Random ramblings from the new normal.
The first lot of medication from the neurologist did not help at all. It just seemed to ramp things up to the extent that I contacted her at 9:30 on a Saturday evening to find out if we could stop. The new medication is much better. My husband is calmer, and making more sense, although we still have sessions where I am trying to guess what he is talking about, and then guess what he is trying to say about it.
We go on daily walks. Before the new medication this was challenging. He had three speeds. Slow, Stop and Stop-and-Argue, which can be nerve wracking when there is a car coming. This has improved, although his judgement is still affected. And he keeps wanting to drive again…
Shaving is more complicated than you might think. My husband is beardless for the first time in decades. (I cannot hang a picture straight, and this is worse.)
I can mow a lawn. Sort of. At least it’s shorter.
My son is not coping well. And he won’t hear of therapy, counselling or any version thereof.
My husband and I went for counselling – he does get frustrated, and there were some things I wanted to talk through as well. Unfortunately the counselor seems to have decided she knows what’s best for me. Go to the gym? It makes me exhausted just thinking about it. ‘Getting rid of negative energies’. Riiiiiight. I’ll stick to my knitting and tatting as sanity savers. (Her opinion of these is not high. Around the level of playing hopscotch and pat-a cake) Even if I am engaged in a game of thread chicken with the tatting that is probably going to end up with a dead chicken.
I have a relative who phones occasionally and asks brightly ‘And how are you coping?’ A lot of the time I’m bloody well not coping. But I can’t even begin to explain. I just give up and say equally brightly ‘We’re going along!’
notewords 
Is there a “support group” around? Online or off. You might find some better understanding. It’s rough, I know. And I wish you well.
I will keep looking. Thanks for the good wishes.
I’m so sorry about what you are going through. I was told, years ago, that you have to shop around for the right counselor. I’d say this one is not the right one. Don’t give up. You always have us. 🙂
Can only second this – find a counsellor who understands you and knows where you are coming from. This one seems stuck in her ways.
I will keep looking. As I said somewhere else, that might be great advice, but not for me right now.
That I do. 😉
I will keep looking – No one counselor can be right for everyone.
That doesn’t sound good.
I hate the gym, but I cannot deny it helps my anxiety dramatically. I’m not on your therapist’s side, I’m just sayin. She doesn’t sound like the right fit for you.
It would probably be great advice for any number of people. Just not me right now. I don’t mind walking, and we do lots of that. 😉
Good on ya! 🙂
What a load of ‘doggy doo doos’ you are all having to plough through. Don’t know if changing the therapist is easy/expensive(?) but this one does certainly sound as though he/she is adding to the muck pile. Whatever can or can’t be done about that, please don’t stop going to the one you’ve got till you can sniff out a better fit, will you? Having no ‘support’, however dodgy, may just cause greater feelings of isolation for both of you, and your son may lose out on knowing that there could be assistance out there.
Keep on yelling out and we’ll hear you; even when our input may turn out to be so much more mess it carries with it all the good wishes we can muster 😉
We’re listening
All the best possible with lots of energy behind it
dfc
We will keep trying. Thanks for the good wishes and the energy! 😉
Any time
😉
I know this won’t help but I hope things get a little easier for you all soon.
All good wishes appreciated. They do help!
To find the right therapist is very important, and a hard work, but online there are good support groups to ask for.
Wish you all the best!
Sid
I’m thinking online might be an option, but I will keep trying locally first.
Thanks for the good wishes.
So glad you got the meds sorted out, and are able to go for walks. The gym is clearly out, but some kind of movement is helpful. Getting up and getting more yarn counts as movement. Just sayin’!
And the relative – s/he is trying to help maybe the only way they know how. If there is anything that really could help, maybe say “Actually, not so well today. I could really use someone to (insert helpful thing)” and see what happens. You might be pleasantly surprised.
Meanwhile feel free to rant here, we can help by listening, if nothing else.
Thank you – ranting does help!
I think the relative is trying to help. At least she does call. I’m just being a grouch…
Being a grouch is fine! And she probably is trying to help but doesn’t know how.
Hugs! 🙂
Congrats on mowing. That is using energy, and achieving an outcome. Maybe your son can help with the lawns. Tatting and knitting is your “me time” or “quiet time” so enjoy sitting and tatting any time you can spare. It is good for you, and therefore good for your family.
For everything else, either ignore or ask your relatives. Even if 9 out of 10 say far too busy, the 10th could say “happy to help”. A win for all of you. 🙂
Sound like a plan. Unfortunately my son has a physical handicap (he is paralyzed down one side) and so can’t help with mowing.
I’m certainly going to continue my tatting and knitting! The saga of the jersey will be posted at some stage… 😉
My parents have been taking care of my grandmother with dementia for 10 years. Part of this time I’ve lived with them. So all you describe sounds just so familiar to me. Even after 3 years since grandma’s passing I still feel this hopelessness and frustration. Poland does not offer anything when it comes to family support and elderly care, we had to fight for everything, including access to treatment, and family… well, their “help” was mostly also calling and asking how we were. Or sending a postcard from a religious sanctuary telling they’re praying for us.
