Sometimes I don't think I can continue with the stress from work and home. I work full time. My husband is in the moderate stages of AD and has continued to progress a lot over the last year. I suspect he is at stage 5. When did you know that you couldn't work anymore and had to quit to take care of a loved one, hire someone full time to come it, start day care or look at assisted living?
My guess is if you are asking, it's past the time to make a change.There is a thread somewhere on this board that discusses your dilemma. I will try to find it.
I got laid off in November '03 and assumed care of my parents in Dec. Mom with cancer, and Dad with AD. By time Mom passed and Dad was placed my DH was diagnosed with AD following a surgery. So I went right from one caregiving situation to the next. I wish I had been able to find work before his diagnosis, but I believe by this point I would have been forced to quit due to hired caregiving costs. I would have been working just to pay them. But, on top of that my kids wouldn't have a parent home who was able to do the things parents do. DH was just another one of the kids. We are a little over 3 years since DH diagnosed, and it is only this past fall that I finally started having a caregiver a couple hours here and there so I could get out.
Diane - I don't know how anyone deals with working full time and being a caretaker. I would think Stage 5 would mean he could no longer stay by himself. Several here use daycare and are happy with it. That is not an option for me now. Some have caregivers full-time or part-time. I have not needed that yet. I am retired. I do have a lady come a few hours every week or two and I go into town and shop or something. I have 2 daughters living close and they work but if I need someone after hours I can call on them, but seldom do. Son in Law is disabled and is available during most any time, but I don't use him a lot, however, I do use him for my handyman for pay. Other times I take him with me and make quick stops at the library or store, etc. Sometimes he will go in with me but usually not. He has severe spinal stenosis and cannot walk very far. He has been better lately than 6 months ago and we seem to be on a plateau. There will come a time when I will have to have more help.
If you possible can, I think it would be good for you to work as long as you can to avoid being isolated. I think you will have to make the decision yourself. Some have to work to keep Insurance. Good Luck
Imohr, for me working full time and coming home and being the evening, night and morning caregiver is easier than being a 24/7 caregiver. I love my husband/lover/friend and have been married to him for 47 years, but that would drive me up the wall. I have to have contact with others. (I guess you all have figured that out about me already!) I work full time (and have a very understanding boss, who knows that some days I'm 30 minutes late because I'm having to take care of my husband or cleaning up after him - and doesn't mind) and then come home and take care of my husband until bedtime, then I am up with him three times during the night, then up in the morning for breakfast and the morning routine before going to work - where I have wonderful co-workers and a job I love and need. I have a stress-free job, which is a blessing. I feel for the 24/7 caregivers who never have any time alone.
Right now, my 45 year old daughter and 19 year old grandson help me, and I couldn't do it without them. I am very lucky to have them. I have to have the income and health insurance as well.
I'll have to agree that when our ADLO reaches Stage 5 this is the point where they are in need of full time care. I am seeing my DW beginning to slip into Stage 5, she is having difficulty with so many of the functions of daily life. She is no longer able to keep the house clean, her cooking skills are almost gone, she is unable to deal with the packaging on boxes, the new zip lock reclosable packages used for frozen food packages seem to be a mystery to her, she no longer pays any attention to the age or quality of the produce and fruit in the refrigerator and she seems unable to cope with more and more of everyday lifes little bumps and turns. As the days pass I am more and more concerned about leaving her at home unattended.
It won't be long until I retire, by October at the latest, but I will retire earlier if needed. At that time I will become a 24/7/365 caregiver. This is not what I planned for my retirement, but it is what it is. Work has been a mental blessing and an escape from my part-time caregiving duties, my employer is very understanding and I have been able to adjust my work schedule, sick days and vacation to accomodate many of the little emergencies and appointments we need to deal with. The pay and the fringe benefits come in quite handy too.
Yes, Stage 5 is definitely a major turning point in AD.
May I suggest that you all put as much as you can into your own IRAs or 401Ks, before you retire, IF IF IF they won't be assumed to be part of your spouse's assets - this varies from state to state.
