Hi Patti, welcome to the forum. you are in for a rough ride, and we will all try to help you as much as possible. Please be sure and post and read on the FTD and ALS thread in the forum. we have several other caregivers here who face the same challenges as you do and they have a wealth of info for you.
as far as home care goes--yikes. there is no good or easy answer. Mostly, if you have longterm care or disablility insurance you are in good shape, otherwise it has to come out of your own pocket. not a pleasant thing but the truth. Medicare does not pay for it. regular insurance does not pay for it. If he is far enough along for hospice that is some help but not full time or even part time.
perhaps you have a network of friends or family that can h elp. there is a website called caring bridge . org which helps you organize a personal network of help. I have not used it but heard it is really good. you make a callendar and list specific needs, then send a link to everyone you know and they can sign up for it. for instance, you can put on it--visit "john" from 9-2 every day. then maybe diffenent people can sign up to do a day each week which would help you. or you can even put on there need the lawn mowed, the laundry done, grocery shop, fix the leak at the sink, etc.
I think most people here rely on themselves or family until things get really bad because in home care is too expensive for most. It is why we are all exhausted most of the time!
I cared for my husband by myself for 5 years (2 kids at home who help a little too) and iat almost killed me. (No FTD) then he went on Hospice for a year. we had 3 baths a week and a weekly nurse visit. it wasn't much but it really helped. they discharged him last month since he was not progressing fast enough and now I finally broke down and got parttime in home care. Husband loves the woman, she bathes him, feeds him, does a little cleaning in the bedroom and kitchen washes some laundry and cooks a little. I think the FTD really adds an extra hard level to the care you will need to provide, so it is good you are looking at options now.
Call your insurance and ask for a case manager to assist you. Barbie had great ideas as well. Another site is helping hands. Com. Your ALS team should be able to help as well. Keep us posted, we'll help where we can!
Thank you for the advice. I like the idea of the calendar. I have had a lot of people offer to help. Also, I have insurance through work and I have to find out just what it will cover. I have taken family leave for six weeks but want to go back to work 1/2 time for my sanity. My husband doesn't/can't understand how sick he is and doesn't know he can't stay by himself. I don't know how to bring in help and have him accept a stranger.
I work too and honestly--it keeps me from going bonkers. I know there may come a time when it is not possible but for now it helps me and helps our family finances.
if you have people who offer help==do not wait take them up right a way. some will be just empty offers but some people will really step up. your husband may be resistant but you have to do what is right for him especially if he has FTD so sometimes you have to be creative in you explianations and tell white lies to make him safe and cared for. falls and choking are very dangerous and espeically for FTD pals because they do not understand they are doing something dangerous.
I hope you find your insurance has in home care coverage!
You are wise. I believe many of our friends want to help but don't know how. I am sure if I let them know we ned many will find wasy to help.
It sure helps just to be able to communicate with others in my same situation. Thanks again, Patti
Hi I am new to the forum. My wif (Penny) was diagnosed about 10 months ago. She is 54 years old and is confined to a powered wheelchair. She has no leg mobility and arms are 80% gone. I work until 5pm. Her mother comes 3 days a week, her sister comes one day a week and my company allows me to work from home one day, and I am home on the weekends. We have hospice, 3 days a week an aid for showering and 2 days a massage therapist, and nurse once a week. My question is going to sound really shallow but I am having a hard time dealing with what it has done to our lives, and my feelings of guilt. This is the hardest thing anyone could ever go thru. It has torn our family upside down. My wife and I cry alot. We are both on depression medication. I have horrible thoughts... Right now I struggle with things like... well when I get home from work, I take my wife to the bathroom, then we eat and then typically sit and watch TV. Penny has alot of anxiety, she gets uncomfortable often and asks for me to come over and adjust her leg, clothes... And I want to help but I know inside I am bothered. It's not that I don't want to, I think I am just pissed at god (if there is one). I am still very angry about this whole thing and have a hard time believing anymore. When I get to work it is constantly on my mind. I think to myself, I want to help Penny in every way, I want to be a better caregiver and give my life to her. But then, by the time I get home it all starts over again. Please dont misunderstand I deeply love my wife, but I have these feelings and know I would be lying to myself if I didnt admit to it. Please Help
TO ALL...As a CAL with a PAL with FTD...It is particularly hard. There are some wonderful websites that people will help you. One is LOTSA HELPING HANDS. One is CARING BRIDGE...Both really good at getting people to step in and help you out! Jkungle...welcome my dear...you have found a family here. It is a horrible, tragic disease that hurts the caregiver as much as the PAL...Hugs to you both. We all have been through it - the highs - and the lows. (And the lows are so, so low)...So I will send you hugs from Florida....from someone you don't even know - who loves you both. <3
Suggestion: Try your church etc. Even if you are not afilliated with a religious group, they may have people who volunteer to help. 'So hit up any organised religions around you. Also Knights of Columbus, Moose, Masons, ete. any civic club or groups may be a source of help. Even schools for volunteers to run errands, lights house keeping or respite while you are in the house. Best wishes to you. Peg