I can see the ways you are taking care of yourself and your husband and son and EVERYTHING else. Therapy would be another bright spot in your week, or month. Hugs and high fives for all you are managing.
Finding a therapist doesn’t have to be perfect. It just has to be a forum for you to talk about your situation.
I understand the benefits of therapy; I saw my former therapist for many years. I have two problems now that have stopped me. I don’t have the energy to make the effort. Or maybe it is just one big problem. H can’t be left alone and it is too much effort to make arrangements for him. Aaaaaack! I hear his walker! Why is he moving without me?
Sorry, I am hearing things. He is sound asleep. The noise I heard was my neighbors starting his lawn mower. I am going crazy. They don’t sound anything alike.
I have not read the entire thread, but I just want to say this: Tai Chi!!! Your local university or community college may have classes, I found my weekly class on Meet Up. When I started scanning the Meet Up site, there are lots of interesting things to do, for like minded people. If your son comes home for a period of time, you should snatch 2-3 hours a day for yourself, to do things you enjoy and which take you outside of your four walls, even if it’s just sitting in the garden, uninterrupted, with a book for an hour or so. I do think you should ask your son for a couple of hours each day, to yourself
Another great discovery of mine this week - Apple Air Pods! My H gave me a set, to much protestation from me, and I’ve discovered that I love them! (don’t tell myH!) I listen to meditation (through UCLA podcasts) before I go to sleep; I also enjoy the overwhelming number of podcasts available during the day when I am exercising to taking a walk; right now, I am wading my way through Drop Out (Theranos).
You sound as if you are doing ‘all the right things’ but you also carry great weight; if you carve out a period of time each day, solely for yourself, some of that weight, which manifests in shoulder pain etc., with gradually start to life, and you will feel more able to continue your journey
@lotsofquests, someone caring for a parent in her home posted to the parentscaringfortheparents thread that she got a camera setup that she can watch from her phone. Maybe that would help.
http://talk.collegeconfidential.com/discussion/comment/22247714/#Comment_22247714
My sympathy and empathy with what must be a very tough situation.
You are doing an amazing job. Reading about getting your H up off the floor was concerning.
I wonder if a support group for caretakers could be beneficial. I am sorry but I do not remember
what size community you live in. Also, aware that is you leaving your H which is difficult. Still,
gaining ideas of how to handle life from others in the same situation might be good.
It isn’t the little stuff so much that you have used your “bandwidth “ of coping to the point that you got nothing left. But life doesn’t work that way, and continues to pour the usual indignities and blows even when you are struggling.
I’m so very sorry. Yes, I’ve been there. Where I am barely able to keep it together, but am doing so. And then, comes dime other hit. Thankfully, yes Thankfully, it’s usually some dumb minor thing that just knocks me right down and I can’t do it. The reserves are just not there.
May you get through these difficult days and recharge.
I was coming on this morning just to update a bit and saw post 105 about the camera. I don’t know why I hadn’t noticed that before but that sounds like a great idea. I am going to have S research and order it today.
On to the update: in the 6 weeks or so since I have written, H has been hospitalized twice. He got pneumonia from a virus introduced by his shower aide. She went to Aruba to recover; he went to the hospital for a week. Her supervisor told her it was ok to come here even though she was sick. We really like her and didn’t want to cause trouble for her but definitely will not let her in the house again if she is sick. The second hospitalization was for another stroke. It was relatively minor affecting only his speech but extremely worrisome given the amount of blood thinners he is on.
S came home after the pneumonia for a planned visit that included his college reunion. He extended a week after the stroke. The lawyers determined that they could go forward with his tv show but they haven’t sold it yet. I think he has decided to give it until the end of summer and then will likely sell, donate, toss, and pack his belongings and head back east. He has until November for a spring admission to Pitt or February for the fall. That, of course, is being overly optimistic that he will be accepted.
