Sense of humor and flexibility have eluded me tonight. Wlit was bad enough when, a couple of hours ago, my husband didn't recognize our furniture, then recognized it and wondered how it got here. Now he knows this is our home and our things but is convinced I have moved everything just slightly with help from my "boyfriend ". Says our marriage is over and he doesn't want me near him.
I am so tired. Just when things are going smoothly it all falls apart again.
Where do you find help at times like this? If I call his doctor on Monday is there really anything he can do to help? I know you are all going through similar things so why do I feel so alone?
Thanks for prayers, good thoughts, virtual hugs...whatever you can offer.
Jeh
Progression of symptoms can be unpredictable and fluctuating. The feasibility of in home care by a family member varies. I know my parent’s situation is stressful. The physical and mental toll on 24/7 caregivers is not sustainable. It would be like hiring a caregiver to provide hands on care and expecting them to work 24/7 indefinitely. Getting outside help is crucial. It’s not that easy though. It’s expensive. I’m trying to arrange it now. It’s just heartbreaking for family members to live this way indefinitely. As someone stated upthread, they call it the long goodbye.
Thanks, Jeh. Your response means a lot to me. With the extra laundry
required from the UTI or whatever it is, my guy has decided to get dressed
up every day as if he were going to town. Instead of urinating in his
sweats, he is now urinating in his dress pants and shirts. There is a
mound on the dryer waiting for the old spot remover trick before washing
can happen. The only way you can survive this is to develop a sense of
humor. I guess it is better than him no longer caring how he looks. Right
now, my back is killing me, but at least it is for a good reason. I was
able to get some semblance of order around here. Whatever tomorrow brings,
I will be better prepared than I was today. Ah, small victories. Keep up
the good fight. GloRo
Could you slowly remove donate some of his clothes? I know change is bad but after a few days of moving something to a better location my husband finally accepts it.
I take one day at a time, one comment or problem at a time. I do get rest . But as my spouse has progressed much faster this past year, it has been a real challenge! I feel like no matter what you do , it is not good enough. The past two day's my spouse has actually shown interest in how he treats me and the mean comment's! Three times this week I have been so surprised! I know this maybe be fleeting and sometimes so busy. I forget I need to stop and smell the rose's once in awhile. That being said we have good and bad day's. Hugs to you!
Progression of symptoms can be unpredictable and fluctuating. The feasibility of in home care by a family member varies. I know my parent’s situation is stressful. The physical and mental toll on 24/7 caregivers is not sustainable. It would be like hiring a caregiver to provide hands on care and expecting them to work 24/7 indefinitely. Getting outside help is crucial. It’s not that easy though. It’s expensive. I’m trying to arrange it now. It’s just heartbreaking for family members to live this way indefinitely. As someone stated upthread, they call it the long goodbye.
I am in the same boat. (I have not read all this thread yet, so my experience may be out of place.) My father has lived with us for the four years since my mother died. Has weathered many serious health issues! It is frustrating for him to have so many functional limitations (failing eyesight, mobility, etc). He has not been diagnosed with any form of dementia, however. But his care needs mount, despite his efforts at independence (and the things he still does for himself can be surprising). But my husband and I are at the place where we need to secure some in home help. My father is extremely resistant to the idea, and we tabled it last summer and gave up vacation (for numerous reasons it isn’t a situation where he would be able to go with us at this point, so until last summer we haven’t even tried to get away). But it has gotten to the point where we really need to have some help—for ourselves and for his benefit as well! This was “brought home” to me when I contracted COVID for the first time last fall, but still needed to care for him (meds, food, cleaning, laundry, etc)—double masked and gloved and then back to isolation. Thankfully he did not catch it—but it would be so much better for him if we had had some back up!). It IS expensive! I hope you are able to get everything arranged and it goes smoothly!
I am in the same boat. (I have not read all this thread yet, so my experience may be out of place.) My father has lived with us for the four years since my mother died. Has weathered many serious health issues! It is frustrating for him to have so many functional limitations (failing eyesight, mobility, etc). He has not been diagnosed with any form of dementia, however. But his care needs mount, despite his efforts at independence (and the things he still does for himself can be surprising). But my husband and I are at the place where we need to secure some in home help. My father is extremely resistant to the idea, and we tabled it last summer and gave up vacation (for numerous reasons it isn’t a situation where he would be able to go with us at this point, so until last summer we haven’t even tried to get away). But it has gotten to the point where we really need to have some help—for ourselves and for his benefit as well! This was “brought home” to me when I contracted COVID for the first time last fall, but still needed to care for him (meds, food, cleaning, laundry, etc)—double masked and gloved and then back to isolation. Thankfully he did not catch it—but it would be so much better for him if we had had some back up!). It IS expensive! I hope you are able to get everything arranged and it goes smoothly!
babbsjoy, since I posted upthread in August, I did obtain in home health care and it has been very stressful as my dad is very resistant to the help. I must exert substantial effort to supervise when the aid comes, as daddy doesn’t want him in the house. He also refuses to allow the aid to assist him with hygiene, showering, shaving, etc, which he needs. The entire family, siblings, grandkids, etc. have told him it must happen, but he is not convinced. So, my mom and I can’t continue. I have contacted multiple facilities and have put him on the waiting list at one facility. I doubt he’ll like the nursing home, but we have no choice.
