It Is A Bad Day So Far


English: Bassett queen size box-spring on meta...

Oh my, all of this help coming so often to help Al be able to walk longer and all Al is doing is showing his fangs. He has drawn his fist, gritted his teeth, and cussed and gotten mad. The first therapist has been here and now gone, and Al  has discovered his mattress and box springs is going to be leaning up against the wall, forcing some of his items to be removed from the wall for a period of time, as there is no other place to place his bedding.

Please pray for us, as I am a nervous wreck, almost in tears. We have the nurse and another therapist to go through, plus the set up of the hospital bed and tearing down the old bed.

Please……………….

49 thoughts on “It Is A Bad Day So Far

  1. Terry,
    I am so sorry to hear about how difficult this is for you and for Al. It very, very hard for our loved ones to adjust to the change that comes with illness and the impact, as you know, is not only for the person with illness but for the caregiver and family as well. Each change is often reflective of loss- loss of independence, loss of personal possessions, loss of personhood, the list can go on and on. While it doesn’t change the reality, sometimes it is helpful to recognize and understand that this is a process of loss and grief for both of you. It may also be helpful to always remember that Al’s anger is at his situation, not at you. It is in our nature as human beings to misdirect our anger at those we love and trust the most. I have a couple of thoughts that might be helpful for you- to the extent possible and without jeopardizing Al and your safety, it might be helpful to transition changes like bringing into medical equipment one step at a time rather than making too many changes at one time; – as medical equipment comes into the home, to the extent possible try to incorporate favorite familiar items into the environment; and I am wondering if you can talk to the home care team about scheduling their visits in a different manner- perhaps alternating days so that you don’t have so many people coming on the same day (for example, the nurse and aide one day; the physical therapist and aide the next; the speech therapist and aide the next, etc). Please know that I think about and pray for you and Al every day.
    Terre

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    • i believe from what i am told so far, that the nurse will b here on fridays for sure, and one other day, the occupational therapist told me she would be here on Tuesdays and Thursdays. This afternoon I will find out when the physical therapist will be here and am hoping it is on opposite days and will ask. the shower girl is here M,W,F, and I don’t know when the speech therapist will be here , she is one who has not been here as of yet. Al doesn’t understand that all this is for his safety and building of any muscles he still has. all he sees is death before him and he is in his room crying and wanting to die. my head is splitting. i so appreciate all of the help for him, but i would beg that someone comes to talk to me

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      • Terry,
        You may want to inquire about talking with the home care social worker. She can help you explore resources in the community for respite and support, while also providing you with the opportunity to talk. She can also be an advocate for coordinating the schedules of the home care team. I understand why you are overwhelmed with all of the visits- coordinating all of this is challenging. I am hopeful that things will fall into a rhythm for you and Al. Please take care of yourself.
        Terre

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      • Hello Terre, You have been so kind to me and so helpful, that I wanted to nominate you for the Silver Quill Blogging Award. I am hoping that you will accept this and to also follow the directions within the post. Congratulations my friend!

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      • Thank you Terry. It has been my honor and priviledge to support you and Al through this journey. I have learned much about the trials and tribulations,as well as the joy and happiness, of caregiving from you and other caregiver bloggers. Our team gratefully acknowledges and accepts this award. I’ll write about it for tomorrow’s post.
        Terre

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      • is the social worker at the main number of the home health care? it looks like now as of today, the nurse will be here T-F,. one therapist M,W,F, and the other therapist, T,T. so I hope this helps, one of the nurses pushed him back in his seat too fast today, and hurt his legs, he was crying and yelling at her. i reminded her that he is very slow in movement, and he probably stiffened up out of fear of not being in control of sitting down……..

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  2. With so many changes taking place, his emotions may be the only things Al feels like he can control. Still, it makes it harder on you. I am lifting up a prayer for you both right now. May the afternoon bring a change of attitude for Al and some respite for you, my friend. Sandy

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    • thank you Sandy. He is a mess right now, let me tell you. I took some of his belongings off of the wall and hung them in his bathroom, and he just going on about dying………………Lord help us, please…………..

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  3. Praying for you Terry. Stay calm so you can be at peace. Today is UN’s International Peace Day, so everyone is praying for peace all over the world that includes peace in your home.

