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By flowers12 On 2016.11.08 23:13
I'm so frustrated, tired and feeling so hopeless that the thought has come to me that maybe I should spend our savings on fulltime help and have a life that isn't so full of unhappiness and frustration instead of thinking "oh, we have to have the money for the future". Who knows if we will be alive in 5 or 10 years? We could survive on what we get monthly and we can sell our house and live a simple life in an apartment. I've been waiting for a week and half for the caregiver company to come out and do their assessment of our needs. I think I'm going over the edge and I don't think I can handle this mentally anymore. Just needed to tell someone since I have no one who could possibly understand.

By jcoff012 On 2016.11.09 11:42
I will NOT tell you to "hang in there"....this disease takes its toll on too many. I will say, everyone here understands your frustrations and we want you to know we are always here. Vent. Cry. Move ahead or move on at your own pace.

I agree that you never know what the future brings. We saved for 20 years, but decided a year ago the same as you...why? So, to let you know someone out there agrees...*We* are doing the same...we began by traveling, buying our grandkids gifts, and we are taking each day as it comes...no reservations. We are here for each other, but we are doing it as we want.

Many would say we are in denial, but most of you know we are FAR from that! We just plan to spend our lives as best we can...no excuses.

You owe nothing to others and I wish you well...in peace. Hugs and love always.

By Busymom On 2016.11.09 13:32
You should absolutely do what is best for you and yours, and you know better than anyone what that is. This is your life, and you are entitled to make it as good as possible. Maybe this is the rainy day that the savings was there for... Once this disease came into our lives, it changed our plans for the future, and we couldn't control that, but we can control how we deal with it, and we can and should do whatever it takes to make life as good as we can make it.

It is a difficult and misery-filled situation for us all here, we all understand very well, and we are always here to listen and share.

Hugs to you!

By kathycruz7965 On 2016.11.13 01:37
I have been feeling this way too - I have not posted here yet... just read and felt like there are so many of us going through the same feelings... this is not what we had thought the future would be. I am 51 and my husband is soon to be 64. Along with his PD, my husband had spinal fusion surgery last year and a knee replacement coming up this week. We have sold our house, moved to an apartment (which in Seattle is still too pricey) I am working a 60+ hour a week job so we have steady income and the insurance and it is starting to get to me at times as well. I am pissed, sad, resentful, and guilty all at the same time... sending good thoughts to you and your husband.

By flowers12 On 2016.11.13 14:22
Thank you all so much for your comments and good thoughts and prayers. It just get to us all I know. My hubby is 75 and I'm almost 70. Other than PD he's healthy. I'm healthy but feel like I'm breaking down from stress and lifting. I just want to find a way where I can get up in the morning feeling good and have a smile on my face and be loving to my hubby. The guilt of being grouchy and resentful really eats at me. This is not who I've been and hate seeing myself turn into this person. I'm going to talk to our financial people and see what the situation looks like if I start using our savings now. It is a scary thought to not have that nest egg but at our age we may not be around to worry about it. I think having some peacefulness and happiness for both of us now is whats important.

By carman96 On 2016.11.14 02:03
I have the same situation. My husband needs help with everything.
I have some help but need a lot more.
It's so expensive.
I also need to start using our savings because I just can't do this anymore, it's destroying my body and my mind.

By moonswife On 2016.11.15 04:33
Flowers, Kathy, BusyMom, Jane....we sure sing the same song just a slightly different rhythm. It is as if Parkinson's caregivers and jazz players have something in common. We just all do it "our way". Once again at our house an infection, led to nausea, pills not staying in stomach long enough to do their job, a fall....result. Compression fracture of a vertebrae. Six days battling staff about the pill regimen and nasty complications resulting from inexperience with catheter sent him howling to go home. The only way they would discharge him, was to a skilled nursing facility, or professional care at home (since I still work at the business I own). We hired help, and they are very, very good, but in Southern California market EXPENSIVE. My two kids are in their 40's and live close. They calmed the angry beast in the hospital when he got accusatory toward me, believing "I wanted to keep him in the hospital". Yeah, sure I loved sleeping in a chair with one eye open making sure the staff gave the PD Rx "on time, every time, in the right quantity and not with protein." I felt like the Drill Sargent so I bribed them with the Halloween candy I was not passing to kiddies. We were to spend Thanksgiving with all kids and grands in Catalina....CANCELLED, have cruise tix for Nov. 28th...probably CANCELLED, but he is home, like he wants. He hates the foley, and the urologist told him today two more weeks. Just hope he does not fight the insurance provided Home Health RN about the meds going into a PIC line or re dressing the foot wound. I am thinking of a reverse mortgage to pay these caregivers until I sell my business. All in all.....we are all in the same boat, my friends.

By Mitch On 2016.11.16 19:32
For what its worth, our house burned down in forest fire in Ca and we got paid by insurance, instead of rebuilding, we bought a motorhome and we are going to see how it goes.....We are staying with grandkids now for couple of months (they want us to stay with them) but its just tiring me out doing the housework added and stuff......I think the rv will let us be together longer with less stress........we will see........married for 57 years, parkinsons found in 2007, tho had it for some time before, just not facing it....im 76 and wife is 75.......been 50 years since we
ve had a motor home.....out to be an experience............

By Lynnie2 On 2016.11.17 20:28
Last spring I finally decided that I needed help as I was getting stressed out.
My friend said that the Alzheimer's Society is good for helping out as besides PD he has some dementia.
Now he goes to The Day Away Program for 5 1/2 hours and I think he enjoys it now. At first he wasn't happy, but they are so good to him and make him feels special. It gives me a day to do things on my own too.
I also have a PSW come for 6 hours on another day of the week and she is excellent with him.
The PSW is $12 per hour and the Day away program is just $16 for the day which includes a hot lunch.
I figure my health is more important and if I didn't get these breaks, I would end up in the hospital or something more serious.
Last winter I broke down in church and the minister realized I needed help, so we had a talk about getting help.
I have a lot of friends that help me if I need them too and I sometimes have lunch or coffee with a friend during my days off.
I hope you get some help for your spouses too.

By LC On 2016.11.09 13:16
Flowers12 I know exactly how you feel. We saved for the time we both would be retired. We were going to travel and enjoy life. That is never going to happen now. My husband needs constant care. I am fortunate enough to have an Adult Day Health Care center close by. However, this is not what I expected for our retirement. Some days I feel like I am losing my mind, other days I am so angry. It is so hard for us as caregivers. You need to take care of yourself.


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