I’d get at least 4-5 hours a week, if you can and see how that goes. It’s not working out the way we expected. Resistance to care has proven to be the biggest issue with my parents. Both of them.
Good luck with everything. It can be very stressful and exhausting.
I’ll look forward to seeing how things go.
babbsjoy, since I posted upthread in August, I did obtain in home health care and it has been very stressful as my dad is very resistant to the help. I must exert substantial effort to supervise when the aid comes, as daddy doesn’t want him in the house. He also refuses to allow the aid to assist him with hygiene, showering, shaving, etc, which he needs. The entire family, siblings, grandkids, etc. have told him it must happen, but he is not convinced. So, my mom and I can’t continue. I have contacted multiple facilities and have put him on the waiting list at one facility. I doubt he’ll like the nursing home, but we have no choice.
I’d get at least 4-5 hours a week, if you can and see how that goes. It’s not working out the way we expected. Resistance to care has proven to be the biggest issue with my parents. Both of them.
Good luck with everything. It can be very stressful and exhausting.
I’ll look forward to seeing how things go.
Oh, I am so sorry things are not working! I am concerned about the same for us. He is very resistant to the idea of anyone coming in as well, and I am concerned about where we are headed with all this! I can understand it, but it does put such a strain on everybody! Never would have anticipated being in this situation…..Your suggestions are appreciated—I will look at least that many hours to get started….
You are right, you have no choice but to look at facility care if nothing else is going to work/meet cooperation. I pray all will work out for you very soon!
Oh, I am so sorry things are not working! I am concerned about the same for us. He is very resistant to the idea of anyone coming in as well, and I am concerned about where we are headed with all this! I can understand it, but it does put such a strain on everybody! Never would have anticipated being in this situation…..Your suggestions are appreciated—I will look at least that many hours to get started….
You are right, you have no choice but to look at facility care if nothing else is going to work/meet cooperation. I pray all will work out for you very soon!
Thank you for your kind words. I believe the resistance is due to poor judgment. My dad can’t be thinking straight if he refuses help, in light of the situation. So, I feel confident that placement is appropriate. The professional staff there will be responsible for caring for him and maybe he won’t resist there. If so they’ll deal with it.
babbsjoy, since I posted upthread in August, I did obtain in home health care and it has been very stressful as my dad is very resistant to the help. I must exert substantial effort to supervise when the aid comes, as daddy doesn’t want him in the house. He also refuses to allow the aid to assist him with hygiene, showering, shaving, etc, which he needs. The entire family, siblings, grandkids, etc. have told him it must happen, but he is not convinced. So, my mom and I can’t continue. I have contacted multiple facilities and have put him on the waiting list at one facility. I doubt he’ll like the nursing home, but we have no choice.
I’d get at least 4-5 hours a week, if you can and see how that goes. It’s not working out the way we expected. Resistance to care has proven to be the biggest issue with my parents. Both of them.
Good luck with everything. It can be very stressful and exhausting.
I’ll look forward to seeing how things go.
I love hearing success stories about in home caregivers but I'm grateful to hear that many people have trouble making it work. That's where I am with my hubby. He wants me to do everything for him, even something as simple as getting him a glass of water, and wants caregiver to do housekeeping. I've tried leaving for quick errands but in 10 minutes he's calling to ask where I am and when I'll be home. (I've managed 30 minutes away at most) He's actually afraid to be away from me so I hesitate to just make him just tough it out. Guess I'll just keep at it and pray we can make it work. I really can't keep up the 24/7 schedule much longer.
Update: We had the best day yesterday! A new caregiver was here and she was great. She was more mature than the women we have had before. Also, originally from this city. She and my husband hit it off like old friends. They had a lot to talk about and played records all afternoon. He still didn't want her help with toileting but at least I had time to get some things done around here and even went to the store without him calling me wonderwhete I was. I don't know if she can return, she was meant to be one time only. Fingers crossed.
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@jehjeh
Nights are the worst time because we are both exhausted, and I have no coping skills. There are no distractions!
