I did it: I finally bit the bullet and... - PSP Association

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I did it

SewBears
SewBears
53 Replies

I finally bit the bullet and courageously asked a close family member to help out for one week, not until next April, so that I could plan a get away for myself. Family member said sorry but no. That sucks! It took courage to ask and I gave this person plenty of advanced notice but I was turned down. Dysfunctional family with a capital D! I’m not sure who else to ask. Feeling very isolated and sad but I know that this will pass. Just needed to vent. Sigh!

53 Replies
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Westerngirl

It is so hard to ask for help so to get knocked back must be awful.A break would do us all good but seems a distant dream!

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SewBears

Westerngirl, where are you located?

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Westerngirl

On the island of Islay on the west coast of Scotland

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SewBears

Sounds lovely! I was just wondering if we were close. Nope! I don’t think we could be farther away. I’m in SouthWest Nevada USA. But with this site it’s like we’re neighbors. Hugs to you!

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Katiebow

I think that some people feel daunted at the thought of nursing somebody with a serious illness and maybe feels too overwhelmed. I guess in the US you have to pay for professional help, here in the UK help is provided for respite but you have to be receiving CHC funding which unfortunately isn't always easy to get, it's a bit of a lottery as to who does or doesn't qualify. I really hope you manage to get support so that you can take a much needed break.

Love Kate xx

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racinlady
racinlady
in reply to Katiebow

Actually Medicare pays for respite in the US. You have to be in a hospice program and be covered by Medicare. Hospice can arrange the respite care for you. That is one of the things your hospice social worker can and will do for you.

Too many people in the US aren't taking advantage of hospice services because they think you have to be going to die in 6 months. This is not true of several of the neurodegenerative diseases. My husband was in a hospice program for almost 3 yrs before he passed. They were wonderful support and, when the time came, allowed my husband to be cared for in assisted living rather than a more expensive nursing home. It's too bad this misconception is still out there because it stops people from even asking about the possibility of getting their help.

Pat

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SewBears
SewBears
in reply to racinlady

I’m looking forward to taking a 3 hour caregiver class that starts on the 27th of this month. It’ll be taking place every Friday for 6 weeks and it is hosted by a Social Worker through Cleveland Clinic. What’s nice about this class is that it is located close to my house. I hope to find out what Social Services can offer.

Thank you for the Hospice Medicare option. I’ve heard about this before but hadn’t looked into it. I keep thinking that we aren’t ready for that yet.

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racinlady
racinlady
in reply to SewBears

Good for you! It sounds like you are being proactive. I think you will be able to work something out. Taking care of yourself is SO IMPORTANT!!!!

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Cade08
Cade08
in reply to racinlady

It might not be a misconception in some cases as our local hospice said they would not take my husband as patient unless they felt he had six months or less to live. Maybe it depends on each hospice? As it turned out, he died less than two weeks later.

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SewBears
SewBears
in reply to Cade08

I’m so sorry for your loss 💔

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Cade08
Cade08
in reply to SewBears

Thank you. I have really enjoyed reading your posts. This forum has helped me so much in dealing with his death.

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racinlady
racinlady
in reply to Cade08

I think each hospice can run their agency however they see fit. If they want to use the '6 months left to live' rule as their policy I think they have the right to do that. That doesn't mean that another hospice can't take care of you. I had one hospice refuse to take my husband because I told them that I wouldn't say that he had less than 6 months to live so I found another hospice. In the case of some neurodegenerative diseases it is not a requirement according to medicare rules.

Pat

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Cade08
Cade08
in reply to racinlady

That’s why I said in some cases. I didn’t know enough at the time to question it and as I live in a small town, they were the only option I had. I only discovered this forum the week my husband died and it’s helped me so much. Just wish I had known about it much much sooner.

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racinlady
racinlady
in reply to Cade08

We lived in a very rural area with virtually no services too, but I was able to find two hospices that served our area. We were barely in each of the areas that they covered (about 40 miles from each). Fortunately one of them agreed to take my husband. I honestly don't know what I would have done if I hadn't found them. I was never able to find more than a few hrs a week of paid help and none of us really knew what we were doing. I'm sorry that you had to go through it with so little help. I only found these sites some time after I was able to get hospice help. They are a godsend.

