As promised, Part II of the series on Isolation is now posted on the home page - www.thealzheimerspouse.com. I invite you to log on and read it. I can only give you suggested solutions based upon my own experience and what I have seen work for myself and others. After reading the blog, please offer your suggestions and solutions. Thank you.
Probably keeping my job as long as possible helped me from becoming totally isolated, although the job was no picnic, and I paid a fortune for full-time aides. Hiring aides to let yourself go out on evenings or weekends is problematic--they don't want those kind of hours, and absenteeism tends to be an issue even if they do accept the assignment. In terms of using volunteers: All they can do is sit and keep the patient company. If real, hands-on care is needed, a volunteer can't do that…i.e. transfers, toileting, incontinent care. I had good luck with a couple of three-day-weekend getaways to writer's conferences or music conferences, because the live-in hours made it worth the aide's while to take the assignment. I was able to fly out-of-state for five days to assist a daughter who was having surgery, because the five days of live-in pay made it well-worth the aide's time. After 14 years of Alzheimer's caregiving before DH died, I would say that getting out of the house for fun once a week is just not realistic. I think that besides going to work, being able to get on the Internet in the evenings and weekends saved my life, as well as just reading books. Books can transport you to all kinds of other worlds, and can be picked up and put down as the AD chores dictate. The trouble with advising AD caregivers to go out and participate in groups is that we can't really participate much--we are always on call for our spouses--we can only contribute so much of ourselves, and it's usually not enough. For me, it was church choir, which I loved and participated in for years. But as the Alzheimers worsened, and DH could not be left alone, I could not go to choir practice--or sing Sunday mornings--or be a cantor any longer for the Masses that were not choir Masses.These were all maybe an hour to an hour-and-a-half segments of time--not anything an aide would want to cover, or that any friend or neighbor would want to help with indefinitely. I tried singing with the Methodists, too--a great group--but the same issues with DH made me leave that choir, too. Just an example. (Hope this post makes sense--the grandchildren are at me, and I can't think straight. Sorry.)
I was a complete failure in this category. I could have been the poster child for what not to do! We live in a remote area, no adult daycare, the VA was a two hour trip and Lynn would not accept in home help. When I did reach my breaking point, it was too late... Lynn had grown accustom to only me and was so aggressive that the agencies the state set up for us to give me a break said flat out that they would not subject their help to Lynn's aggressive behavior. And that was when he was on Seroquel and behaving better.
Looking back, I should have insisted on in-home help much earlier in the disease. No he didn't want it, but I needed it! So my best advice would be to get help early on, before it is even needed. Perhaps that way our loved ones will be able to accept it more readily when we desperately need the respite.
I joined an AZ support group that met at the local Senior center about 4 years ago. I said then that Ron was getting to the point where I could not leave him alone. A member of the group recommended "Alice" who had helped with her mother. She was not from an agency but I interviewed her and thought she would be a good fit. I told her that I was going to tell Ron that she was coming to help with the cleaning. The first few Fridays we did exactly that and got all the windows cleaned. After that, when he was used to her being here, I went out to do errands.
A few months later there was a speaker from a home help agency (like visiting angels) at a "Senior Circle" meeting. Our local hospital has Senior Circle. there are lots of talks with professionals covering a wide range of topics. At the end of the meeting I said "how do I sign up". That time I went through 3 people in 4 weeks but then got "Karen". Karen was here for us on Tuesdays to the end. If I needed her for more than the scheduled 3 hours she made herself available. As Ron became more incontinent both Alice and Karen just did what needed to be done.
I was fortunate to be able to afford to have someone twice a week. If I had to go pick up our Downs Syndrome son at his facility either Alice or Karen was willing to stay an hour or 2 longer. On Tuesdays I went for exercise and then to a knitting group that met at the supermarket Café. On Friday it was exercise and the routine errands or appointments. Even after we started Hospice 10 months before he died I kept to the same schedule. Getting out of the house twice a week kept me sane.
This is an outstanding article and if you still have your spouse at home, please, please get help and get out of the house. Mine is placed now so I am looking forward to the next blog. I did have help through an agency. The minimum was 3 hours per week so I had her come on Wednesday and since my husband used to do the grocery shopping I would give her a list and they would do my grocery shopping. I worked from home so it was a gift to have him out of the house plus it. Was one less chore I had to do. I have been in a support group since the beginning. I was in an early stage group with him for about 3 years and then a later stage group since then. I think I need to find another support group now because I find I want to do activities and be with people who are not related to his disease. I found that several of my early friends have moved on usually because their spouse died and mine is still here. But that is okay. I do believe the Good Lord does send people in all forms to us through the length of this horrible disease. I have started to do some things that are not related to the disease and it feels okay. I think getting involved in your church is great advice because you not only are socializing but it helps you spiritually and emotionally to be with caring people whether they have alz in their life or not. Thank you Joan for your willingness to share your story. You are helping so many.