    BE ENCOURAGED! BE BLESSED!

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    • thank you so much Francine. I have got Al’s bedroom as prepared as I can for the new bed coming in and he is in their telling me he wants to die, so I had to step back and so am spending some time on here. i don’t want to leave him by himself, but i can’t take the death thing all day long

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  4. I knew when you talked about the bed set-up and therapy…it was not going to be a good scene… I so feel for you…and wish I was closer to help…Everyone that’s near you …
    should quit just sympathizing…and give you some physical help…Easy to say I know…I’ve helped my sister clean her house…drive her places…help with lifting…It’s too bad you don’t have “me”…ha, ha…
    I see your delemma!…
    Want to let you know It was nice meeting you… Al was just as I pictured… and You are a sweetheart!… So bad you have to be on your own …NOT RIGHT!…mkg

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    • i want to let you know how much it meant to me for you both to drive here. i am burning the candle right now as we speak. it smells wonderful, and i have the towels hanging. thank u so much for that. i felt so special. Al is in his room crying his eyes out, as part of him does not understand what is going on, and why did i take things off his wall, he is letting me know that he wants to die, so i came out here and got on the pc to ease my neck. i wish the pains would go away and i wish you were here also. i wish everything was different. love ya and big hugs

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  5. Terry, don’t worry …. the hospital bed is so each to get in – and it will be so good for him – nothing to put together … my mum has one. She had in slept in a bed for over 3,5 years – because the pain in her hips – she sat up and slept .. hospital bed .. she takes a nap in the afternoon and sleeps in through the whole night. Wonderful. Tearing down the old – don’t you have neighbors or your son to help you. Just dump the thing. It will okay, Terry …

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    • i wish it were that easy. i begged on the streets to get help with the roofing job remember? i am not afraid to ask. my son who lives close works all day and says he is too tired when he gets home. my other son is ill and doesn’t live too close, and my daughter lives in another state. i live surrounded by old people who are ill themselves, and one even has Parkinson’s. everyone in their eighties around here, so there is no help. i have even went to our old church and asked for help, and they did not help

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      • Jesus, can’t believe it. This time is’t only a bed .. and not whole roof. I think you should ask the church again. Too tired to help with bed … he are spoiled.

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      • you are so right! i am going to start asking and i am going to ask until i find someone who will help me by letting me out of here for a bit!!!!!
        thank you Viveka. i know you care.

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  6. Sorry you and Al are having to go through this Terry. I will be praying for both of you.. If I lived closer I would be helping you. I am in southcentral Indiana. Your son and your church should be ashamed for not offering help right off the bat!

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    • i feel this way also. I am ashamed that no one wants to help. i try to b there for others who need help and now i need the help. would you believe that i am finally done with visitors? it is 5:55pm

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  7. change is so hard for most people, can’t imagine how difficult it is for both of you. al is used to you and he knows how to get his way, having all these new people that are not as easily convinced will be very difficult at first. sending you all the strength and compassion that can be sent!

    hang in there, once the dust settles you will be relieved and better for it.

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  8. Terry, I pray that the Lord will lead you into green pastures for rest and beside still waters for peace. I pray that Al will hear the Lord speaking peace into his spirit too. Just take it one minute at a time. Change often upsets people with dementia, but once his room is settled again Al should settle down. I pray that something really special will happen to bring you some encouragement. And I pray that your headache will be gone, in the name of Jesus. God bless you and Al and keep you in the hollow of His hand.

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  9. Praying with you, sweet Terry. This was a LOT for one day. I know it would’ve been too much for all of us. God bless you and hold you tight, giving you and Al peace and rest, comfort and grace. love you.

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  10. I’m so sorry that you and Al are going through this Terry. He needs time to adjust, and PD and dementia make for a horrible combination of nerves and confusion.

    Is there a local carer’s support group that you could join? Have you been offered respite care? These are things that you really need to try to put into place for your own sanity xxx

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    • there is nothing here for support, although there is one group, very small, but it only consist of teaching what PD is, and we know first hand what it is. I want to sometimes scream at my children, or the world, to please help me, give me some time away from here……………

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