Pat

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bazooka111

I am so sorry that this happened! I know exactly how that feels — 100% - I am in Ohio, so — I have discovered a service called Visiting Angels —- they do 24 hour service, but whew it is expensive!! I use them now once per week for 4 hours. At first, I felt so guilt, but now I find myself looking forward to the time —- it’s a refresh for sure. Gosh - I am going to pray for your situation, that someone will step up in some way to give you a much needed break. 🙏🏻

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enjoysalud

Good for you Kim. I bet your mom enjoys their visits. I think when we are mostly confined to home, unable to get ourselves out, it's stimulating to have different personalities come to us on a weekly basis. We love our families but it's nice to have "other" exposure.

I just joined a SAGE class (meets once a week) and I look forward to hearing all the different opinions expressed. There are certain personalities that I am drawn to and others that I am grateful I do not know well....but I am sooooooooooooo grateful for the array of personalities.

I'm glad you are doing this for your mom. I wished I had thought of that for my son. He was extrovert. I know he would have enjoyed this, but I was NOT thinking.

Los Angeles, CA, USA

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NannaB

It was probably very daunting for your family member if they don’t see how things are every day. By April things could have changed a lot and you may not feel happy about leaving him with someone who isn’t trained to look after a person living with this condition. I’m in the U.K. and would have been entitled to regular respite where I could have got away without C but chose not to take it. The reason being, which sounds awful, but I don’t think I would have wanted to come back. Early on, I hurt my back and C had to go into a care home as I couldn’t do anything for myself, let alone him. I saw him daily but got so used to the freedom (limited because of my back) that I dreaded the time when 2 weeks later he would be home, sleepless nights again, dressing, toileting, 24 hours on call etc. He had also become even less able whilst away so it was more difficult on his return. Instead, at least twice a year I booked an apartment or house for two weeks with family members. Both places had been adapted for the disabled, including hoists. I went several times with my brother and sister in law and others with one or other of my sons and their families. It was great as they were willing to help if I was there. I could spend as long as I liked in the bath without worrying, I could go for a walk on my own and know C would be OK, but best of all was that they saw how things really were 24 hours a day so had more understanding. On the first 3 holidays I also had my 90+ year old dad, also in a wheelchair but it was fun as there was always someone else there to talk to and laugh with.

Would any of your family members or friends join you if you were able to hire a suitable property? The one who turned you down may be feeling terrible. I have another sister in law who said she couldn’t sit with C as she ‘can’t cope with wee or poo except with babies’, Her husband, my other brother nearly fainted when C fell and had blood pouring from his head. Those two visited regularly but never wanted to be left alone with C.

We are all different aren’t we.

I hope you manage to get away somehow. A change is as good as a rest, well nearly and laughter with friends and family is definitely the best medicine.

Like bazooka, You are in my prayers.

XxxX

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SewBears
SewBears
in reply to NannaB

YES! My daughter would be with us in a heartbeat if I asked her to meet up somewhere. She’s an amazing woman but she is spread thin and I will not ask until absolutely necessary

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SewBears
SewBears
in reply to NannaB

I understand the “not wanting to come back” part. I totally get it! Sometimes I guiltily think “please stay asleep just a little bit longer” but then I feel awful for thinking that. I know... DITCH THE GUILT!

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dollydott

Awww Im so sorry SewBears.

But hey April is a long time away you might be able to come up with something else.

Bet someone on here that lives in your part of the world will come forward with a suggestion.

Family aren't always the best or most capable to look after our loved ones but I guess we have to try to get help from them first.

You were brave to ask 😊

Hoping someone out there can help you.

Love Lynda ♥️

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SewBears
SewBears
in reply to dollydott

Me too! I will look for alternative resources

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Dadshelper

I may have asked this already. Does your husband get any VA benefits?

Ron

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SewBears

Hi all, thanks for your replies. April is a long time away. I wanted to give plenty of notice and time for them to think about it. I received a no answer within seconds and so of course I was disappointed and hurt. Understanding what the family member might be thinking makes more sense to me now so thank you for explaining their side of things.

Hubby is not a vet so VA bene’s are not available. Today hubby can still walk and thank goodness he doesn’t need nappy’s yet. He cannot find words though and it takes him hours to eat a meal. He can’t be left alone in case he faints, or falls, or for those rare times when he can’t locate the refrigerator LOL. His care hasn’t reached the extremely difficult stages compared to other folks on this site but that doesn’t mean that it isn’t hard. The constant guarding and me being his security blanket can feel overwhelming. Now I’m thinking that I wouldn’t want to leave him for a full week.

