Feel like I’m becoming reclusive
Out of necessity, DH is stage 6. It’s just too hard to do things with him. He won’t tolerate caregivers so it’s mostly all on me except for family helping at times. Won’t go to day care. Just going to the grocery store alone is rare. Taking him out in public is hard because his speech is garbled and he tries to talk to strangers etc. I’m finding I just choose to stay home with him almost all the time. I do on line watercolor lessons. Take a walk when I can. We go take care of our horses every day. But no socializing. None. (Except my mom and sister.) It’s strange to say that I’m getting used to the solitude. It’s hard to imagine interacting with people, I wonder if this is permanently changing me. Does anyone else feel this way?
Comments
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Oh yes i totally relate to this. I am beginning to feel so isolated and I am fighting it but I can feel my strength running out. Everything is becoming so hard, just to get dressed and then get into the car, to figure out where to go and then it sweeps over me, why bother ? But I push myself and gently coaxe my DH and puppy. I’m so tired but I don’t want to sleep during the day, I want to pursue my sewing, my reading, my writing and painting to me it’s vital to keep something going, but I’m so tired. My DH also won’t tolerate caregiver’s or day care and isn’t really happy if our daughter comes here. It’s so hard and I wonder if I will ever be able to mix again, laugh again or think clearly again.
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I hope you find the strength to get through this trying time. I hope you find a pathway to LIVE again and be happy.
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I feel the same way…just want to avoid everyone and can't imagine laughing and being happy ever again. I worry about losing my vocabulary…can't read a book because DH is jealous of the time I would spend on something other than him (this has been the case for years and years). His constant negativity has turned me into a toxic, sad person that I can't imagine anyone wanting to be around. I have given up painting in the daytime because he can't handle my 'selfishness' and always plan to go into my studio at night after he goes to bed, but like Biggles, I am just so tired. I dream of just jumping into the car and going grocery shopping without it being the ordeal that it has become. I think I need to start taking drugs!
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I was starting to think I was just depressed, but I see other people feel this way. Dh doesn't want to go or do anything. If I go alone it's straight there and back. The really only reprieve I get is from working about 12 hrs a week. I feel like I'm becoming a hermit and getting use to it. That's not good.
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Same, though my DW is most likely in Stage 5. Very, very hard holiday season for us. She's more clingy and confused. I had my best friend visit us over the holiday, who my DW loves and trusts. After day 2, my DW said we never spend any time together anymore and I shouldn't have friends visit anymore. Sigh.
Though I've incorporated a lot of sitting around time watching television I don't like with DW, I have most certainly not adjusted to the life of a hermit. I'm only 58 and have always had a lot of energy. To sit day after day remains very difficult to me.
Hang in there, my fellow travelers. We'll find our way somehow.
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We used to stream a movie every night but now DH can't watch tv because he becomes agitated since he can't use the remotes, follow the plot or figure out who the characters are so no more movies…we always watched football or golf on the weekends but he now finds all of the games boring, so no more sports. Just more things to add to the 'used to do' list. Today he wasn't speaking to me for hours but whatever the problem was he has forgotten it and is fine now. I am totally bored with life too…can't imagine what it would be like to be 58 yrs old and going through this like CindyBum…so sorry!
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WOW…….to all of you, thank you for sharing! Your words have validated all of my feelings & what I too am going through with my DH!!!!!! I definitely don’t have any answers or words of wisdom but it is comforting to know that I am not alone…….I pray for us all to have the strength to get through the daily struggles with caring for our loved one with this disease❤️
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I am so familiar with everything you all have posted here. Also, very dismayed. It's great that caregivers have this place to connect but I wish non caregivers would click on sometimes just to understand what we're all living with. There are so many of us struggling but it seems like we're all on our own. In home caregivers, day programs, AL or MC, psychologist for me...these are the suggestions I've seen. It all sounds wonderful until none of those will work in my situation. In the meantime, I'm going broke, DH is becoming more of a burden, my physical and psychological health is declining. I'm so angry right now I could scream but that would upset DH and I'd spend the rest of the day calming him down.