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4 ReactionsProgression of symptoms can be unpredictable and fluctuating. The feasibility of in home care by a family member varies. I know my parent’s situation is stressful. The physical and mental toll on 24/7 caregivers is not sustainable. It would be like hiring a caregiver to provide hands on care and expecting them to work 24/7 indefinitely. Getting outside help is crucial. It’s not that easy though. It’s expensive. I’m trying to arrange it now. It’s just heartbreaking for family members to live this way indefinitely. As someone stated upthread, they call it the long goodbye.
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7 ReactionsCould you slowly remove donate some of his clothes? I know change is bad but after a few days of moving something to a better location my husband finally accepts it.
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3 ReactionsI take one day at a time, one comment or problem at a time. I do get rest . But as my spouse has progressed much faster this past year, it has been a real challenge! I feel like no matter what you do , it is not good enough. The past two day's my spouse has actually shown interest in how he treats me and the mean comment's! Three times this week I have been so surprised! I know this maybe be fleeting and sometimes so busy. I forget I need to stop and smell the rose's once in awhile. That being said we have good and bad day's. Hugs to you!
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7 Reactions@celia16
I am in the same boat. (I have not read all this thread yet, so my experience may be out of place.) My father has lived with us for the four years since my mother died. Has weathered many serious health issues! It is frustrating for him to have so many functional limitations (failing eyesight, mobility, etc). He has not been diagnosed with any form of dementia, however. But his care needs mount, despite his efforts at independence (and the things he still does for himself can be surprising). But my husband and I are at the place where we need to secure some in home help. My father is extremely resistant to the idea, and we tabled it last summer and gave up vacation (for numerous reasons it isn’t a situation where he would be able to go with us at this point, so until last summer we haven’t even tried to get away). But it has gotten to the point where we really need to have some help—for ourselves and for his benefit as well! This was “brought home” to me when I contracted COVID for the first time last fall, but still needed to care for him (meds, food, cleaning, laundry, etc)—double masked and gloved and then back to isolation. Thankfully he did not catch it—but it would be so much better for him if we had had some back up!). It IS expensive! I hope you are able to get everything arranged and it goes smoothly!
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Helpful -
Hug
6 Reactionsbabbsjoy, since I posted upthread in August, I did obtain in home health care and it has been very stressful as my dad is very resistant to the help. I must exert substantial effort to supervise when the aid comes, as daddy doesn’t want him in the house. He also refuses to allow the aid to assist him with hygiene, showering, shaving, etc, which he needs. The entire family, siblings, grandkids, etc. have told him it must happen, but he is not convinced. So, my mom and I can’t continue. I have contacted multiple facilities and have put him on the waiting list at one facility. I doubt he’ll like the nursing home, but we have no choice.
I’d get at least 4-5 hours a week, if you can and see how that goes. It’s not working out the way we expected. Resistance to care has proven to be the biggest issue with my parents. Both of them.
Good luck with everything. It can be very stressful and exhausting.
I’ll look forward to seeing how things go.
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3 Reactions@celia16
Oh, I am so sorry things are not working! I am concerned about the same for us. He is very resistant to the idea of anyone coming in as well, and I am concerned about where we are headed with all this! I can understand it, but it does put such a strain on everybody! Never would have anticipated being in this situation…..Your suggestions are appreciated—I will look at least that many hours to get started….
You are right, you have no choice but to look at facility care if nothing else is going to work/meet cooperation. I pray all will work out for you very soon!
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Hug
5 ReactionsThank you for your kind words. I believe the resistance is due to poor judgment. My dad can’t be thinking straight if he refuses help, in light of the situation. So, I feel confident that placement is appropriate. The professional staff there will be responsible for caring for him and maybe he won’t resist there. If so they’ll deal with it.
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Helpful -
Hug
7 ReactionsI love hearing success stories about in home caregivers but I'm grateful to hear that many people have trouble making it work. That's where I am with my hubby. He wants me to do everything for him, even something as simple as getting him a glass of water, and wants caregiver to do housekeeping. I've tried leaving for quick errands but in 10 minutes he's calling to ask where I am and when I'll be home. (I've managed 30 minutes away at most) He's actually afraid to be away from me so I hesitate to just make him just tough it out. Guess I'll just keep at it and pray we can make it work. I really can't keep up the 24/7 schedule much longer.
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Helpful -
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5 ReactionsUpdate: We had the best day yesterday! A new caregiver was here and she was great. She was more mature than the women we have had before. Also, originally from this city. She and my husband hit it off like old friends. They had a lot to talk about and played records all afternoon. He still didn't want her help with toileting but at least I had time to get some things done around here and even went to the store without him calling me wonderwhete I was. I don't know if she can return, she was meant to be one time only. Fingers crossed.
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