I love Kim’s idea of a cruise. I wish I had the energy for something like that. I’m exhausted just taking hubby to therapy for an hour. I don’t think I could handle a cruise. Kim is amazing!

Hugs to all!

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enjoysalud

You ASKED that is the important part.....that you got rejected would have happened anyway IF YOU HAD NOT asked.................you rejecting yourself by NOT asking. I find in my life I feel worst about the things I did not ask or do, then what I feel with what I did or asked.

I hope as time passes you will be glad you asked.

LosAngeles, CA, USA

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SewBears
SewBears
in reply to enjoysalud

Beautifully said! Thank you

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Marie_14

How about going to the doctor and telling him/her how desperate you are and how tired? Cry if need be and I bet that wouldn't be hard? You might find they suddenly take note! If you were ill they would have to sort something out?

Good luck to you. Don"t give up! You are not superwoman. Fight for help!

Marie

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SewBears
SewBears
in reply to Marie_14

I will ask about help at our upcoming appointment in just a couple of weeks. Good idea! Thank you

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Marie_14
Marie_14
in reply to SewBears

Sew Bears please don't talk yourself out of it. It is so important that you get regular breaks. So you need someone to step in to allow you to do it.

Then there are the normal breaks each week which you need. Just a few hours but it really helps. If you have a hospice they will help with that. If not how about your local church? Is there anyone who would sit once a week? ASK!! Even if it is not your church.

Remember when you see your doctor to use the tears too. They work...ask Heady! I remember this tip from her so tried it and yes she was right about it working. Thank goodness.

Hugs to you.

Marie x

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SewBears
SewBears
in reply to Marie_14

Hi Marie,

I will do my best to seek help. I know that it is important. Probably better than having a glass of wine every night. Or ice cream, or both!

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Marie_14
Marie_14
in reply to SewBears

Sew Bears wine is definitely not better than ice cream! Ice cream calms all manner of heart

break. I can't recommend it highly enough! The occasional glass of wine is fine but it is an antidepressant. You need something to make you smile!

So ice cream is great!

Tim would agree with me.

Marie x x

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journeyofjoy

I am sorry, Sew Bears. Not even a week to look forward to down the road. I know this isn't much but are you aware that the PD association gives 20 hours/year of caregiving at no charge? I have to remember to sign up for this myself. There isn't much help out there for us in the US but we have to cobble together every bit of help available.

There is also a grant that you can apply for that offers $2500 (one time) for caregiving. I applied for it but was turned down. It's called Cherie Levien grant (you will find the application on the curepsp.org site).

Joy

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SewBears

Thanks for this! I wasn’t aware but I will definitely look into it.

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journeyofjoy

SewBears (I love your name), see racinlady's response to my post. Pat is talking about Hospice being available sooner than the six month rule for some people with neurodegenerative diseases.

Let's look into it!!

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racinlady

Joy,

Are you using hospice? Hospice, thru Medicare, will cover respite care. You just arrange it thru your hospice social worker. There's more help out there for those in the US than a lot of people are aware of. Hospice care isn't limited to six months for many of the neurodegenerative diseases. They offer wonderful support to families dealing with PSP/CBD. Unfortunately, not every hospice is even aware of this so you have to be persistent when applying.

Pat

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journeyofjoy

Pat, this is news to me...good news! I've always thought it was for a diagnosis for six months or less to live, and I've even confirmed that with Hospice but evidently the office I talked with didn't know this. We are getting our referral to palliative care on Monday and will be making that appointment right away. I understand they will be of great help and will get us set up with Hospice when that time comes. I will ask the about special exception for this disease. I know Hospice is wonderful to have - they would have covered the $2000 hospital bed and mattress I recently purchased.

Of course, none of us have any way of knowing but I think my husband will be around for quite a while. Every time he hits a plateau, I start to think he's doing really well and maybe doesn't have such a bad disease after all. I think we're coming to the end of a plateau now. He is getting weaker, more shaky, and sleeping more. He's also so "crooked." Leaning so far to the right. I just now (1:30 in the afternoon) got him into bed to rest. This is the first time he's wanted to lie down this early. Usually he takes a "lie down" about 3:00 at my suggestion. He said he didn't sleep well last night because he was kept awake with a cough. I don't know if he's catching my cold (which hasn't given me a cough) or if his saliva/swallowing is becoming affected. He does a lot of loud throat clearing and has for a couple of months. But eating and drinking are still going well for him, other than dropping food onto his lap and onto the floor. The dog likes it.

