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I was never a full time care giver to my parents, but there was plenty of trauma and drama in their final couple of years. I live out of state, so my brother who lived close to them had the brunt of the load. However, every six weeks I would go spend a week with them to give my brother a break, and he and I consulted on every decision.
My mother died shortly after they went into assisted living, and a few months later, my father also passed.
Could have/should have been a time of relief and healing, but didn't work out that way. Six weeks after we buried my father, my 26 year old niece was killed in a car accident by a drunk driver. To say the least, this made the difficulties with the folks look like a walk in the park.
My husband was diagnosed with Parkinson's several years ago. Fortunately, his was progressing very slowly, and with medication, it didn't stop him from living a productive and enjoyable life. For the most part, his symptoms were more of a nuisance than anything. He worked full time, we walked two miles most days, pretty much had no limitations. Spent many of our weekends hiking and enjoying nature.
Shortly after the death of my niece, my husband's Parkinson's began to progress rapidly. What was once a nuisance became a roaring beast. He can no longer work, struggles to walk ten or twenty minutes at a time, and needs help getting dressed. My once dynamic husband now spends way too much of his day doing nothing, and too many nights unable to sleep. He looks as if he's aged ten years.
Because he had to stop working sooner than expected, I'm trying to figure out our finances. Our retirement plans for fun and travel are dust, both because of finances and because of his diminished capabilities. Did I mention that I've also had two major surgeries in the past eighteen months?
Some of my so called "Christian" friends have been MIA since the death of my niece. The last time (and I do mean the LAST time) I went to church, during the praise and worship portion of the service, feelings of grief and loss overwhelmed me and I left in tears. I left quietly and did absolutely nothing that I thought might call attention to myself. Obviously someone noticed because I got word later that "people" were talking about how Shelia isn't handling things well.
Two years ago at this time, we had recently gone to court to get guardianship over my parents, and I was dreading the upcoming involuntary move they would be making to assisted living. If I had known then what I know now about the storms that were to come, I hate to think of what I might have done to avoid facing all of this.
The trigger for this vent/pity party is that earlier today my husband and I went grocery shopping and ran into one of the "friends" who dropped out when I lost my niece. She was clearly uncomfortable, couldn't take her eyes off my husband, and chattered nervously as she got away from us as fast as possible. I almost laughed out loud at her haste. I'm quite certain she'll quickly spread the word about how terrible both of us look and how we are somehow handling things incorrectly.
You definitely find out who are your true friends whenever you go through difficulties. It doesn't help that today is cold, gray, and cloudy. Another day I will feel better and will count my blessings for my supportive family and the supportive friends that I do have. Some days ya just need to rant and rave.
Yours is truly a cautionary tale. No matter what our plans are, the universe can quickly change them all. And it does sometimes take a crisis to find out who we can truly count on.
My motherinlaw cared for her husband with Parkinsons for 15 years and the last years were very difficult. He died 7 years ago and she still talks about the plans they had that were never fulfilled.
I wish I could write something that would make it better for you Sheila.
I'm glad you posted.
I will venture to say to you- Please be proud of the fact that you are clearly not as cowardly and weak and un-empathetic as the person you saw today that prompted you to post.
Although maybe running into this person will result in something good. Maybe this person will reach out to you again, now that she ran into you. Maybe that will happen or maybe someone she speaks to will. If you would like that to happen then I hope it does.
I was never a full time care giver to my parents, but there was plenty of trauma and drama in their final couple of years. I live out of state, so my brother who lived close to them had the brunt of the load. However, every six weeks I would go spend a week with them to give my brother a break, and he and I consulted on every decision.
My mother died shortly after they went into assisted living, and a few months later, my father also passed.
Could have/should have been a time of relief and healing, but didn't work out that way. Six weeks after we buried my father, my 26 year old niece was killed in a car accident by a drunk driver. To say the least, this made the difficulties with the folks look like a walk in the park.
My husband was diagnosed with Parkinson's several years ago. Fortunately, his was progressing very slowly, and with medication, it didn't stop him from living a productive and enjoyable life. For the most part, his symptoms were more of a nuisance than anything. He worked full time, we walked two miles most days, pretty much had no limitations. Spent many of our weekends hiking and enjoying nature.
Shortly after the death of my niece, my husband's Parkinson's began to progress rapidly. What was once a nuisance became a roaring beast. He can no longer work, struggles to walk ten or twenty minutes at a time, and needs help getting dressed. My once dynamic husband now spends way too much of his day doing nothing, and too many nights unable to sleep. He looks as if he's aged ten years.
Because he had to stop working sooner than expected, I'm trying to figure out our finances. Our retirement plans for fun and travel are dust, both because of finances and because of his diminished capabilities. Did I mention that I've also had two major surgeries in the past eighteen months?
