The Ups and Downs of Today




I had arranged to take my husband (for whom I am caregiver, he has Parkinson's disease) to the local day program for the elderly. He spent 4 hours there, from 10:30 to 2:30, including lunch and a meeting of veterans.
I felt like you feel when you leave a kindergartner off for the day--both worried and exhilarated. I went shopping, where I tried on a whoooooooole bunch of teeny weeny clothes, and bought two new smaller bras and one top. I wore my kickin' size 14 jeans and a top from last winter that was too big.
I went to pick up my husband and had to talk with the financial people, since I can't really afford to send him there 2 days a week like I want to. Turns out they can help me out enough to where I can afford it! I was so relieved I sat there in the financial office and cried.
Ha ha. Cried too soon, and for the wrong reason. When I picked up my husband and put him in the car to take him home, he was strangely quiet. I finally asked, "So what did you like about today?" and his morose answer was, "NOTHING."
I felt my heart sink within me. Sure enough, he doesn't want anything to do with this program. As it is, he is gone 3 days a week (at another program) and home four days a week, and it is getting to be too much for me to have him around 4 complete days in a row. I feel like the only way I can make it for the long haul is to have him gone to a program 5 days a week, and home in the evenings and all day for two days.
He is really bucking me on this. I told him I need for him to go for my sake, and he just doesn't want to go. How do I convince him to go? I stated as plainly as I could, "I need for you to go to this program two days a week. This is getting to be too much for me."
I enjoyed shopping so much. Funny, I stood outside the store "The Limited" and I could barely bring myself to go inside (I've never been in there, because there are no plus sizes there). It was like this glass wall at the entrance I couldn't go past! I just stood there!
*sigh* need some cyber hugs pleez
pp
Aww Nancy I am sending big hugs across the miles as well as some strength and patience as you deal with your husband.
Most people don't understand how imperative it is for caregivers to take care of their own needs or they get burnt out and have nothing left to give. Is there someone else who can talk to hubby and help him understand that you need this time on your own so you can keep caring for him at home as long as possible? Another thought is to ask him why he is so adamant about not going back. It could be something small and adjustments can be made so the two of you are content with this situation.
I feel for you my friend and don't ever feel guilty for doing what you need to do for both of you. He is dealing with his disease and you are dealing with just as much by taking care of him. The alternative would be to have him cared for full time in a facility and I'm sure neither of you wants that so I hope he will relent especially since you are getting a break on the price and care like this is not cheap.
Hugs,
Mickie
Most people don't understand how imperative it is for caregivers to take care of their own needs or they get burnt out and have nothing left to give. Is there someone else who can talk to hubby and help him understand that you need this time on your own so you can keep caring for him at home as long as possible? Another thought is to ask him why he is so adamant about not going back. It could be something small and adjustments can be made so the two of you are content with this situation.
I feel for you my friend and don't ever feel guilty for doing what you need to do for both of you. He is dealing with his disease and you are dealing with just as much by taking care of him. The alternative would be to have him cared for full time in a facility and I'm sure neither of you wants that so I hope he will relent especially since you are getting a break on the price and care like this is not cheap.
Hugs,
Mickie
Oh gosh Mickie, you look great!

KAREN W.
I LOVE MY DS!!!!!
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I am glad that you had some great things in your day today. Shopping at new stores is such an adrenalin boost isn't it.
Please don't take this the wrong way, however my uncle had Parkinsons and it was horrible. However he was never in programs. He had all his mental faculties however the constant tremors were very sad and horrible for him. What kind of program does he go to?
Please don't take this the wrong way, however my uncle had Parkinsons and it was horrible. However he was never in programs. He had all his mental faculties however the constant tremors were very sad and horrible for him. What kind of program does he go to?
cyber hugs coming your way.
Not sure how to say this, but I don't think your husband has a say in this. You NEED for him to go--not want, not it would be cool, you NEED him to go. I, at the very least, think he could give it a few more times before he makes a final judgement on it. That might be a good compromise. AND once he gives it a week or two, he may see how much more rested you are and may decide it is best for you, and ultimately him.