Where are you located? I'm wondering what office you received this Hospice help from. The rules should be the same nationwide. We're in the Seattle area.

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SewBears

My husband’s cough was triggered by having phlegm build up in his throat. I took him to a Voice/Swallow specialist who taught him how to swallow better and that cleared up the coughing episodes for a while. The way hubby is sounding today I think I may need to take him back for more visits though. It’s always something! Our dogs enjoy food on the floor too 😂

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journeyofjoy

We will be getting a speech therapist soon. The doctor recommended it quite a while back but I didn't seek it out. I didn't think he was ready as his swallowing and speech were fine. The social worker told me this week that they can give you swallow tests. She made it sound like you may have trouble with this before you even realize it. Also told me that you can aspirate without being aware of it. It's a good thing we're getting palliative care set up because the doc doesn't talk about these things - probably not in his wheelhouse.

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racinlady

Hi Joy,

I'm in Turlock now which is in California's Central Valley. I see you are in the Seattle area. There is a very active support group in your area for PSP/CBD. I know this because I sat with some of their members at a conference for PSP/CBD a couple of years ago in the Bay Area. I don't have contact info for them because it was too far away for me. bayarearobin may be able to help you with this as she hosted the conference.

One more note on hospice. I ran into the same 6 month limit you did when I first approached hospice. It may be that some hospices choose to run their agency that way which I suppose is their prerogative if they think they are already too busy. In your area, there should be several to choose from. Just be sure you check to see how they are rated by medicare and check for other reviews. It is generally thought to be better to go with a nonprofit if possible. However, that wasn't my experience at all. The main thing you want is a hospice that will work with you as part of their team so you should look for one that will do that. It will all be worth it as their support is amazing.

Pat

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journeyofjoy

Hi Pat,

The support group you are talking about is at Swedish Hospital Neuroscience Institute and is run by the social worker in our clinic. We have attended once and will go back but there have been conflicts on that date for a few months. The patients and their caregivers attend that - it's not just for caregivers. This site, however, provides that kind of support for me - greatly needed as you know.

When we did attend that group my husband said "if those people have PSP, then I don't have it." Many of them were much more advanced than he is but on the other hand, most of them could walk and he cannot. The social worker who facilitates the group said every person could have been diagnosed the same day and they would all look different.

At what point did you get Hospice on board for your husband?

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racinlady

Joy,

My husband was in a hospice program just a little short of 3 yrs. When I contacted hospice, we were using a wheelchair some of the time, but he was able to walk very slowly with a walker as long as I walked with him with my hand on his waist so I could catch him if he started to topple over. He needed handrails and grab bars everywhere. He hadn't been able to dress himself, take a shower or shave himself or use the bathroom alone for a few months. He definitely couldn't be left alone anymore.

The criteria our hospice used to continue seeing him was only that we had to be able to show that he was declining. I just had to be sure that I told them whenever we experienced any change. My first inclination was to tell them how well we were doing, but that wasn't what they needed to hear. I had to get over feeling like I was whining when I told them about the problems we were having.

I hope this is helpful,

Pat

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journeyofjoy

Sandy is in a wheelchair FT, can't even take a step to transfer. Can't shower, toilet or do anything by himself. He brushes his teeth after I get the toothpaste on the brush. He feeds himself, although handling a fork is almost impossible. I am cutting his food into bite size pieces as there is no way he could use a knife and fork. I asked him to make a phone call tonight to order prescriptions and he can't use the handheld phone because his left hand is useless.

He was using his electric razor up until a while ago but the caregiver shaves him now. He can be left alone for a couple of hours if I'm close to home because there is no chance of falling. He can't get out of his chair or bed. Now that I'm actually typing this out, I realize how much he has declined in the last few months. I kept thinking he was stable but all these subtle things add up.

I'm sure when we get hooked up with palliative care, they will direct us to Hospice if that's an option at this point.

I'm thankful for his attitude. Just tonight we were talking about how we have a good setup in our home, equipment, a great caregiver, so many things to be thankful for. It sure could be worse but this is no picnic. I don't now what it will look like in the future, but none of us know that.