Some of my so called "Christian" friends have been MIA since the death of my niece. The last time (and I do mean the LAST time) I went to church, during the praise and worship portion of the service, feelings of grief and loss overwhelmed me and I left in tears. I left quietly and did absolutely nothing that I thought might call attention to myself. Obviously someone noticed because I got word later that "people" were talking about how Shelia isn't handling things well.
Two years ago at this time, we had recently gone to court to get guardianship over my parents, and I was dreading the upcoming involuntary move they would be making to assisted living. If I had known then what I know now about the storms that were to come, I hate to think of what I might have done to avoid facing all of this.
The trigger for this vent/pity party is that earlier today my husband and I went grocery shopping and ran into one of the "friends" who dropped out when I lost my niece. She was clearly uncomfortable, couldn't take her eyes off my husband, and chattered nervously as she got away from us as fast as possible. I almost laughed out loud at her haste. I'm quite certain she'll quickly spread the word about how terrible both of us look and how we are somehow handling things incorrectly.
You definitely find out who are your true friends whenever you go through difficulties. It doesn't help that today is cold, gray, and cloudy. Another day I will feel better and will count my blessings for my supportive family and the supportive friends that I do have. Some days ya just need to rant and rave.
You have my sympathies. Church should be a place of fellowship and comfort for you. Seriously, if I had that experience, I'd either stop going completely or find another church where the people did more than just give lip service to being Christians. Where is your minister? Has he reached out to you at all? It is normal to feel the way you do about grief and loss. It takes time for you or anyone to work through this kind of sadness.
You have had more than a full plate to deal with these last few years. Best of luck to you.
You have my sympathies. Church should be a place of fellowship and comfort for you. Seriously, if I had that experience, I'd either stop going completely or find another church where the people did more than just give lip service to being Christians. Where is your minister? Has he reached out to you at all? It is normal to feel the way you do about grief and loss. It takes time for you or anyone to work through this kind of sadness.
You have had more than a full plate to deal with these last few years. Best of luck to you.
I agree with all this, and the bolded part is the question that kept coming to my mind as I read your post, Sheila. If your minister hasn't been checking on you either, that's just no kinda church. Churches and ministers and support staff should be reaching out to you. If I'd had your experience I wouldn't darken the doors of that place again either. But I do hope you find the time to plug into another church or a local support group, or heck, a group that has nothing to do with illnesses, like a painting group or book club or something like that. You need some girlfriends. You need some lunches or coffee meetups or something like that.
I am so so sorry about your husband's illness. Parkinson's is a tough one, particularly tough I think. My MIL had it. About the last two years is when the debilitating effects really kicked up in speed. Also, a friend of mine from high school just went through this with her husband. They were only in their mid fifties and he came down with Parkinson's - wow, talk about a life changer for both of them. It was heartbreaking to watch her struggle to care for him while grieving the loss of their future together. I haven't been there myself but I can imagine how hard it would be.
Sheila, can you get some counseling? I'm asking because when I finally got completely overwhelmed with the stress (I think you know my story so I won't repeat it), I finally decided to get some life counseling. Better late than never! Like you, my husband and I had gone through a lot of grief and stress and loss over a period of several years. It just all built up to more than I felt I could handle in a healthy fashion and both of us were experiencing health issues which I felt were due to the stress. It was the best decision I may have ever made. I feel like the counseling brought me back from the very brink of a broken heart, broken health and maybe even a broken marriage. (No, we never talked about splitting up but by broken marriage I mean a permanently broken and altered relationship.) I don't think I could have processed it all without that counseling to help guide me. I really encourage you or you and your husband to get some professional counseling - you've had so much loss and stress to process. (I went to some alone and some with my husband - both types were helpful and I think we went for about 4 months.)
You may or may not need some sort of antidepressant. I didn't know what I needed, but my counselor told me that my feelings were very normal and let's try to do it without meds, and I did. But honey, I would have taken some if she'd felt I needed them, believe me! I'm glad I didn't though - that would have been one more complication.
It's normal and even healthy to feel sorrow, grief, frustration, anger, whatever at times - I think the key is "How do we process those emotions?" It's when we get stuck in one of those stages that things tend to get really crunk and our health can become affected, not to mention other relationships.
I know it sounds trite but this is very true - You have to put your own oxygen mask on before you can help someone else with theirs.
One quick and simple thing I did which made a HUGE difference in my daily life (and daily attitude) was that I got out a laundry basket and walked around my house and put EVERYTHING that made me feel sad into that laundry basket. Everything - every photo, every memento, every doodad or whatever that had belonged to a person we had lost over the past few years (if it made me feel sad). I mean, I would just stop in front of an item or pick it up and if I got any sort of negative or sad feeling from it, I put it in the laundry basket. Then I packed that stuff up and put it in the attic. Then I replaced the photos of dead people with photos of my husband and I doing fun things together, or of grandchildren smiling at us - only happy photos full of love and hope. No, I didn't throw away the photos of people who had died or of times past - I just put them away.