Jimmy, maybe you can work part of a day a couple times a week, or in some capicity and give yourself some breathing room. You would need to get someone to stay with her or take her to a day care. I hope you can get something worked out so you can have some time for yourself. I think it is great you guys here are so giving to your wives.
I'm just now getting to read responses to my question yesterday. There just isn't enough time in a day anymore! I know you all understand. I try not to leave DH home alone. I have hired someone to come in on Monday's and Tuesdays from 10-4. I leave by 6:30 in the morning and DH doesn't get up until about 8. I am usually home by 5 so it is 3 hours he is left alone right now. However, I'm not sure how much longer that will be the case. My mom lives with me full time so she watches over him and makes sure he eats Wednesday - Friday. I'm here on weekends and for the exception of 6 hours during the week he is never alone. Yesterday I took him to see the dentist. He had to have reconstructive surgery awhile ago and has 6 implants that hold a set of teeth in place for the bottom. This is the 1st time I heard of this doctor so I took him in. I take him to all doctor appointments and I keep the car keys for our 2nd car in my purse. Anyway, turns out he hasn't been cleaning his bottom teeth so it is supposed to be cleaned 2 times a day, morning and night. For now, it looks like i can do it in the evenings during the week and we are good on weekends.
I don't know that I could do caregiving full time. I love my husband but it is really hard. I have lost touch with friends and feel so isolated sometimes that work is my only outlet - boy what a life!
Briegull - I am putting extra 401K funds in for catch up. I'm also looking into what to do with DH's 401K. I have to look into penalties if I do the same with my 401K as well. I may just end up using his 401K to pay for assisted living if it is needed sooner than later. Our attorney indicates that it should be put in an irrevocable trust payable to me. We have to get our assets down to under the maximum to qualify for nursing home care should or when that becomes a need. If DH is anything like both his parents, he will definately need a NH or assisted living.
Joang - I know you have your hands full. If you find the thread great, if not don't take on the added burden. I will make it through.
A suggestion to jimmy and anyone else why has the time to plan on moving to 24/7/365--not just landing in it. Start now, getting your LO used to some in-home care and possibly some daycare. Change is very hard on our LOs. By starting early, you will already have some help in place, which will allow you some respite time and errand time. It will get some basic chores done without eating up your time--time you need for the things only you can do. You have to talk to Dr.s and caseworkers, anyone can do dishes or run laundry. Do you know how to do the laundry, cook,change a furnace filter, mow the lawn, . . .? Some of these youcan start getting a handle on before they become 'your job'. From experience, even though I'd been caregiving DH fulltime since his mental breakdown, I was still hit between the eyes when he was Dx'd. There weren't enough hours in the day to keep all the household stuff done and deal with the PT and OT coming to the house; and the appointments; and the case managers; and the new meds and schedule;etc. and so forth. I was running in crisis mode for quite a while and a lot went "On My List". I still have lists, but I'm finally on top of things well enough that we're past the crisis type frenzy. I have a Do List for the coming day. A do list for the near future. A do list of projects--seasonal or for when we can get to them. A Wish for the future do list. Slowly we are actually getting things done that are on the long term lists. Annnd...I finally feel as though it's really okay to arrange actual, away from the home respite for myself. Up to now I only took it when I had to be away--my Dr. appointments; hernia surgery; colonoscopy. I went to my nieces wedding last November and I'll be going to a play my brother and his son are starring in, in Feb. THAT'S RESPITE.
Good ideas for me to read too. I should have hired someone to come in on a regular basis a year ago. Sometimes when things are going 'well' enough, it seems like thats not necessary 'YET'. Then today, when it would help so much just to have someone ELSE to be on duty here... those things are not in place. Good idea for the lists, thinking it through and actually 'workin the lists'..
I have already been doing a lot of these chores after work and on the weekends, we live in a one floor condo/townhouse and do not have to deal with any of the outside work like mowing the lawn. I haven't been behind a lawn mower for at least eight years. I do need a little more practice in the cooking department but I am able to do a fair job with it.
One of the things I have contemplated is selling the condo and moving into a rental 55+ community that does offer some minimal services such as housekeeping as part of the package. It is not an assisted living situation by any stretch of the imagination but it would cut down on some of the responsibilities associated with home or condo ownership. This is something I wouldn't do without some extensive investigation into the situation.
