Last night Larry asked me a question. After several attempts at understanding what he was saying I got it. He was asking me if we should invite Jessica, the massage therapist we’ve been seeing once a week for the last couple of years, to dinner.
Trying to find a massage therapist who did home visit I mentioned my search to a friend on mine. Jessica, her friend’s daughter, did them. I felt comfortable having her come into the house knowing she was a known quantity. She has turned out to be very good at what she does. We both like her a lot. She’s been working on Larry’s neck and shoulders and my feet.
That’s where the dinner party invitation was coming from. Needless to say I was a bit stunned. A dinner party? What the hell is he thinking? Told Larry my entertaining days are well over. A dinner party. Like I have nothing else to do.
Depending on what time of day Jessica arrives for his massage, hopefully around lunch, try a luncheon instead. Larry would get his wish, sort of, and it would be a lot less work for you. Make it something easy for the 3 of you like sandwiches and salad/soup....you could even run out to get the sandwiches while she is there doing the massage.
Even that idea is too much for me at this point. I am having a hard time walking the mail across the street to the mail box. Everything is an ordeal now.
What about a takeaway. My husband liked seeing people and before PSP we used to do a lot of entertaining, nothing fancy, just eating with friends. When he reached a certain stage of his illness I felt I was losing touch with people so I decided to invite four friends round and asked them to bring in a takeaway. At first C would sit at the table with us but later on he would stay in his chair. He enjoyed the chatter and would sometimes do his funny humming laugh. We always split the bill by however many people we’re there, 6 or 8 and someone always brought wine. Often I had to leave them to chat amongst themselves if I had to do something for C and they always helped clear away and fill the dishwasher.
It was an effort but well worth it and since Colin died, we have continued to have regular takeaways, taking turns to host.
We also had a night carer and Friday was food and film night. I’d cook and she would bring a DVD. Again C loved to hear chatter and a lot of laughter.
I hope your entertaining days aren’t over. Food, wine and laughter with friends helped get us through the nightmare that was PSP.
Oh Jeff, you sound so overwhelmed. When my husband asks for expensive electric gadgets that we can’t afford and mundane things that I know he would not be able to work, I simply say “okay, I’ll see if this is within our budget and maybe we can get it next month”. That seems to satisfy him until he sees another commercial. It’s kind of cool that Larry would like to have a dinner party. Maybe he was just feeling lonely or melancholy. Jessica sounds like a lovely gal. Would she be able to just visit with him for a little while? 🤷♀️
Right Jessica is coming weekly. She is a single mom with two girls 9 and 6. She fits the massage in around her day job working at a preschool. I’m very fixable when she can’t make the appointed day or time up to a point. We usually find something that works for both of us. To drop in for a visit would be hard for her. Me too. I set a schedule daily that gets thrown out the window frequently. My adjustment levels have declined.
It might be nice for her to know how Larry feels - and your understanding of the reality !
He just feels appreciative and is in a different place. I remember feeling that Chris didn't really understand the cost to me. Now I think he couldn't bear to think it because he couldn't make it okay.
You sound exhausted and I can really understand why but I do think that it is rather lovely that Larry wants to invite someone who is special to you both, and who obviously completely understands the situation. I agree with Nanna B about a take away. Do you have any that deliver locally? From what you are saying about Jessica I doubt she would mind helping you sort out plates and cutlery and maybe she could come with the friend who introduced her to you both. It would do you good to have some 'normal' conversation. It is very easy to forget how to socialise when one is so tied up in such a strange environment which few could deal with, or understand. Take care. Love AliBee xx
Unfortunately takeaway is a thing of the past. He can’t eat what we would order. Now I have to make all the meals. Then cut up his food small enough to eat. He love pizza but that is out of the question now. I suppose I could purée it but seriously who would what that?
You and Jessica could still eat it. Nigel enjoyed mashed or pureed sweet and sour or mild curry and he had cauliflower rice which went down ok . I agree not at all sure about the pizza though xx
Sorry to gang up on you Jeff, but you MUST get some rest. We all know that feeling of total exhaustion, only a few days completely away from PSP will take the edge off that. Sort it quickly, before it sorts you! Then where would Larry be.
