Shrinking world

Tetonman · December 11

Caring for DW. Currently in stage 4 and some 5 conditions.

This is more of a release and venting for me than a question.

The longer this goes on the smaller the world becomes. Over the years friends family become more distant. Partly because you're no longer able do the things that we used to. It's even to the point that even when she wants to go for a drive the area that we can drive to it gets smaller and smaller.

Daughter was was here a couple of weeks ago and that was good for her. But almost all the time was spent on the couch.

Jgirl57 · December 11

welcome! Glad you found it and vented. You are correct, for many, your world does get smaller for all the reasons you mentioned. We are in stage 6 and our big excitement is getting a burger through drive thru and watching planes take off and land at a nearby airport while we eat. Keep reading and venting. Sorry you need to be part of the forum family

Biggles · December 11

I’m hearing loud and clear, no matter how hard I try I can feel my world getting smaller and harder. It’s not an interesting or exciting time visiting us anymore. Friends and family are distancing themselves more and more. My DH is not capable of being interested in any one or anything anymore. Just talking to a friend 500kls away her husband is off playing jazz at an old folkes home with his grandson as sound coordinator happy days not meant for us. So dam sad!

lenbury · December 11

A very appropriate phrase.....thanks for sharing.

Diane Cohen · December 11

Today is the first time that I revealed my suspicions to DH. If I'm honest, I would say that his deterioration began a few years ago, but has progressed rapidly since he retired a year ago. He has not been officially diagnosed, but I plan to call the doctor tomorrow to discuss. There's a part of me that wants to ignore the obvious, but he has most of the symptoms of stage 5 (moderately severe.). I fear that this is going to be a long hard journey.

Carl46 · December 11

https://alzconnected.org/discussion/comment/230863#Comment_230863

Sorry to say, this typically is a long hard journey.

The small world of the disabled is a familiar concept to people who have been disabled since birth and to their caretakers, as well as to people who suffer catastrophic injuries. With dementia, the formerly large world shrinks and shrinks, for the PWDs and for the caretakers. Our long trip is 25 miles to the RCF in which our disabled son lives, and I know which service station near the RCF to visit; the one with a "one-holer" ladies' room I can enter with DW to help her. People with physical disabilities learn where the wheelchair accessible restrooms are, etc.

My wife was once able to book a flight to Los Angeles or Dallas and go. Now, she can't always find the bathroom in her own house. Shrinking world indeed.

White Crane · December 11

Hi, Tetonman, and welcome to the forum. I'm sorry you need to be here but you will find a lot of understanding, help, and encouragement here. My DH is now in MC but I understand about your world shrinking. Like you, many of our friends distanced themselves. There were a precious few who stayed and they were a Godsend. I used to take DH for rides when the weather was nice. We would stop and get ice cream and maybe go to a nearby playground where he could watch the children play. We were birdwatchers so I took him birding as long as he seemed to enjoy it. We played endless games of rummy and watched the same movies on TV over and over. It was hard but worth it. I hope you keep posting and asking questions and expressing whatever you are feeling. It helps to know others understand.

Brenda

annie51 · December 11

Welcome Tetonman. We understand the shrinking world - and your need to vent. It’s a long boring day most days as DW’s abilities and interests shrink as well. Car rides are shorter as his patience gets thinner. Luckily jigsaw puzzles and repeated movies can still occupy him. Such a tough journey. This forum is a lifeline!

fmb · December 12

Welcome to the forum. Feel free to vent any time. We get it.

I notice that you tagged your post "Grief". We grieve not only the loss of the persona of our loved one, but we also grieve all that we have given up or lost due to this cruel illness. My life revolves around my DH's care even though he is in an ALF with enhanced services and hospice care. Our hospice team has become my family, replacing most of DH's blood family who have fallen away. And in the end, I will lose the hospice team, having yet another loss to grieve.

Shrinking world

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