I had my long overdue yearly checkup on Thursday. We only talked about H half the appointment (he had just been discharged about 3 hours earlier). Looks like I am in pretty good shape. I am overweight but I work with a trainer 2 hour per week and walk 2 miles every morning. I said that I would have to give up my walks when S leaves but dr. said I should try to continue. He said I should get a medical alert system which I will look into but the camera mentioned above might be more reassuring for me. I got my bloodwork results yesterday and was surprised to see that my a1C was the same as 2 years ago. I was sure that it had gone up. The only number that was off was my iron saturation which was 17% when it should be above 25. I have had low iron much of my life but I thought after menopause that it would be more normal. Could be why I feel so tired. Lol.
I have been working with H’s caretaker to try to develop better systems to simplify my life. She can’t come as much as I like due to her family responsibilities but when she is here, she is 10 times better than a therapist. She will be away for 2 1/2 weeks in July but should be around for all of August. We have been organizing my kitchen and loading stuff for trips to Goodwill. I feel so much better when I can eliminate clutter. Unfortunately we can only work when H is asleep or in the hospital.
Things are not great but I am coping. We have some wonderful friends that I can lean on.
@lotsofquests, it sounds as if you are making lemonade out of your situation. It doesn’t sound like it will ever be wonderful, but you are figuring out ways to cope. Many many hugs to you.
@lotsofquests, thinking of you on the first anniversary of your sister’s death.
It was me who posted about the camera, I am finding it to be an incredible tool for freedom, feel free to PM me. Also, my MIL had a stroke many years ago and my mother has lived with me for nearly 10 years and needed help for the last few years. You MUST, as a caregiver, carve time for yourself, yes, the person will make bad choices, will fall or do whatever other silly thing they do, but even if you were there, a person can fall in a room full of people and, generally, you should not risk damaging your body to catch them in a fall. It’s not the fall that’s dangerous, it’s the landing.
When someone’s mind is impaired they are going to do stuff that would be stupid, if they still had the mental capacity to understand that. We finally made peace with the in laws insisting they would age in place in their ever so impractical home, and we decided, "ok, that is your choice and you prefer that choice to being ‘safe,’ so we stopped trying to convince them to move until the very end. In that same vein we understand that my mother is going to hurt herself sometimes, but she is still happier here than in a care home and, thus far, the injuries have caused me way more hassle then they cause her pain. She simply cannot remember she has no balance.
It’s time for another update: S is leaving Friday and I am feeling sad so I am going to release some of my depressing thoughts on the kind readers on CC. Since I wrote last in June, H had one more hospitalization for pneumonia which was another setback on his recovery. His dr, thought he was aspirating so they did a swallow test which didn’t show any problems. I suspect that he can swallow fine when he is rested but when he is tired, his speech slurs slightly so he might be swallowing incorrectly. That problem seems to have gone away as he gets stronger.
Most of his in-home services have ended due to his hitting a plateau. When PT ended, we hired a woman who was a part-time occupational therapist at his former in-patient rehab facility. She has been wonderful: very positive and upbeat while pushing him to do more and more. She is on the faculty of a nearby university and wanted to do some personal therapy because she likes one on one care, not for the money. The only downside is that she is expecting a baby in February so we don’t know how much she will want to work after the little one comes. If she does plan to come back, I think that we can fill in with my personal trainer who has extensive experience with geriatric clients. I don’t know if we will attempt out-patient rehab again if that doesn’t work. For right now, we are putting off any decisions.
S is still in Hollywood chasing his dream. He did meet with graduate admissions at Pitt and could still apply for next fall by February, I think. He has two projects that he is working on that have possibilities of being produced. Both have important meetings coming up in the next few weeks so his status could change quickly or it could continue to drag on. I just found out at Thanksgiving that H had a serious talk with him last summer and encouraged him to not quit. His dad’s support has made a major difference.