I also agree with Jean about this dinner party. I suspect Larry is trying to express his gratitude to Jessica for her help and the only way he can express it is suggesting this dinner party. His brain can't compute his thoughts any other way. Personally, I would go with the flow and say you are going to arrange it some time and hope another fixation comes into his mind before you have to do anything.
Hospice does offer a five day break. I have to find out more about the place they use. I have to be comfortable with it. I don’t want them to do him harm. He can’t express himself verbally readily at this point. My fear is they would medicate him to keep him quiet.
I was cautious with leaving Chris. If I'd known he only had a couple of months left I would have struggled on. They lowered his bed to the floor when they couldn't be around. That distressed me a lot. He seemed fine with it.
But they were great. Staff sat and talked to him about music. The chef cooked special treats. He felt loved and central. I arranged plenty of visitors.
He was very ready to come home again though. I think it was important that he understood and trusted that I needed the break but wanted him at home.
You can specify that they check with you before changing any medication.
Hope it works out for you Jeff. It will refresh you.
Gosh, now that it has been over two years since my son died I barely remember the FATIGUE, but you brought it all back to me. It was overwhelming and relentless. I am so sorry for what you are feeling.
I think that is cool that Larry's brain is functioning such that he remembers the joy of invites for dinner. I think Jessica would feel flattered that Larry is mentioning inviting her for dinner. Here is what I propose...........I have an aversion to lies........tell Jessica that Larry has suggested an invite. You know she is busy and you are grateful for all she has done for the two of you. YOU, YOURSELF, cannot handle anything out of the routine you have with Larry, and even the thought of any thing outside the routine feels impossible. That said, could you offer the invitation to her and ask that she please decline (for both your sakes) so that you could tell Larry (or she can tell Larry) that it is a lovely suggestion, but NOT possible.
the comment of relentless and overwhelming strikes a chord with me I know we are all trying to do our best for our loved ones but I am now adhering to one of my daughters who says If you go down mum dad will be lost 'So I think that you need to get your own strength up and just take each day at a time i know if someone asked me to host a party I would jump in the nearest lake!
We had two old friends to lunch yesterday It did work out but my stomach was knotted a whole week beforehand
Two woman who works with Larry had been bring lunch for the last two years every few months. I had to stop that. What they brought got hard for him to eat. I told them in the future they are welcome to visit but the food part is over.
Jeff, you are obviously feeling too overwhelmed to take on any entertaining and I do get that. So, in order that both you and Larry can show your appreciation to Jessica why not give her flowers and chocolates with a few well chosen words in a nice card. I am sure she would appreciate your thoughtfulness and a pretty good compromise for Larry who obviously wants to do something for this lady. All the best, Hils.x
Every August I seed an area of my vegetable garden with arugula/rocket. Since Larry can’t eat salads any longer I started to give Jessica the arugula/rocket. She is most appreciative. It is very expensive to buy in a store. It tastes much better than what can be bought in a store and last longer in the refrigerator. This year’s first cutting should be in a week. It will survive until a killing frost that could be December sometime.
Lol - I take it then, Jeff, that it's going to be rocket over flowers and chocs. That's great giving her produce from your garden and I am sure most appreciated by her, but my point is that buying flowers and chocs for Larry to give to her would give him such pleasure, especially as you don't have the energy to entertain. I rest my case and will put my 'bossy hat' back in its box. Love Hils. x
Jeff, your fatigue is real and inevitable; can relate this week as I spent the last ten days in "Hurricane Mode," securing the property, tying things down, evacuating to a disability and dog-friendly hotel 5 hours away by van, getting Robert in and out of roadside rest area bathrooms, cleaning up the wind damage, working with a chain saw on fallen trees...yes, sometimes all you can do is put one foot in front of the other and keep moving. But I do want to share with you how nice I think it is that Larry is engaged enough to want to have a "dinner party" in his home and recreate old times with friends and someone he holds dear. Just thinking about this must have given him pleasure. Lots of good suggestions for coping with this request have already been made, but I will offer one more. Because my husband's severe neck spasm and distortion make it hard to have a meal with friends, I try to invite someone over about once every two weeks for a glass of wine/iced tea and some finger foods and that is something that we have come to enjoy. He can stay in his recliner, which supports his neck which can't stay upright, and he can enjoy their smiles and presence. People stay about an hour and then move on. Just a thought....
