The Caregivers' Guilt Dumpster - Open for business

@tavi we haven't heard from you for a while. How are you?

Thanks for checking - I appreciate it. I've been reading and learning from everyone posting to this site - thank you all so very much. I hope to be able to return your gifts in the future! I've been quiet in order to essentially reserve energy and focus -- I'm working pretty hard to figure out the best path forward for my husband and me -- I want very much to try to provide him the comfort of care in our home. However, he can no longer understand that I cannot do everything by myself - especially since he is not aware that he awakens 5 or 6 times every night and needs to completely change his clothes due to sweating. His daily behavior is also changing -- he's become very dependent, needing to know where I am and what I'm doing at all times and he has started to have serious confusion / agitation late in the afternoon. I may be one of the textbook cases of facing caregiver exhaustion and waiting too long to research, find and introduce the breadth of external help that is required for care at home.... I've started working with our local Home Health Services group -- the visiting nurse came for the first time last week and suggested some additional medications that might help with the agitation.... I am also planning to add more hours to the companion care we currently have. Finding caregivers who understand and can manage the full range of behaviors is challenging. Again, thanks for checking - I have not talked about "guilt" in this post so I will end with a comment. It is critical for my sanity to remember that my best effort today is sufficient -- whatever combination of care I am able to establish, it will not stop this awful disease but it will bring comfort in the moment to both my husband and to me.

Hi @tavi Wishing you well on this stage of your caregiving journey. None of them are easy, but times of patient change are especially challenging for sure. My wife became very dependent on me, too. I think in certain people at certain times it is 'normal' for them to seek some level of comfort, especially during those times of change. So they look to their greatest source of that and it their primary caregiver. My wife used to get agitated when I would be out of her sight to go to the bathroom 🙂

During the nights, if it wasn't medication related, I found I had to dial back my care. I began slowly increasing the intervals between changes, etc., adding a layer of towels and pads on the bed above the sheet, etc. to 'slow down' the process in the night.

Sundowning is a very common symptom and both my wife and mother in law exhibited it. Our doctor began adjusting the times of dosages to combat that. Didn't relieve it all, but did help.

Peace and strength!

Providing care for our family members who are struggling is essential. Taking care of yourself is important as well. I praise your choice of getting additional help for your husband. You need time for yourself, if anything, to just take a nap without interruption. You can't take the chance of you becoming ill yourself. Do you have family or friends someone from church that could help out at times? Someone your husband knows that would be willing to spend an hour or so with him while you run errands or go out for lunch. Do not feel guilty for doing something for yourself. Even see if someone could bring in a meal or two so you won't have to cook. If someone asks how they could help, ask them to provide a meal now and then.
You are on the right track in getting extra help. Your love and support for him is wonderful.

Thanks for this great resource: the Guilt Dump

My hubby wants me to fly with him to an exhibit in California. It's a 3-4 hour flight and includes overnight in a hotel. I am going to have to tell him we can't manage this and I'm feeling the anticipatory guilt.

Traveling with him in a wheelchair means finding single stall restrooms, sometimes on very short notice. Car rental, drive to hotel, not knowing where to find a restroom on the road, hotel check in time, organizing the room so he can get around, figuring out dinner, trying to sleep when he's up and down all night... I know, I'm preaching to the choir. I'm just so angry that friends continue to tell him about these events. I'm telling everyone to send pics after the fact. I hate that he can't be there since he has so little to look forward to.

This is so hard. Wish I could give up but that's not an option.

Thanks for the dumpster.

Not to mention traveling with enough incontinence supplies to get us through the trip. Imagine airplane restroom where he'll be on his own without assistance. A recipe for disaster!

I have dealt with traveling complications three times- once with my mother and twice with my husband. Every one was different but all were extremely difficult and exhausting, mentally, physically, or both.

In my mother’s case- it was trying to get her to a funeral eight hours away. My siblings and I struggled to find a solution, but in the end, we told her we could not take her or get her there. We were all heart broken in our own ways.

I do not think any of us got over the decision.

There are not enough resources and accommodations for traveling with someone who needs constant care. Hotels do not offer good sleeping solutions- my husband has to sleep in an elevated and adjustable bed. Hotels do not offer these and I have searched the other rental sources. The hotels do not even offer a recliner as an alternative- even though my husband is so stubborn he would not agree to a recliner- but it is an option for some.

His best friend’s wife is in the last stages of cancer and we cannot be there - it is all the way acrosss the country. It is breaking our hearts.

There is a huge opportunity for a visionary to take on the traveling issues, especially with an aging population.

As a caregiver with a full time ( paid) job, I cannot take this on-but maybe I will start with writing and posting.

For now- I just live with the guilt of not being able to solve this for my husband or myself- as individuals and as a couple.

So my heart and understanding goes out to all, no matter the situation. I wish you peace with your decision, and with living with the aftermath. That part is mentally exhausting as well.

Keep your faith

What an awesome way to dump in the dumpster. I have had to stop asking myself "why me"? I thought why not me?? Unfortunately I don't have a choice and I did get three person's in my family that have Parkinsons! I have had to say ok God you have me. Well dumpster dump yesterday was frustration..that really made me inpatient. All I have to do is look at my spouses face and I know I screwed up! Guilt comes immediately! I like to see happiness when I cannot always do caregiving perfectly it feels like a failure. My spouse is petrified of getting cleaned up/ showering. He is afraid of falling. I get it ! Chair or no chair depends on his mood. So I don't expect perfection ..but not smelling issues is a difficult thing! Today it was perfect! Kindness and appreciation of his spouse! ☺️

Hi I’m new to this group but find so many people are walking my path of caretaking struggles right now. My husband has late stage ALS with respiratory failure and on a home NIV. What is Sundowning? I’ve not heard that term.
Janis

Hello. When the sun goes down or if night is scarey or confusing. The person that has problems with various types of neurological issues tend to be much more confused, scared and sometimes combative. If they have DBD, ALZ or DRI. It can trigger agitation and fear which usually overwhelming by that person and hard as well for the Caregiver.