I've realized that as the sole caregiver I am meeting his physical needs, such as feeding, bathing, etc. However, I am sometimes overwhelmed to the point of tears dealing with his dementia and Parkinsons. Given that I find it hard to be ever "upbeat", I'm thinking his mood is mirroring mine. His dementia is fairly advanced but there are times when he has insights into his conditions and says "I'm a mess", and wanting to die (and wants me to go with him). When someone is physically limited (with dementia)and discouraged, how do you keep his spirits up? Unfortunately, he has no hobbies - this terrible disease took away his golf, swimming, gardening and woodworking. He sits all day, or sleeps; has no interest in anything. It's hard to pretend that I'm happy - he sees that I'm very stressed and deep down he feels that he is why.
Now of course I realize that that can be easier said than done, so it's important that you are taking time away just for yourself, to do fun things that you enjoy, so you will be better able to present that good mood.
And if that means that you have to hire someone to come in and sit with him so you can get away, then so be it. It will be worth every penny.
You must make yourself a priority if you are to continue on this caregiving journey with your husband. You both will benefit if you do so.
I wish you the very best.
I doubt that he can tell your not upbeat as long as you're not mean to him.
1st: WELCOME! To the best faceless family you’ll never meet here on agingcare.com! You will find luv, support, and wisdom from the AMAZING folks here; unconditionally and judgement free! Glad you’re here.
2nd: Although I do not have personal experience with either dementia or Parkinson’s, (I cared for my narcissistic, toxic mother for over 15 years), I have learnedA LOT here and have some ideas that might help you and your husband. The tricky part, my friend, is finding motivation and mindset so you can try different things- as we know all to well, the depression etc that consumes us during our caregiver journey, is very challenging and debilitating; so plan, work up to, or whatever you need to do to try to make it happen. It will be a ten fold for both of you.
3rd: I hope these will help-
Music. Put on your pretty dress, get “dolled” up, and with your beautiful smile, strut yourself out to your husband, and play songs you both like. And DANCE together, either standing up or sitting, go through the motions of dancing. Clap and tap to the beat together, music is such a good, universal thing! This will not only make both of you smile, but also allow you some crucial ‘girl’ time while you’re preparing for your presentation to your hubby.
Crafts. Your husband might not be able to woodwork, but I bet the two of you could make some cool things stringing pasta with yarn: necklaces, something to hang on your walls, garland for a holiday tree? Turn off the tv, sit with him equipped with some yarn and penne and see what you can create together. Yes, just like when we were kids! It will engage hubby and give you something to cherish. Heck, get some washable paints, have him stir them to make colors, put your hand on his to help guide him to stir, paint or both.
Outdoors. Make some tea or coffee and head outside to sit together and watch the sunset. Fresh air is always good and it might just spark something in your husband that leads to reminiscing, which is definitely good!
Daily routine. Engage him in his daily care activities when appropriate like setting up his toothbrush with paste on it and stand with him guiding his hand to brush. Set his clothes out and together, say which item goes on in what order while dressing.
Take small bites at your pace when trying these types of things- one activity one day, the next week one day another activity, and so on. The caregiver journey is, by far, one of the most challenging things we’ll ever do in our lives; it’s physically and mentally draining for all involved, it will create guilt, thoughts and feelings only other caregivers can understand, it is an unlimited pass on the scariest roller coaster in your world. We are SO GLAD YOU ARE HERE.
susan xoxoxo
try to involve others .. instead of just visiting see if friends can take husband for ice cream or walk in park… or hire someone to do same.
one of benefits of being in good care home was I was confident my husband had safest best care and was always surrounded by people and activities to interact … and I was there everyday without all the grunt work . It’s a mistake to think those with dementia do not realize their situation … they do and it’s extremely depressing for them …
try to create more stimulation (music
was great Alexa)
it’s a very isolating situation for both of you .
best luck .. but you’re on a good site !!
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