I'm new to the site but have been reading it for awhile. i was wondering if anyone has had a spouse diagnosed with dementia at an early age. My husband is now 56 and into stage 6 and my plan is to keep him at home as long as possible. I work full time and have caregivers come every day while I'm gone and this is working out pretty well. He's to the point where his sleep patterns are irregular and that's taking a toll on me but I'm working on adjusting his meds to help alleviate that. His speech is mostly babble now and I'm assisting him with just about everything. I have checked out some facilities in the area in case I get to the point where I need to admit him as I will no longer be able to care for him at home. i'm just trying to figure out how to pay for it. He receives SSI but as some of you know, that isn't much. This is the time of our lives I had hoped to travel and enjoy our empty nest and I have mourned that loss along with lots of other things. I'm ready for the inevitable but it's just all so sad.

Janie5301

Janie5301 - I'm in pretty much the same boat. My DH is in year 6 (he was diagnosed a little later than yours, but was in his 50s). He can still talk but it's limited. He's either in day-care or I have someone in the house with him when I work full-time. We have 3-kids, one who is still in h.s. and two who are in college.

I figure that I'm going to have to sell our home to pay for NH when that time comes. The crashing real estate market really worries me, since this equity is going to be critical. After paying off the mortgage, I figure that I will have enough money for a few years of a NH from that money (I'll have to use my work income to find somewhere else to live for our family). It sounds harsh, but I have to try to figure out that he'll only have enough years to live to match the money from the house. I live a financial balancing act week to week, particularly since I added his daily care to my expenses. I have a good job but this is still an overwhelming financial burden.

I sure understand how hard it is to know that you're not going to have years of travel or closeness with a spouse. The future looks very, very lonely. Hey, the present is very lonely too....I miss having a spouse to talk to and to share parenting with, never mind the simple things in life of going grocery shopping together, going to the movies, etc. After being married for so long, the loneliness is awful. We're widows without being widows.

Good Morning Janie, I am so sorry to hear about your husband health.. I am at the other end of this. My dad who is 88 has dementia and my mom is still in very good health so all of us 6 children try to help out but there really is only three of us that really put the work in and I know it work trust me... After reading your post I was really interested in how your husband reacted to the in house care. We are looking at least two days a week (showers) and getting him up at a decent hour.. My mom just can't seem to do it and we all work.. My mother fears he will go berserk, also she is from a totally different generation, so it is very hard to tell her that it is ok and no one fault... If you have anytime to respond and let me know how your husband did handle that I would so very much appreciate it. I want you to know my heart goes out to you but as we tell mom you have to live as much as a normal life as possible.

My thoughts are with you...

JeanUSA

Jean,
Thanks so much for your response. Early in my husbands diagnosis, we talked about what he wanted as far as "future care" and he said he wanted to be at home so that's what I did. I did try adult day care at a wonderful facility probably back when he was in stage 2-3 and he liked it one day and then the second day it was just too much for him. Most of the people there were farther along and that freaked him out so I found a mother/daughter team that really work well with him. They started last Fall and were still able to engage him in activities ie. games etc., but now he pretty much paces around the house and now that the weather is nice, they take him out for walks, rake the leaves and anything else that will engage him. He can no longer communicate in a normal way pretty much just babbles. The TV no longer engages him but music still does so we play alot of Paul McCartney concert videos. As for your Dad, he might enjoy a day care facility with people closer to his own age as they have activities and he might stay engaged a bit longer. With my husband being diagnosed so young, there weren't alot of people his age. That might not be a problem for him now as he's pretty far along, and I've thought about doing some respite day care on the weekends because i can't get much done with him following me all over the house. I hope this has helped a bit and I'll keep you and your family in my prayers...
Janie5301

Beginning,
Thanks for your response...it's sad, but nice to know I'm not alone. As far as a NH goes, we have some here that are non-profit, and that allow you to stay once the assets are gone. I'm not sure how it all works but it might be something to look into as you still have children who depend on you. I believe they invest an initial down payment therefore allowing the patient to stay once assets are depleted. Like you, I'm very lonely too. I have two adult sons who are currently living & working out of town so it can get pretty quiet around here. Take care and let's keep in touch...you and your family are in my prayers.
Janaie5301

I am so sorry for both of you that your husbands got sick at such early ages. It must be so hard. I only know what it was like to live with my mother, already well advanced in age when it struck her down.

Yet I do have one thought, which I hope is appropriate here: having lost my husband after 36 years of marriage, not to death or Alzheimer's but to another woman, and also being alone and sometimes lonely, I can only say be thankful yours both did not walk out on you but got a disease which took them ... in other words, they did not deliberately desert you. I hope this makes some sense. I too am like a widow but not one .... and at my age it is not easy - virtually impossible - to meet someone else ...

love,

Martha

Martha,
I can only imagine what you're dealing with not only your husband but caring for your Mom as well. What do you do for you? I know that I gave up my yoga class last Fall but I still do my book club once a month. I'm at the point where I'm going to start to asking my daytime caregivers to help me out so I can maintain my other activities to help keep my sanity. Things have gotten progresssively worse in the last 6 months and I'm wondering how long i can keep my husband at home. I really don't have the money to do it but I'll find it somewhere. You need to get out and connect with people whether it be through church, senior center, volunteering or something else that interests you. Hopefully that will help to balance out the lonliness and caring for your Mom. I do understand what you meant about losing our husbands to the disease and not another woman....i'm just not sure what's worse.

Keep in touch,
Love Janie

Dear Friend,

I am all through with caring for Mom - she passed away in December 2007. I only lived with her from 3/2000 to 6/2005, and then she had to go to a nursing home.

My life has straightened out since then .. all is well with me, but I am living alone and probably will for the rest of my life. However I do have friends, a wonderful church, activities, grandchildren, and a full life. While living with Mom - right after the marital breakup - those were the hardest 5 years of my life. But I got through it, and you will too. I just wanted to say life deals many of us a bad hand .. but we can still survive. Maybe it even makes us stronger!

Good luck to you, and you will be in my prayers.

Love,

Martha