed out. He does this regularly but this was more severe and much more came up. Fortunately????? or not he is unaware of passing out. In addition, he has chosen not to alter his diet for safety and he chooses not to seek therapy (he says he has me and I am an OT by trade). Everything is declining and yet I feel compelled to work full time for insurance and to allow for meeting all his medical needs. So, if anyone has a magical wand please pass it this way. I would be happy to use it. I hope evryone is having a happy and fairly healthy day.
Krista
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CanAmK
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I’m sorry. You are caught in a horrible position and those of us who are watching MSA eat away at our bodies are not always logical in our responses. Your post is a salient reminder to each of us to try to spread the load and not rely exclusively on our spouses. In the absence of a wand (which I seem to have mislaid!) I can only offer heartfelt admiration for what you are doing every day and a great deal of sympathy.
Thanks for the response. I feel as though this group is like a family and that only we know what the other is going through. I appreciate your support and wish you the best in your health.
I'm so sorry you and your husband are going through this. Sadly there are no easy solutions or answers when it comes to MSA. My husband passed away just over a year ago after 7 years of living with MSA and he too resisted most support which made it very difficult to manage. I too had to keep working so I fully understand the pressures of working full time whilst being a carer. It's a juggling act which can cripple you emotionally as well as drain you physically, all the while knowing your spouse is in emotional pain too trying to manage their daily struggles.
The main turning point for Paul accepting a modicum of help was seeing me struggle as his carer as I felt I had to be honest and tell him I wasn't able to manage. Lots of tears and much chatting and reasoning on omy part ver a reasonable period of time helped us reach a compromise where I could enlist him support with a walker and and later wheelchair whilst still trying to help him retain some independence.
My go to reaction in the early days was frustration, becoming angry because he refused help but it wasn't the best approach because it left us both feeling upset and heightened the desperation and powerlessness we both felt. He also retreated even more emotionally which left it fractious for us as a partnership. Being honest about my capabilities and limitations and sensitively explaining my fears about him hurting himself through falls and the longer term consequences of that was a better approach.
I did have to draw the line firmly but calmly when moments came that his refusal for help put my physical health at risk and he allowed for a starlift at that point.
I'm glad you find this forum reassuring and a help. I found it was one of my main sources of support and couldn't have managed without it. Knowing I wasn't on my own and there were others who totally understood how I was feeling was a game changer for me.
I wish you all the best and please make sure you have some emotional support for yourself as it will help to get you through.
I feel the pain for you as it is so difficult for us all.
The condition affects us all in many many ways and that makes for difficulty in accepting the position both sufferer and carer are in.
The hardest part for the sufferer is acceptance that this condition has robbed you of life and will rob it even quicker if you do not accept and plan.
For the carer is has also robbed you of the life you was expecting for you both and also you want to cure , but all you can do is watch and help all you can. But the warning comes that this condition can impact the carers health and fitness also, as we are not superhuman.
How do you solve this....... I wish I had a magic wand but I don't, everyone and each relationship is individual so getting over the massive hurdle of accepting that this condition is here to stay and you both need help is the biggest one to cross, when you do then it will get easier.
Sue and I are now over 12 years into this condition and we are still here....
Talk, Talk, Talk is all i can offer and maybe get a professional involved to chat to you both may also be a way. Sometime facing reality head on may help...
Thank you Nic, Paul& Sue. It IS such a draining condition isn't it. I actually am not frustrated with him because of his choices. I am glad he is able to make choices for himself. Just frustrated at no weapons to fight this with. I think you both point out that fatigue definitely impacts my ability to care for Bart at my best. I am guilty of not expressing my emotions with Bart in an effort to take pressure off of him. I just needed to blow steam and I appreciate this group.
CanAMK - We all need to "blow steam" so no apologies needed. My husband doesn't want to do anything - no further tests, meds, etc. He just wants to stay home and not be bothered with interventions. I'm trying to come to grips with this (despite the good intentions of some family and friends who suggest that we are not doing enough). I struggle every day to accept his wishes and make his life comfortable. This forum has been so helpful to me and I'm realizing that it seems more geared to the caregiver than the diagnosed. My husband has never read or participated and generally doesn't have any interest in how others are dealing with it.
