Having read some posts, I am so sorry for those who have lost loved ones to this cruel illness. My husband was finally diagnosed with PSP in November, having been diagnosed with Parkinsons in 2013. The illness is developing slowly, but I now have periods where I struggle with the lack of communication and apathy. I miss him and I know that this is not going to get better, and I need to be strong for him. Any tips would be greatly appreciated. I think unless you have experience, it is difficult to understand how isolated you can feel. Many thanks
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Toddet
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Welcome to the site. Try using alternative ways to communicate, thumbs up for yes and down for no, a picture board where he can point to what he wants or needs, an alphabet board where he can either spell words or point to letters for you to spell it. Find a method that works and use it till it doesn't, then try something else.
You will constantly evolve your caring methods to make his needs.
I was lucky in that my sweetheart responded well to affectionate gestures. He was a very good hugger, and that helped us both.
I did very much enjoy going with him to speech therapy, which gave him some brief improvement every time. If it's not too late, and if you can access anything like the LSVT Loud program, I recommend that, as well as the LSVT Big program of physical exercise. It helped us both to have positive things we could do together and did slow down the deterioration.
Videos about these therapy programs are available online. They are designed for Parkinson's patients and even here in Maine it was not hard to find qualified ( and insurance covered) therapists.
And stay in touch here. The isolation is a bear, and it's hard, as you know, to avoid when you are focused so intently on the care of your loved one. Knowing someone on this forum was awake somewhere, whenever I needed to vent, was a sanity saver for me.
I know exactly how you feel because my Mary is locked in and cannot communicate. But I know the things she likes and try to keep to a routine. I take her out at least once a day. I am lucky that I now have a lot of care coming in (the carers have become part of the family) and friends who visit and chat. I can see in her eyes that she appreciates the support but it is oh so lonely. Take time for yourself. If you burn out you are no help to your loved one.
I am sorry to welcome you to this site, but I believe you have come to a good place to find support and comfort.
I also found this forum when I was feeling isolated and alone. My wife was struggling with communication, requiring more and more care, and loosing more and more cognitive and physical abilities. Our friends would help as they could, but I kept feeling like I was the only one going through this struggle. They showed concern, but really didnt understand.
Although my friends on this forum are virtual (although the ones in the UK get together for a pint occasionally), I know they understand, encourage, and provide useful information.
I hope you find this a safe place of comfort during those times of isolation, fatigue, and frustration.
Thank you all for your lovely, supportive replies. It means a lot to have contact with those that truly understand. It is a bitter-sweet feeling as I am sad for everyone who experiences these illnesses.
Toddet how right you are! It is very lonely and isolating being a carer. I hope you find some help and strength on this site. People are very kind and we will all help you when you are down or have a query.
I hope you have some friends or family who are supportive? I know mine all vanished when my husband became ill. There was only one person who was helpful and still is. I couldn't believe it to be honest but it seems it's quite common for people to do that. I think it is very cruel. At least you will always have someone here.
I hope you are sometimes able to get a break as it is so tiring.
It must be so shocking because your husband was misdiagnosed. Sadly that is not unusual.
Try and get some respite. If you contact your local hospice your husband might be able to go once a week to the day centre. Everyone who has used it seems to appreciate it. It means you get a break to escape into town or do what you want.
Sadly your husband's loss of communication will get worse. I am sure you know that of course. I am afraid it will be up to you to try to get through to him. He is still in his body and understands what you are saying but just can't be the person he once was. Hold his hand and tell him you love him every chance you get. It will comfort him and you too when he is no longer with you.
Take care of yourself and there is always someone here to talk to.
Hi, I have learned not to speak at all until my husband has been awake and alert for the first 15 to 30 minutes. If I try to communicate when he first wakes up all he hears is hieroglyphics. I get really tired of repeating myself so I just don’t say anything. Yes, it’s extremely lonely. It helps to play soft music in the background and I spend a lot of time on social media. If I try to talk about a news event my husband just gets upset and dwells on things that we have no control over. Then, finally when he’s ready to talk it’s always about his next doctor appointment or whatever ailments he’s feeling at the moment. It’s tiring. As others have mentioned the majority of our friends have stopped coming around. I think they are simply uncomfortable not knowing what to say or how to respond. I try to keep busy by journaling or reading up on his illness. Try to find a hobby to occupy your mind during silent treatments. Sometimes I can’t wait for 5:00 cocktail hour. I know it isn’t healthy but it’s satisfying, in moderation of course. I’m too numb to cry but I will laugh like a crazy person for no reason at all. There’s no right way or wrong way to experience “anticipatory grief”. Loneliness is part of this cruel and dreadful disease for both the caregiver and the person who is slowly disappearing in front of our eyes. Do you have family to talk to who understand and support you? I text with family a lot, I’m always cracking jokes. It’s just better than crying.
Keep soldering on. I’m sure you’re making the best of a horrific situation. We’ve all been there. You have company on this site. Please keep coming back.
So sorry to hear your situation SewBears. Many thanks for your response. It is strange how friends find it hard to cope. Most of my husbands male friends disappeared very quickly. Take care and keep sewing.
Thanks! I’ll be starting another sewing project when I finish the paint by number kit 😆 I think I may have responded to you in my fogged sleep state last night. Everything I said was true but after reading it this morning it isn’t very encouraging. Basically I was trying to get across that you aren’t alone as we are all here with you. It does get lonely though and I’m sorry that you are struggling too. My only advice that I can think of at the moment is to keep yourself entertained. Someone mentioned a really good book that I enjoyed called Last Dance At The Savory by Kathryn Scott. It was an eye opener. I didn’t think it was a tear jerker which is something that I was worried about. It’s a very well told story if you’re into reading.
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