Change is difficult for them and this is a consideration and would definitely involve a transition period. There isn't really anything that ties us to our present neighbors or neighborhood, The apartment is only about a mile or so from our condo so it wouldn't involve a lot of changes in many of our habits or destinations such as grocery store, church, doctors or hospital. It would provide DW with some socialization opportunities. I am sure there are probably other couples in the complex who are in similar situations.
I don't know if this is a viable option or not, has anyone tried this with positive result?
jimmy, Be sure you check out the actual opportunities there are for social contact if that is one of the reasons for moving. We moved into a rental apartment in a building for senoirs in October and I am a bit disappointed. The weekly coffee is too early for us, bingo is not high on our list but we go just to meet people. We do try to take part in any opportunity but find that people, for the most part, still live behind closed doors.
Jimmy I have moved 3 years ago. We built a new home 1/2 mile from our old one with the same everything in the neighborhood. We live in a rural community and neighbors are within sight but not sound.
I am 100% happier in our new home and I think that is VERY important. The caregiver should surround himself or herself, as much as possible with positive things to help us cope with this terrible disease.
At the time of the move my Mother was living with us, I am an only child, and I tried to think ahead a few years. Our new house had room for her to sit and watch TV beside a large window as well as a seperate one for us. She passed away this May and we really have excess room now but for 2 1/2 years it gave us all a extra measure of privacy. I was able to keep her here the whole time.
We still have the maintenance, upkeep and lawn along with 19 acres of land but one of our daughters lives next door and another one 1/2 mile away. We don't socialize except for Church and my husband would not want any more. I had 3'wide doors throughout, handicap bars in bathrooms, a walk in bathroom which we don't use, and no step exit to garage. A garage now without having to be in the weather and the best thing that ever happened to us.
If I had no family living close I would consider a nice assisted living facility where they have the cottages, because no way could I keep up what we have now and it may come to that before it is all over. I have not been able to sell the old house and that is a weight hanging around my neck now.
Another reason for the house now it we may need to place dh eventually and the division of assets will kick in and the house is protected for the spouse as long as she lives as is 1 car and some money. So, I built a medium upscale place that will have good resale potential down the road someday. If you sell your house and move to an apartment and you place your dw, you need to watch your spend down money.
Jimmy, we moved into a "retirement" home 1½ years ago. It has been a big help for me - evening meal provided, light housekeeping included, other people to talk to, no repairs to worry about. Each evening we sit with 2 other residents - usually 2 women since there are only 2-3 other couples here.
Regarding cooking, when I took this over I knew nothing about cooking. I found a magazine called "Cooking for 2". It has been a big help.
The first time DH wandered away for a five hour "walk" and I had helicopters, police, volunteers and bloodhounds searching for him was the breaking point for me. He is functional in most ways but should not be left alone. The electric company guys brought him home. He was on a street with the same name, miles away in another city! I suspect he got a ride from someone who thought that was the right street. In any case I found someone to exchange room & board for 3 days of care (all day) when I work teaching at a college. When I placed the ad on Craig's List I got an overwhelming response from people who were interested. I think it's the economy. I found a wonderful gentleman who helps with shopping, housework, and cooking (he's French!), he's well educated and he is a great companion to DH. I like him too ;-) I did a background check and called all of his references including his boss (he works the days I am at home) and it has turned out to be a perfect arrangement.
I have thought about selling our townhouse and move to assisted living. Then I wondered what that would mean after DH is gone. I would not have a home and chances are I will return to Florida where the children live since I have no family here. Would it be better to stay where I am and place him when I can no longer take care of him? If anyone has any imput on this subject I would like to hear from you.
Bama, before I got live-in help I researched "assisted living" retirement communities. The woman who gave me the tour took me aside and told me frankly that she would discourage my moving into the community. She was about my age, maybe 5 years younger (I am 60) She said it is depressing to her and she just works there. She said the community is lovely, the services wonderful but there are many deaths each month and the average age is almost 80. If you are in good health you would probably find that it might be a very difficult place to live although there are activities and beautiful surroundings.