My current favorite thread on CC is the 20 things for 2020. I am pretty restricted due to my husband’s lack of mobility but I still have control over many aspects of my life. Losing my sister, having my H change so drastically from an equal partner to a mostly dependent, and having S on the other side of the country (which is probably good for both of us; he needs his own life), has left me with a huge void in my relationships. For 2020, I want to plan to make me a better person. For now, I feel satisfaction in my accomplishments, which lately have centered on cleaning and organizing clutter. I turned 70 last summer so I feel somewhat of a sense of urgency to get things done. Losing the extra weight will give me more energy, help me sleep better, and will probably even help me cope better with H. (the diabetic lady gets really grouchy when she doesn’t eat properly!)
This holiday has been frustrating. S is home but we really haven’t spent much time together like we did during his visits last summer. I have to be careful not to try to make him the companion that I need. I miss our mornings spent watching his latest interests on Netflix and discussing current events. He has had a cold for the last week and has spent most of his time in his room, running (training for his first marathon), or out with friends. He has done everything that I have asked him to do but I don’t think that I can ask him to just sit and talk to me. That just never works. I am sure from his point of view he has spent lots of time with me, especially since he was here for Thanksgiving. Maybe that’s why I am feeling so sad; he probably won’t be home again until next summer after being here 4 times in the past 5 months.
Time to start my 20 for 2020 list which I think will be a combination of personal goals because I need to feel like I am moving forward and treats for me because I deserve it!
I was just checking to see if this thread had been locked due to lack of activity. Since it is still open I am going to add to it.
H and I are down to a routine. I get up between 6:30 and 8:30, depending on how poorly I slept the night. I love my mornings before he gets up. So far, I have eliminated 108 bags of trash; my New Year’s resolution was 10 per month so I am way ahead. I work on my family tree for at least 30 minutes every day. After paying for a membership for 10 years, I am actually watching tutorials to try to do it the right way. I am midway through my second year of Storyworth which has been great for self-analysis.
H stays in bed watching tv or listening to podcasts until 2 and then takes an hour to get ready to come downstairs. I feel a little guilty letting him stay in bed so long but with absolutely no help or breaks now due to quarantine, it is the only way that I can stay halfway sane. Once he is downstairs, he keeps me busy.
I have driven my car twice since February: a drive by to the cemetery for H’s close friend’s funeral and once to the Walgreens at the next block for a prescription that was a problem. Jim’s former caregiver is now our shopper.
A few of my neighbors have been true neighbors, bringing meals to break the monotony of my own cooking. I keep saying I am going to use our stimulus gift card for food delivery but it just seems to take too much energy. H doesn’t complain about meals but I have come to hate mealtimes.
I just “celebrated “ my 71st birthday so I am still fighting my birthday depression. I never worried about getting older but this year it is hard to have positive thoughts. My son’s career is on hold due to the effects of the virus on tv and film. He left LA two weeks ago but has been here only once, a very nice visit in our driveway. Even after he finishes the 14 day quarantine he is not likely to be here because of H’s extremely fragile health.
My family has pretty much abandoned me. I did get a few “happy birthdays” on FB. I am trying not to keep score which is so destructive but I have trying to analyze why no one even called me. I have not always been the best at birthday cards but I was at every dance recital, football game, birthday party, graduation, when they were all growing up. Now that I got that out, I can forget it and move on.
It is essential for my mental health to focus on all of the good around me. When I mentioned to H’s nurse that I have not had a full day off in the 3 years since H’s heart surgery, the nurse volunteered to come stay with H for a day since he is obviously cleared of the virus at this point. I would never do it, mainly because I have nowhere to go, but the thought was really appreciated. And, just so you don’t think I am always complaining, 3 different friends brought me birthday cakes.
Me time is just about over.
I don’t know if it helps to know you are not alone in your alone battle. It sounds incredibly hard. I have a good friend whose husband has MS. In the last year, he has gone from hardly walking to not able to stand. They gave up their caretakers. She started work from home. She finally bought some sort of lift device so that she could get her husband back in bed or off the floor without dragging him. She is working full-time, care-taking full time. She is a breast cancer survivor and last week her implant broke. The last straw for her was that the surgeon who did the surgery is no longer in her insurance network and she was getting a run around on costs. She had to start over with another surgeon, which meant that her surgery was pushed back two weeks. I had volunteered to drive her because we have a big car so if she sat in the back (3rd row) we would be close to 6 ft apart. Our house has been super careful and tested negative so it would have worked… but the day of her surgery, we are scheduled to go to LA to a hospital for my DH. It was really hard for her. “Just getting a ride after surgery shouldn’t be a big deal”… oh, but it was so so MUCH more than just that.