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racinlady

Joy

We were in a very rural area three years ago so palliative care wasn't available to us at the time or we probably would have tried to use that like you are. Trying to get that was how I got referred to hospice. I remember how I used to look back and see how things had been a few months earlier before I would realize how much my husband had declined. It's so gradual that you hardly notice as you're having to do more and more for them.

When I did my husband's time line for his brain autopsy there was a pattern of major decline about every six months over the his last four years.

Pat

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Dickenson2

I know how you feel. When I had John at home his two girls always promised to come and sit for say an afternoon but they always made excuses that they had to get home etc. Now he is in a nursing home they may visit every six to eight weeks stay 1 to 2 hours and then have to go because of the dog. However when they want to go somewhere away the dog is not mentioned. I think people are just scared as how they would manage. Friends say they would rather remember John as he was and do not want to visit him xx

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SewBears
SewBears
in reply to Dickenson2

Sad but true

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Marilyn_cbd12

What a disappointment for you! I admire your summoning up the courage to ASK. I am working on that part of it and would love to get a week or two away next year. I liked NannaB’s idea about renting a property that would accommodate family or friends. Agree that most people would be overwhelmed to step in as caregivers. The time away would have been something to look forward to.

Marilyn

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AJK2001

Good for you for asking, nothing ventured nothing gained, the person may have been taken by surprise and be thinking about it since may come back with some offer of help. I too like Nanna B's idea of a renting somewhere together with people that would ease the load for you. Would the person you asked to help be open to that idea? Maybe your daughter would like a trip away with her Mum & Dad? I have a friend whose son in law has MND and is very disabled now. They rented a place that even had a hoist for the hot tub, grandma, daughter, son in law and grandkids had a great time. So you have started the process but need to refine the plan, don't give up, there are many different ways to skin a cat. xxx

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Servena03

Oh! Sewbears you have been giving us all such good advice, and yet you need some help yourself 😍 My only advice is do you have a Parkinson's Association near, they care for PSP patients too. They have helped me with respite (although I'm in UK), if not I'm sure they can recommend a volunteers group, even if it means one day a week, it will give you somethIng to look forward too. I am about to contact our vol group, for one afternoon a week so I can go on the social bus for shopping, and every Friday afternoon for me to socialise with friends over coffee.

Oh by the way we had the doc call 3am this morning to John who diagnosed him with a bad chest infection 9am he had a reaction to anti biotics, and literally had a blow out, such a mess everywhere, all normal again now with the help of carers, and is sleeping with exhaustion and with the occasional cough, course then sadly my son left for his return to US, very tearful morning.

But Sewbears we keep going on for our loved ones. You keep looking for any type of respite, big hugs across the pond, Jean 🙋xxxx

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SewBears
SewBears
in reply to Servena03

I’m sorry to hear about John and your difficult night/morning. Hopefully the doctor will get the right antibiotic going and John will recover soon. Do you wonder if he’s had a chest infection all along and it was missed or is this a new symptom?

As for me having a respite, I’m sure there are avenues that I haven’t explored and I have some homework to do. The more I think about taking a break and everything else that would be involved the more I talk myself out of wanting to do it. I suppose this too is normal.

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Servena03
Servena03
in reply to SewBears

You know you hit the nail on the head, time will tell if we can get him back from this, out of hours doc is convinced it's not the antibiotics that caused what he called a overflow, he has actually had three of these today, he put it down to having too much of a variety of meds in one day,

As far as you talking yourself out of respite isn't the answer, have you thought trying a shorter break to start with now, as you definitely need one and then if you feel comfortable with leaving your hubby you can work on a longer period later, I had a two daybreak three weeks ago so I could go to my nephews wedding, I enjoyed the day time with relations but was lonely at night found myself texting back home, I much preferred our family holiday where we rented a disability cottage for five days, I was still responsible for John but had plenty of help and loads of fun, and so did John, would that be possible for you?

Thinking of you and hoping you do find help you so deserve it.

Jean 😍

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Mottsie

I am so very proud of you for asking & l know how disappointing it is to hear the word no. Years ago l asked for relief for one evening (2 to 3 hours). The No truly shocked me. But it taught me that l could also say no (guilt free) when this person asked for her many favors through the years. Sendin Hugs of Understanding... Granni B

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SewBears
SewBears
in reply to Mottsie

I like that. Saying no can feel powerful.

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Mottsie
Mottsie
in reply to SewBears

& it is a real time saver!

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