Thanks for letting me rant.
jejehjeh
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I know what you’re feeling. I know that socialization is good for PWD’s but every social situation puts me on edge, not knowing what DH will say or do. So I maybe tend to be more reclusive than I used to be because of that. But the day to day just the two of us is so boring and monotonous. Jigsaw puzzles…the same ones over and over, a few of his favorite movies…the same ones over and over, bike rides…the same route day after day, sometimes 2 or 3 times a day, because that’s where he wants to go (at least I’m getting some exercise!). So I hope that this reclusive life will not become my new norm when this is all over - we had so many plans when I retired, so many places to travel to…
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interesting how you find your feelings in others here. I am reluctant to go outside our routine because when I do I become anxious and hyper vigilant.
What good is a social event when I must keep an eye on DH? It is not relaxing or fun.
What good is a bike ride when I must navigate, he follows but I have to keep an eye on him in the bike mirror? Again—not fun.What good is a dinner out when he usually dislikes the food because it is unfamiliar or the restaurant is noisy and confusing to him? It is not fun.
What good is travel when he becomes anxious and confused asking me repetitively where we are, where we are going and why? It is not fun.
So, our world is getting smaller each day. We are together alone in our home. Our routine is repetitive and boring for me. All the advice in the world about keeping up socializing does not match the reality of my caregiving experience.
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Ditto…I am dying a slow death of boredom, but it is better than the anxiety of trying to do anything.
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I can so relate. TV is out, we listen to music the time. Lately, DH (stage 6) wants nothing to do with me, asking me to leave the house and then suddenly resets and follows me around. People have suggested putting him in MC for respite, but he no longer can tolerate even going out in the car for long. Had to stop going to restaurants, shops (I have everything delivered). We are on the 3rd week with a caregiver which is amazing, the longest he tolerated anyone. Don't know what to do!! He is so fearful of being alone but wants desperately to be independent. Terrible! I thought it would get easier with meds for the agitation but mentally it is so hard. Friends no longer want to talk or visit.
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Good timing for your post (OP). I can't take DH anywhere either. He either refuses to change his clothing or put on anything but sweats, he won't cut his hair or trim his beard, and in places like the grocery store he likes to insert himself into other people's conversations. Some of his own family won't socialize with him because he says insulting things which he thinks are funny. My family is hundreds of miles away and want me to come see them but traveling with him would be more stressful than it's worth. My only socialization right now is talking to a few long distance friends on the phone. I remember a decade ago having a social circle, going out to eat with girlfriends. having people over…so, yes, this situation has changed my life a lot.
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I hate being so reclusive. I had a full life, we both did. I miss my friends, coffee or lunch out. Going for a walk, being alone in my own home. Talking on the phone without constant interruptions. Reading a book, watching TV, anything without constant interruptions. Like some of you, I have tried in home help but he just wants them to do housekeeping with me directing them. What happens if I get sick? I pray I don't.
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So very true. I'm not alone in feeling this way. This Alzheimer's is hard for both of us. Feel like I'm wasting years away
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Your post breaks my heart like so many do. I’m in year 3 with my DH and, although things are progressing, we’re doing well. He’s very confused at times and can’t do any of the things he once did but I have no trouble with anything. We get along well, walk daily, he helps with dishes, we watch tv. He showers daily but I have to help him get going. I feel so fortunate right now. Im wondering how long your DH has been batting this and what stage he is in. You mentioned it’s been a decade since you had a social circle. That’s so sad. Our friends have slowly dropped away, too. We can now count our true friends on 1 hand. This is such an awful disease.
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Most of my friends were work related in one way or another or family. I retired 2 years ago to take care of my wife so I had less in common with a lot of them and they slowly dropped off. My wife was having delusions about some of the family so they stopped coming around to help keep her calm. Then when she had a stoke last year and moved into MC I was left home alone. I was very sad and lonely for a while, but unfortunately I am starting to get used to it. It is unfortunate because I know it is not good for me physically or mentally so I am forcing myself to get out a little and hopefully it will grow to where I have a life with happiness again. I think the desire to want to get out is a sign that you still have a drive for life to live in you, and that is good.
Stay strong
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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