Not getting family wishes on your birthday is not a big deal … but it is so so MUCH more than just that.
You are not alone and you have my admiration for coping very well!
Hugs, @lotsofquests. Have you talked to your PCP? It sounds as if you might be a little depressed. Have you thought about trying medication? There is definitely such a thing as “situational depression” and there’s no shame in getting help. I got an Rx for anti-anxiety meds a couple of years ago when my son was struggling and I was at my wits’ end. I never thought I would need / ask for meds, but I’m glad I did.
I think having someone come look after your husband periodically would be helpful. Could you go for a long drive, at least? You need to get out of the house.
@lotsofquests i did not see your update at the end of the year so I’m glad you bumped it up.
You need to find an outlet. An online support group at the very least. I know that there are tons of listings on Facebook.
Just having a day off, a drive and a sit in the park with takeout would be a break. That you deserve. Your son can come and help you. Don’t feel bad asking for what you need.
@lotsofquests sending support and permission to air out your feelings here whenever you wish - you’re allowed to do that more than a couple times a year!
Many people are having a tough time during COVID, but @lotsofquests, you are having a particularly rough road. I agree that you need to be able to get out of the house from time to time. Of course you don’t want to risk becoming infected, but can you go out for a walk? Sit in the park? Shop during senior hours at your grocery store? A literal change of scene can be helpful.
I also am 71 years old and one of my major fears is being socially isolated as I grow older. Especially during this weird time, you might want to reach out to people – neighbors, friends, relatives – and arrange a “date” via Zoom. At the least, having something on your calendar that involves someone else will be helpful to your spirits.
ETA: Especially because you said you’ve come to hate mealtimes, think about getting takeout from time to time – maybe once a week. Again, having that special night to look forward to can make the mundane more tolerable.
Thanks for the responses. I briefly tried medication but decided after 6 weeks that I felt worse instead of better. I probably should have tried something else; I will think about it.
Before this terrible heat spell, I was able to walk in our neighborhood a little. The friends who used to stay with H will no longer come to our house. Nearly everyone we know is taking the virus very seriously and since they know about H’s fragile health, no one wants to risk being the person who might infect him. I can leave him for an hour at a time as long as I am close by and can get home quickly when he calls. We have had a few get-together on our road—-quite literally on the road. Everyone brings a chair and their own drink . I have a little problem with hearing because of the masks and the 6 feet limit but I can usually follow fairly well.
I was all set to order delivery from a restaurant that has great shrimp or ahi tuna tacos but son said half the staff had just come back from the virus and it might be a good idea to wait. I find one of my symptoms of depression is having difficulty making decisions. I couldn’t think of another restaurant that I wanted to order from and it ended up being easier to cook.
S came by for a few hours this afternoon. We mostly sat on the back porch. H had been downstairs for his weekly iv but went back up to his air conditioned room. I have really missed our informal spontaneous talks so I will admit that I was glad that H made himself absent.
Esobay, it does help somewhat to hear of others. Hearing of your friend reminds me that I am really not so bad off despite my earlier words. I am feeling down right now but I know that in a few days something will happen that flips the switch and I will start seeing the glass half full instead of half empty. To go back to my original post, it can be the smallest thing to turn the tide and sometimes it is something major. Before we started our shutdown here, H jokingly told one of his friends that he married me 30some years ago so that he would have a nurse to take care of him when he got old. Unfortunately there was more truth than humor to the statement. (I did tell him a few weeks ago how hurtful that statement was. He didn’t remember saying it but he also didn’t deny it. And he apologized.)