I don’t know why I’m writing it – I guess I just want to let you know that I really understand the struggle and if you need to vent, or write, I will gladly listen. As others have said, support group would also be great, even just online – if not for just venting, they can often offer practical ideas for coping with specific situations. We found some group who helped us at the time when my grandma was super active but already not thinking clearly and had tendency to run away. Other than that, keep looking for a good therapist. My own therapist (I used to be in therapy because of my recurring depression) taught me that therapy is about me (or in your case, about you and your husband), and not about the therapist and their visions of what is best for you. You are the one who must find your own ways of dealing with stuff, therapist is there to help you, support you and navigate you, but not to tell you what to do and decide which coping methods are the only correct ones.
That was a long post and hope I didn’t write anything offensive or improper. All the best to you, I hope you find all the support you need!
Thank you so much for taking the time to comment in such detail. That is exactly what I feel about the therapist!
The phoning and asking also sounds so familiar…
It does help to hear from someone who has experienced something similar.
There is also very little in the way of support groups in this country, unless you live in a major city. I’m thinking more and more that online might be a solution.
Thanks again.
My therapist used to say that each person has their own experience and wisdom, and her role was not to challenge it but to help them find it. I really believe that it’s true! But it took me some time and a few failed attempts to find the right therapist, so keep searching, and surely you’ll find the right person too!
I hope you can also find a great support group and if you need to talk you can always write to me through the contact form on my blog. Take care!
Thanks!
Rant, vent, tat, crochet, walk, talk, find the “right” counselor, and maybe a handyman for the little things around the house. Don’t be afraid to ask for help, and it’s okay to be a grouch on occasion. Do whatever it takes, and – most especially – what works for YOU and your family, damn the critics. Blessed be.
Thank you. Much appreciated,.
Start right now looking for respite care options — day care for him, somebody from hospice or home health who can come in and spell you for a couple of hours, anything like that which will allow you to get out of the house and away from it all for a while — take a walk, go to a film or concert, meet a friend for lunch, Caregiver burnout is a real thing. There’s a reason lifeguards grab you from behind. It is not selfish or self indulgent to take care of yourself. It’s a matter of keeping yourself healthy and sane so you can better care for him. .
There will come a time when you simply cannot care for him by yourself, or care for him in your home. Now is the time to face that fact and begin thinking about where and when he will go when he can’t stay at home any more.
This is a hard, scary time for you personally and for your family. Watching the person you love literally disintegrate before your eyes is excruciating and soul shaking. It can cloud your judgement, and make coping very difficult. The thing that will get you through this is to face the realities of the situation, make those hard, hard choices and do what needs to be done for his sake and yours, despite the difficulty of doing so. Be prepared for getting criticized for being cold and heartless, but there will come a time when the only viable option for both you and him is to put him in care. You will try to keep him at home longer than you should, but the time is coming when the professionals have to take over.
I’m sorry to hear that your son is not coping with this well. I hope he can find some help. As for your friends and relatives — try not to listen to what they say, but to what they mean. The fact that this relative calls at all means they’re thinking about you. They may have trouble putting their feelings into words, or even knowing what would be appropriate to say. Despite that, they are reaching out to you.
You make some excellent points. I know there is a rough road ahead. I spent a very scary afternoon at the library… 😦 But I would rather not kid myself about what is going on.
I do see your point about the relatives.
Thank you.
I have no great word of wisdom, just a link that might give you some tips and support: https://www.alz.org/, particularly the links at Caregiver’s Center. This site is the Alzheimer’s Association in the US,, so many of their resources will not be available to you, but there is lots of other good information there. I went to a 3-hour presentation by a local representative last week on communicating with a person with dementia at the different stages of the affliction. I have done a tiny bit of caring for a person with dementia and may have to do more in the future. One thing the site has are message boards; perhaps you may find help or advice and support there. I second the good advice from WOL: you are in a heart-wrenching and potentially soul-destroying situation, and it is vital that you find ways to keep yourself healthy and sane. It may seem trivial to some people (like your so-called counselor), but we crafters know how helpful knitting and tatting are to our peace of mind. I have a t-shirt and a set of stitch markers that say, “I knit so I don’t kill people.” That is an extreme version of a truth we know. My thoughts are with you.
Thank you so much. Love the t-shirt and stitch markers!
Thanks for the link. Being able to talk to others in similar situations makes a big difference.
That is a great link! I was searching for Parkinson”s, but dementia is dementia.
Knitting and tatting is good therapy. Exercise is not for everyone as a release. No two cases are the same. Day by Day-minute by minute is the only way to cope.
Sounds like a plan. 😉
Keep tatting, keep blogging, keep breathing.
And feel free to rant and rave
I do!!
Thanks! 😉
You can rant and wail at me anytime, if I can return the compliment!!
There are days when my head might explode!!
If you ever want to take this conversation offblog-
bladen.jillian @orange.fr