Hi Marilyn, I just read your post and off topic, -wondering where you live. We just went through hurricane Dorian here in NC. My husband has PSP, but we were able to stay home and ride it out thanks to some lessons learned from hurricane Florence last year.
Your suggestion of short casual socializing sounds nice.
Hi, ncgardener--We live about 15 miles south of Charleston, South Carolina, in a rural area on the edge of the ACE Basin. It's a golf/horses development that is pretty, but a bit inconvenient when it comes to getting home health aides out here. For the first time in a hurricane, we decided not to ride it out but to evacuate to Asheville, North Carolina and the mountain air was lovely for a few days. Having said that, I don't know that we would evacuate again. It takes a lot of energy to pack up and evacuate and the travel is twice as slow as it would normally be. I know of a nice condominium-hotel in Asheville that has good access for handicapped, with some of the units accepting pets, for an extra fee. It is pretty comfortable once you are there because with a kitchen, living room, enormous bath (can maneuver well in it) and a balcony for sitting outside to just enjoy the view, it is attractive for my husband since we don't have to go out for meals but can just "stay put."
Hi Marilyn, Thanks for responding. We live in Wilmington and my husband is still ambulatory so we stayed. I'd be interested in learning the name of the hotel in Asheville, that may be an option for us in the future if the need arises. Last year in Florence I almost called EMS to put him in the Hospital. No power for 8 days in the oppressive heat and humidity was more than he could deal with.
Oh Jeff, please get some rest. I'm not talking about a good night's sleep. You need a real break!
When everyone is telling you that you need a break, it comes from our own personal experience. Look into respite seriously. It almost sounds like that may be too overwhelming at the moment. I get it, but you need to find the strength to do this sooner rather than later. NO ONE can do this job without help no matter how superhuman we think we are. Reach out to hospice if you haven't already. Can you get Larry's Dr to help you with this? Their support will be a huge help for you and they can help you arrange for respite. I remember thinking no one could take care of my husband like I could. Then I got hurt. . . . . .
If you get some rest, you will be able to see that what Larry is asking isn't out of the question. You've gotten some good suggestions here. If you had a little help, I think you could do this. Especially if you use take out. When my husband got to the point where he couldn't express himself anymore, he still enjoyed everyone else's conversations going on around him. I don't believe his hearing was ever affected by PSP so he got pleasure just by listening to us talking around him. I had a hard time getting my daughter to see that. She wanted to space our visits so he wouldn't be alone, but he enjoyed it more when we were there talking to each other. Looking back, I think it took the pressure off of him to talk to us when it got to be so hard for him to get even a word or two out. I can't even imagine how hard it must be to have the words stuck in my head with no way to get them out.
Even if Larry can't eat the food he would get to enjoy the company. Even when my husband couldn't eat much of anything, he was able to hold KFC chicken tenders and I could feed him the mashed potatoes and gravy. That's just one more possibility.
I know I'm piling on too, but I'm really concerned about your health and felt I had to add my two cents.
Last night I did get a decent night’s sleep. Ran errands this morning with Diane, Larry’s cousin. We had our weekly bitch session. I vented as did she. Tomorrow is will try to get to my workout which helps blow out tension.
I'm glad you got a little rest. It does make a difference. However, the fact remains that it really sounds as if you could use more help. The time to arrange for that is after a good night's sleep because the sleep is only a bandaid for the larger problem. It's temporary at best. Like Hils, I've had my say. I've given you some advice from my experience and I hope you will give it some thought. All the best to you and Larry as you work through this.
Larry must think you are extremely capable to suggest a dinner party on top of everything else. Sometimes I tell Sandy that I am flattered he thinks I am super human, but I'm not. It's sweet that he wants to do something like this. Even telling the therapist of his suggestion will probably make her smile.
The best to you. Hope you get to your workout tomorrow. My next step in self care is to get back to the gym.
Yes. Probably one of the best things we can do for ourselves. I used to exercise diligently until life derailed me. I'm determined to get back at it - it'll be good for both my husband and me.
One of my friends whose husband has multiple system atrophy invites another couple to his room for drinks and nibblies every now and then. He can't talk much, but he follows the conversation and he enjoys it, while my friend has some conversation with their friends.
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