I am constantly trying to figure out Barry’s clothing. His care center closet is sometimes full and other times practically empty. When I see the lady on the first floor wearing one of his shirts, I know why his closet is bare. Who else is wearing his stuff?

I can never figure out what to do when he is running low on something. I know I will no longer bring any nice shirts just so that gal can wear them! Last week, I noticed he had only one pair of pants — and they were huge. They were pants from back when he lived at home and was eating compulsively. The old waffle days! Those days are long gone and now he is very thin from constantly moving his body.

A couple weeks ago, I went through the closet and drawers in his room. I packed up clothes that were too big and finally got rid of the ladies sweatshirt that I found Barry wearing a couple of times a week even though I told the aides it wasn’t his. It was too small and obviously made for a woman. It made me want to cry seeing Barry in that sweatshirt. The smart thing for me to have done would have been to take it off him right then and there. However, it takes a couple of people to dress him so I couldn’t do it on my own. I remained hopeful that the afternoon aides would tell the morning aides who dress him that it was not his shirt! No luck. Week after week that shirt found its way back on Barry — just as his shirts found their way to the first floor lady! Never again. I took that damn sweatshirt and tossed it!

I packed up his winter clothes, asking myself whether he would ever need them again. Should I save the sweaters and fleece vests? Will he be alive next winter, and, if he is, will he ever go outside?

He needed more pants. The challenge is finding the right size now. Barry is very thin but he wears bulky diapers. I think there should be special clothing shops for people in nursing homes. I still try to dress him like he was before frontotemporal dementia (FTD). Does it really matter
How he looks? Does he care?

On the way home, I shopped for pants. Should I just get sweatpants or pajama bottoms? I feel bad that he looks so disheveled and unmatched each day. I know he would hate looking the way he does. I ended up buying him one pair of regular pants, having no idea how long he would even need these or any clothing, for that matter.

Back home, I pulled out a box from my storage unit that was filled with Barry’s old neckties. As I looked through them, I remembered the suits that coordinated which each one. I have to admit, I loved the old days when he left for work in a suit and tie. When Barry sold his company, he was happy to be done with dressing up, but I missed seeing him looking so sharp. My boys aren’t interested in having the ties, and I know Barry will never wear them again.

So I bagged up the ties along with his winter stuff for donation. But as I write this weeks later, the bag still sits in my living room. It just feels wrong to get rid of the stuff while Barry is still alive. So there it sits as a constant reminder of the past and of how little I know about what the future holds for us.

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17 comments on “OUR JOURNEY – TIES
  1. Polly says:

    Hi Nancy,
    I have a suggestion for Barry’s ties. The fabric from them could be used in making a lovely quilt. That way, you still have the familiarity of the prints and colors that bring fond memories and a fun and useful item. It could be a twin quilt for a grandchild or a lap quilt for yourself, the possibilities are endless.

    • Maple MN says:

      Our family has several pillows where one side of the cover is made with some of my father in law’s ties. They were lovely fabric and it’s nice to have the reminder of him.

  2. Beth-Ann Bloom says:

    Polly’s suggestion is brilliant!

    As an old nursing home worker I vote for the easiest clothes to get on and off which are also likely to be the most comfy for Barry.

    Would nametags in the clothes like we had at camp be of any help?

    Many of us stumble on the big existential issues in life but stick to nametags and elastic waists to control what we can.

  3. Deb Massie says:

    I’ve seen ties made into beautiful pillows, also.

  4. Carole K. Bengtson says:

    Just talking to friends today and he was telling about his grandmother who had alzheimers and in a special unit. He couldn’t find her one day so walking around he heard her voice and she was in another residents room taking clothes out of the closet explaining where she had worn them last and how much she would sell them. The other lady was happy and chatty and so glad to have ‘new clothes’ (which were her’s anyway). I have been employed with elderly people and as we would tell the families and as the woman above suggested, get something comfortable and mark them. The laundry person doesn’t know, the aids are too busy and nursing staff can’t be looking for clothes. Also if you have a ‘care conference’ make note of this problem and see what they say to do. The families were happy to get some nice sweat outfits for their females and comfortable ones for their males. You have to keep reminding yourself that he is in his ‘own space’ now and what use to be can’t ever be done and you wear yourself out doing the ‘should or shouldn’t I’ I’ve had to go through closets and drawers for loved ones and kept saying ‘they were always such giving people and would be thrilled to know that someone else can use those clothes.’ Blessings, carole

  5. Nancy says:

    Check the laundry facility. I found many garments down there with workers missing the name I wrote in block sharpie letters. They also gave my dad the clothes of his friends after they moved on, which explained some random outfits. Zubaz are making a comeback! A woman in CT weaves chair seats from ties. Will send you the link. They’re great!

  6. As a student I worked in the local “mental hospital.” (That’s what it was called back then!) I was a temporary aid on a ward full of elderly ladies with dementia, and one 40-something woman who was the mother of one of my sister’s school friends and had early-onset Alzheimer’s disease. Her husband would visit and be extremely distressed to find his wife wearing old-fashioned clothing that wasn’t hers. I can’t tell you how often he gave me a bag of her clothes and pleaded with me to make sure she was dressed in them and yet somehow they would always go missing. There’s something about clothing that adds dignity, that preserves a vestige of what once was. Theirs was a heartbreaking situation and he had no control over it but I think seeing her in other people’s clothes was the last straw. I admire your frankness and grit in dealing with your situation.