Is it a male trait? I read your response to Jillian and thought I would add that my husband's blood pressure fluctuations started in 2017 (at least that was the first time he passed out). The Parkinson symptoms didn't follow until 2020 and they remain mild. He has balance issues now that are getting worse. He also has cognitive problems (processing and memory mainly - he has difficulty following story lines on tv and in books and currently rereads books very slowly). We had a comprehensive mental evaluation done a year ago which resulted in MCI but I see more than mild impairment as he is a doctor of philosophy and highly intelligent. May I ask your husband's age?
I will also let you know that Bart has the cerebellar type of MSA-C. As a healthcare professional myself, I think the MCI is based on certain parameters so it is considered mild by the medical professionals but the executive functions and higher level skills that are impacted that affect quality of life seem extremely affected from our perspective, doesn't it? Bart is 53 and was diagnosed in January of 2020 with further testing only solidifying his diagnosis. Bart is very intelligent as well and his profession is a teacher. He is quick witted and great with language but now it is difficult for him to follow jokes and conversations and he becomes very preoccupied with things especially safety concerns (of others of course). I think when someone is so highly functioning prior to an illness, the deficits are much more pronounced.
I'm so sorry - 53 is too young and compounds the difficulties and worries you are going through. My husband is 78 and we avoid talking to others about his diagnosis because it's hard to hear comments like "we all have to go from something" or "at least it's not cancer." Thank you for sharing - it really helps to hear from others who understand. Ruffner
Thank you for your empathy. I look at it like this: losing your spouse does not hurt less no matter what their age or how long you have been together. Yes the comments hurt but I unfortunately fire back especially with the cancer comment which we have heard. I usually tell them "oh you mean having a disease that we can pinpoint and fight?" I wish you and your husband a peaceful week.
I can relate, and I want to thank you for posting this. I have a husband who is now beginning to choke and aspirate. He has another swallowing study scheduled with a new ENT. I don’t have a wand or a crystal ball. But, you as well as others do shed glimpses into a possible future for my spouse! I didn’t realize that his condition might lead to blacking out from eating…wow! His blood pressure drops almost constantly so I’ve seen the frequency of these episodes increase over a period of 5-6 years. Was that similar to your husband.?
It’s hard to work while you see things declining. In the U.S., we have the Family Leave Act. Employers have to offer it, but a doctor’s support and sign-off is required. Maybe no salary, but you can retain your insurance. I’m not sure about the UK. It sounds like you may need a plan for in home care, or a temporary leave for starters. It’s a dilemma, but trust your instincts about what you need to do. You can’t wish it away, and I know that the workplace can be (was for me) a welcomed daily respite to help me cope. You will adjust and change to meet your loved one’s needs, or find help for him if you continue to work. You can’t evade the changes without separation or divorce. You’ll have to face it and meet the changes head-on. I still struggle with the courage factor. We don’t know for certain what is happening, and it’s just so awful, I just want it to go away, but I know I’m bound to his destiny until it’s all over. I love him, therefore I care and work at being there for him. Just know that you’ll have to take therapeutic breaks to maintain your own health and be able to still experience your own life. It’s a very difficult, complex issue for caregivers, I believe. It’s a matter of survival for you, while supporting a chronically I’ll person. It’s heavy, I know.
Bart has been having symptoms for about 6 years or so. His passing out really only started a couple of years ago but he was mobile then and would crash into the floor. He also has medicine to increase his blood pressure and that helps but is not completely successful. I believe he aspirates and chokes and then passes out when he is eating versus just a sheer drop in blood pressure. So we, too, are in the US. We live in Virginia. I have FMLA for him but I realize that 3 months can be eaten up very quickly. The option I am considering is dropping to 4 days per week which seems like it wouldn't be a help but I think if i can work 2 days and be off a day and then work two days and be off two days, this could help. I too find solace in working so I would like to retain working for as long as possible. I also want to be able to have a job to return to when the ultimate decline occurs. My insurance is quite good compared to some and it allows him counselling, PT,OT,ST therapies, inpatient rehab if needed , home health, and nursing home care. He is not agreeable to these currently but like with other things, it might just have to happen for his safety. Now that he has a roll-in shower, he loves it. Now that he has a power wheelchair, he loves it. As a side note, does your husband have any cognitive issues? Bart seems to be having some processing and social appropriateness issues.
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