I even changed all my passwords to positive things that made me feel happy! NOTHING was allowed in my house that made me feel sad!
The funny thing is that a few weeks ago, I opened up that box and looked through the things, and they didn't make me sad anymore. But I still didn't put them back out because they also don't make me happy yet.
I gave away some things too, to adult kids, who were thrilled to get them. With all the death and sales of property we'd gone through, we just had accumulated a lot of nostalgic stuff but that doesn't mean we have to display it all.
That was just something positive and simple that I did, that made a really big difference in my life. It was sort of like a purging.
Hope this helps! Your feelings are completely normal and I am so glad you shared them with us. Please keep us posted. This is a good place.
Well, your church has failed you. You might try to find a different support system, perhaps a caregivers’ group.
Sure, the minister should have involved himself, but the people who should have rallied round are your friends.
I agree that you seem to have courage and fortitude, and bless you for caring for your husband. I hope you can find time every day for yourself, to rest and think.
I think that some practicing Christians tend to think that being Christian protects them from disaster, and when disaster strikes someone else, they blame or avoid as a coping mechanism. I heard a sermon today about walking through our catastrophes with our faith. I hope you are able to do that. I am so sorry you feel abandoned.
Others come to this place to vent. It is as if we are all holding each others’ hands sometimes. So I hope you feel free to come back.
Sheila, I am sorry for what you are going through. My husband had Lewy Body Dementia and Parkinson's disease. I took care of him for 8 years and it wasn't always easy. One good thing is that Lewy Body Dementia generally presents first, before the Parkinson's symptoms, so it is a good bet that your husband won't have that.
My husband passed away and although many of my friends came to the funeral service I have not heard a peep from most of them since then. It has been two months and not a word, not a text, nothing! At first I really felt hurt by the silence but I figure that everyone handles adversity differently and if these are people who can only handle being "fair weather friends" then they aren't people that I could have looked to for support anyway, so it doesn't really matter. Don't let other people's behavior get you down. You have enough on your plate without having to give any space in your head to them.
By the way, your husband wasn't in Viet Nam, was he?
I appreciate all the responses. For some reason, these past few days have been hellish and every little thing seems to upset me terribly. Earlier today I had a complete meltdown and just cried uncontrollably.
I have been prone to depression all of my adult life, but my husband was the opposite. He was almost ridiculously cheerful and optimistic, so we were a nice balance for each other. Now, all too often, he is also depressed and I'm struggling to keep both of us from circling the drain emotionally. At his next appointment with the neurologist, I'll ask if an anti depressant might help him. I've tried them at various times in the past and never found one that didn't result in intolerable side effects. I have difficulty finding any meds that work well with my annoyingly sensitive system.
I have an appointment to meet with a counselor, but not for another month. This place was highly recommended, but the earliest opening they had for someone new was six weeks away. Money is tight and thought of spending it on counseling is causing significant stress, so I hope this doesn't turn out to be yet another seemingly good idea that didn't work out as hoped.
We have joined a Parkinson's support group that meets once a month. The people are great, but the meetings are geared towards information, not emotional support, and that has been a bit of a disappointment for me. However, it seems to be exactly what my husband was looking for, so we will continue to go as long as it benefits him.
As for church, I'm a person of faith, not religion, so while I like attending a weekly service, I can live without it. Ironically, the reason I had been attending the previous place was because right from the start, I felt at home and among friends. The minister was great at sermons and leading the service, but not so good with personal relationships. This was fine with me because it seemed I had found other like minded people. We had a group that met weekly and I thought we had a deep connection. Never is a long time, but I don't see myself trusting anyone at that level again.
Sorry for writing another long post. I do still have some real life friends, but none of them can understand like the folks here on the care giving forum.
TrilbyandDixie, a couple of people in our Parkinson's group have Lewy Body Dementia and it makes dealing with Parkinson's look easy. I am so sorry you and your husband had to deal with that. One of the wives described her husband's deterioration as like "riding on a bullet train" because it was so fast.
My husband was not in Vietnam. However, both of the men in our group who have Lewy Body Dementia were. There are also two men in the group who have Parkinson's with memory issues and they also were in Vietnam. Was your husband in Vietnam also?
It angers me that your "friends" haven't stepped up to support you since you lost your husband, but I guess it shouldn't be a surprise. I hope you have family or some real friends to help you through this time. It's unbelievable how callous and thoughtless people can be.
Shelia, the reason I asked about Viet Nam is that Parkinsons is linked to exposure to agent orange. Because that is presumably the cause for those vets (like my husband) then the VA takes care of the medical treatment.
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