  7. Susan says:

    When my mom, who suffered from dementia, was in a facility in Nashville, they actually ironed name tags on all her clothes…even her socks! If something that didn’t belong to her was accidentally put in with her laundry, at least we knew who it belonged to. It helped when I moved her here that it was already done. New items I purchased for here here just had my Sharpie marked names in them. When she passed away shortly after coming here (Minnesota), I was able to donate her items to the memory care facility to be used for residents who might need additional items…especially the things I had just purchased. Just don’t try to remove the ironed on tags! I tried to do so with a few items, but no luck. Just had to use the Sharpie again to cover up her name.

  8. Shari Malofsky says:

    it;s amazing how much we see through our own eyes – especially with those we love, who cannot tell us how they are ‘seeing’ things anymore.

    with clothing, it’s almost as if my husband normalizes in my vision when he is clean, and wearing clothes he looks good in. he looks young (he IS young – 64) in his jeans and shirt tucked in, sneakers, etc. even though i am the one who had to shower him, choose the clothing, and navigate his putting it all on, he looks a bit like he did years ago.

    until i look into his eyes, which used to be brown and sparkling, and now are dull and distant.

    i still love his hands, and holding them.

  9. Keep drawing. Keep making art from this life. Keep on.

  10. Pam Schultz says:

    Making pillows from ties would not be such a big project. From my experience working with individuals with dementia, comments about elastic waists seem to work the best. It is very sad however, to think of your well dressed loved one in sweats or pj bottoms. I suppose the positive spin could be that it is most important that Barry be comfortable in clothing easy for the staff to take on and off. But oh, the heart ache for you. Missing, lost laundry has always been a care center issue even with name tags, I cannot understand why there is no apparent solution. Hugs to you

  11. Ann Carlson says:

    If you want, store the ties here at 3700. We can keep them til you or I decide what neat thing to do with them!

  12. Cathy Retzer says:

    I’m one of the librarians from central WI whose schools you’ve visited many times. I’ve been following your blog for a long times and am finally responding because I think I can offer some help.
    My father had Lewy body dementia and spent 3 years in a secure unit. Regarding missing clothes — we never had much of a problem, although his wedding ring was missing for several weeks (was found in a drawer in the laundry). At both facilities he was at, his clothes were marked. That helped.
    Now, regarding clothes. Dad was a teacher so was always dressed in short sleeved button down shirts that you may wear with a tie. As the dementia progressed, he became very stiff and hard to dress. I discovered a mail order company named Buck & Buck. They sell a lot of adaptive clothing. We were able to buy the button down shirts that looked like the regular shirts, but were open in the back, closed with Velcro-so much easier to dress. They also have adaptive pants–dressy looking (not sweat pants). Check them out online.
    Regarding the ties, after Dad’s death, we didn’t know what to do with his clothes. His adaptive clothes (including bibs Mom made from dark towels, as he drooled all the time and could soak the front of his shirt in half an hour), went to the secure unit for someone who didn’t have family to use. His jeans and other casual clothes went to Easter Seals, who have a truck come around once a month to pick up donations. His dress clothes (and ties) went to a career closet, to help someone that needed nice clothes for an interview or to get started in a new job.
    I hope these suggestions help.

  13. Linda Frankenstein says:

    My mother has dementia and I am always trying to buy her something easy to wear. I had good luck finding clothes for her by searching the web. I used the search words, “Clothes for people with dementia.” Lots of shirts have velcro openings in the back for ease in dressing. I also mark all of her stuff with cloth tags and black magic marker.

  14. Mary Sue Boelter Lienke says:

    Hi Nancy:
    How it pains me to hear about you and Barry! You are such an incredible inspiration “putting one foot in front of the other”! I do know the experience about nursing homes and mentally challenged people!! My Mother had Dementia & the same thing happened to her clothes. She had all these beautiful night gowns, and clothes that always became missing. We would mark them too!! We’d look in her closet and she would have clothes from other people in there!! She always seemed to look mismatched yet we bought outfits that matched!!
    We were told that “she picks our her clothes” – which never made sense to us!! Anyway, I felt blessed that Mother had people taking care of her & most really did care about her!! Challenging job for them!!

    Take good care. I so enjoy you.

  15. Patsy Shaughnessy says:

    Polly’s idea is more practical than mine, but when I was in high school I found a box of my Dad’s ties that he no longer wore. I sewed them together and made a great skirt. I wish I still had it!

    I also had a hard time finding pants for my brother (also in diapers). I remember finding some that had a snap and zipper, but they also had elastic all the way around the waist. I bought one size up. I don’t remember exactly where I bought them, but it might have been Penny’s. I always carried a laundry proof marker with me so I could mark his things. He was in a wheel chair and I even started writing his name on the back of his shirt. You couldn’t see it when he was in his chair and they didn’t put those on someone else.

  16. Thank you all for the good ideas! He was wearing a pair of pants today that I have no idea where they came from. I will save the ties and plan to make something out of them. I think some type of purse would be nice.

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