Feel like I’m becoming reclusive

KathyF1

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?

Biggles

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.

mrsdee13

I hope you find the strength to get through this trying time. I hope you find a pathway to LIVE again and be happy.

Bailey's Mom

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!

ronda b

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.

CindyBum

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.

Bailey's Mom

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!

AmmaT

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❤️

jehjeh

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

annie51

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…

WIGO23

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.

Bailey's Mom

https://alzconnected.org/discussion/comment/233239#Comment_233239

Ditto…I am dying a slow death of boredom, but it is better than the anxiety of trying to do anything.

OhDear

https://alzconnected.org/discussion/comment/233170#Comment_233170

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.

Belle

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.

jehjeh

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.

Tetonman

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

Abby627

https://alzconnected.org/discussion/comment/233270#Comment_233270

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.

BPS

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

Russinator

It's the same way in our house.

Biggles

https://alzconnected.org/discussion/comment/233192#Comment_233192

You have noted a major floor with the professional care givers and that is they haven’t a clue about this debilitating disease. They don’t know anything about how our partners feel, that a few pieces of the puzzle in their brain are missing, but the rest for a time is still there, so thoughts, words and thinking are scrambled, leaving us the caregivers to contend with the confusion, sadness and loneliness. It’s exhausting we were not trained for this or expected or wanted to be in this situation. We do it virtually alone with friends and relatives dropping away. Add to that professionals that haven’t a clue and there’s our life.

Biggles

I’m hearing you WYGO same same and so frustrating try ear pods your DH won’t know that you are listening to something, music you love or an audio book perhaps you can escape to another world for a few hours at least. Hang in there.

BPS

We are with someone but we are alone. We are married but not in a marriage relationship. life goes on while it stands still. We will never get this time back. As I age the I see less hope for the future.

Belle

https://alzconnected.org/discussion/comment/233314#Comment_233314

My DH has been having significant issues for the last 5 years or so but there were signs much sooner. I was overseeing the care of another family member before it became obvious he was having issues. So basically I've been doing some type of caregiving for over a decade.

Arrowhead

Good news, it won't last forever. The change is not permanent. I was feeling the same way until I put my wife in memory care. I'm still tied to her, but not 24/7. When you're relieved from constant caregiving, you will probably crave to do what you once did and will return to it. Doing the things by myself, that I used to do with my wife, are not as enjoyable, but are still enjoyable. Your husband would not want you to stop living without him. When the time comes, you will live again.

Dunno

I hope you’re right, Arrowhead. I’ve been in a pretty deep funk since placing my DW in MC last August. The loneliness is brutal.

fmb

https://alzconnected.org/discussion/comment/233645#Comment_233645

DH has not lived in our home for over 15 months, and I still get very lonely at times. The key for me is to plan simple outings and force myself to get out of the house and around other people. I sometimes have to treat it like a mandatory appointment to get me moving. Even something as simple as having lunch at the Costco food court and people watching helps me remember that I'm not alone in the world. Many people find that becoming involved in volunteer work helps by giving them a reason to be out and around others while doing something they find worthwhile. My widowed friend has begun volunteering with his local Friends of the Library, exercises at the Y, and goes to veterans events in his community (he's a Vietnam vet).

Carl46

One of my best friends lost her husband to Alzheimer's a couple of years ago. She joined an online dating service, has remarried, and is happy again. She's 71 and has some health problems, he's a few years younger and has some health problems, and they take care of each other. There can be life after Alzheimer's.