Not sure how to say this, but I don't think your husband has a say in this. You NEED for him to go--not want, not it would be cool, you NEED him to go. I, at the very least, think he could give it a few more times before he makes a final judgement on it. That might be a good compromise. AND once he gives it a week or two, he may see how much more rested you are and may decide it is best for you, and ultimately him.
I'm so sorry you have to deal with this every day. I cannot imagine what that would be like. But he needs to realize that he needs to do this for you. It is only 4 hours twice a week. Kids don't always want to go to school either, but htey have to. Try to be firm with him and tell him this is how it is going to be, It is just as much about you as it is about him.
Glad you had so much fun shopping, nothing like a little retail therapy to brighten the day!
-Wanda
Glad you had so much fun shopping, nothing like a little retail therapy to brighten the day!
-Wanda
An anecdotal (true) story:
My dad, widowed, brought his mom into his home to live with him. He cared for her 24/7 for close to a year. It started out great. Then the reality of the situation set in. He was still working and could not be there for her all the time. Also, he was so tired after work and had to be there for her complete care. It became overwhelming. She would fall out of bed while he was at work and she would push the button around her neck for help. It got to the point that he resented being a caregiver around the clock with no respite and she, besides feeling gulity for being a "burden", needed better care.
Long story short, they agreed to give a nursing home a try. He got the rest he deserved and could visit her frequently and enjoy his visits with her as a son and not a provider. She had fresh caregivers around the clock and was doted upon constantly and thrived from all the attention she received. Every time he went to visit her she had freshly painted nails and a perfect hair-do. She was clean and happy and socializing all day. She regained her smile. He was able to go on vacation and not feel the self-imposed gulit of neglect.
It is impossible to be a caregiver 24/7. Additionally, someone requiring vigilant care will soon realize the benefits of having several alternating caregivers whose attention is focused directly on them and are there to serve. Your care for your husband is exemplary. To keep it that way, you need a break on a regular basis where you can leave your caregiving mode behind and focus on yourself. You'll both be happier and healthier because of it. Your husband seems to be very mentally alert and capable of understanding that his attending daycare for your sake is a very fair trade for your caregiving the rest of the time. It may take him a while to understand see the benefits -- the most important one possibly being your renewed spirit when you pick him up and a renewal of your relationship as husband and wife.
God bless you for your selflessness. In the long-run, daycare is as good for him as it is for you -- if not better.
My dad, widowed, brought his mom into his home to live with him. He cared for her 24/7 for close to a year. It started out great. Then the reality of the situation set in. He was still working and could not be there for her all the time. Also, he was so tired after work and had to be there for her complete care. It became overwhelming. She would fall out of bed while he was at work and she would push the button around her neck for help. It got to the point that he resented being a caregiver around the clock with no respite and she, besides feeling gulity for being a "burden", needed better care.
Long story short, they agreed to give a nursing home a try. He got the rest he deserved and could visit her frequently and enjoy his visits with her as a son and not a provider. She had fresh caregivers around the clock and was doted upon constantly and thrived from all the attention she received. Every time he went to visit her she had freshly painted nails and a perfect hair-do. She was clean and happy and socializing all day. She regained her smile. He was able to go on vacation and not feel the self-imposed gulit of neglect.
It is impossible to be a caregiver 24/7. Additionally, someone requiring vigilant care will soon realize the benefits of having several alternating caregivers whose attention is focused directly on them and are there to serve. Your care for your husband is exemplary. To keep it that way, you need a break on a regular basis where you can leave your caregiving mode behind and focus on yourself. You'll both be happier and healthier because of it. Your husband seems to be very mentally alert and capable of understanding that his attending daycare for your sake is a very fair trade for your caregiving the rest of the time. It may take him a while to understand see the benefits -- the most important one possibly being your renewed spirit when you pick him up and a renewal of your relationship as husband and wife.
God bless you for your selflessness. In the long-run, daycare is as good for him as it is for you -- if not better.
Aw hell Nancy, that sucks. Nothing else for it, it just sucks. BUT you're the one in charge, remember? You smile and say, "You don't have to like it, but you have to go." Otherwise, there won't be enough of you left to do evenings and weekends.
That said, huuuuuuuuuuuge HUGS to you and congrats on shopping at The Limited!
That said, huuuuuuuuuuuge HUGS to you and congrats on shopping at The Limited!