I agree with Joan, elizabeth, MaryinPA and CO2 about getting help. My husband was like the Energizer Bunny. He had to be watched every waking hour. Three years ago, I hired an aide 2 days per week from 5 to 8 p.m. She was a companion for my husband and also shaved him, went shopping with him, and cooked supper. I wondered how he would react to someone else in the house but he did not bat an eye. This enabled me to go to events that occurred once a month: out to dinner with my girlfriends, garden club meeting, support group, and hairdresser. On other days, I just went into the bedroom for some peace and quiet. She could also come in an emergency, like when I fell on my face and had to go to the ER!
Six months after that, my husband started day care 3 days per week. Like CO2, I work from home. The day care allowed me to get some work done and earn some income.
About six months after that, I added a fourth day to my husband’s day care and also started with an agency aide for several hours on the fifth day.
As far as the cost, I paid the privately hired aide $90 per week ($15 per hour) and paid the day care center $60 for the 4th day. I could not afford this and often ran up debt but I did it anyway. Three days of day care and the agency aide were paid for by the V.A., with a small co-pay from me. I realize how lucky we were to have V.A. benefits.
The biggest difference was with my work. Before, I felt like a second-class citizen. I work from home but sometimes I have to go into the city or to other nearby cities or to our state capital, which is 2 hours away. Since I could not do that, I had to get extensions of time on most jobs and I get an exemption from continuing education requirements. This demoralized me even more. After I got help with my husband, I was able to do most things needed for my job, although still on a part-time basis. When I did go out on a work-related trip, I came back in a much better frame of mind and on the few occasions when I went to the capital, I actually felt giddy when I got back. For just a few hours, I felt like a competent professional, not an imposter.
As far as the other stuff, the dinners with my friends were the best. The hairdresser was non-negotiable, of course. But elizabeth is right that even with help, you still don’t have much of yourself left to contribute. I could not volunteer to work in the garden club’s greenhouse, which I had always enjoyed, and when I had to pay someone so I could go to the club meetings, I realized I did not enjoy them, so I stopped going. The support group was just more time in dementia land but the people were nice so I went most of the time. I don’t think it helps as much as this website does.
My husband is in LTC now. Due to my personality and the nature of my job, I’m still rather isolated, but I’m no longer demoralized. I am my own person again.
Yes myrtle you are fortunate to have the VA benefits. I got help through our Council on Aging and they basically paid for caregiver help up to a maximum amount. I am glad I did it because now I do not think they reimburse. It depends on the grants that they get. Before I placed him I still did activities but did not enjoy them because once he could not use the phone I was nervous leaving him alone and felt the need to "hurry home." I had tried daycare but it was expensive plus I had to transport to and from which was a good 20 minutes each way. And then it took time and money away from up my job. I find now that no one calls me to have lunch and it seems like I have to initiate the call to set it up. I am not in much of a mood to do that. I like what Joanne said about sometimes friends are just for a short time and not a life time. I have been focusing on that and it does help--chatting with an exercise person at the y or standing in line at the grocery store. These people do not have to be an intimate close friend but they are there and do help me socialize which is what we all crave as we continue the journey.
I have used several different outlets for dealing with my own isolation, plus making sure my husband has remained socialized. The first year after my DH was diagnosed I spent a great deal of time securing his SSDI benefits, dealing with the IRS after closing his business and activating his private disability insurance, so I was very busy. I could leave him at home and for a time he was still driving. Then I was able to secure a part time job which lasted for about 18 months. During that time I began to send my DH to an adult day program one day per week. The cost was $115 per day.
I lost the part time job, but continued to send DH to the day program. I realized I had to step up the day program when he walked into a home in our neighborhood without being invited. His desire to walk was becoming difficult to control so I then began to send him to the day program 5 days per week. This was all private pay until last spring when we qualified for some benefits through our state's department of aging. Unfortunately I had to withdraw him from the program this September when he became increasingly restless and seemed to require more one on one monitoring. Now we are together 24/7 and my respite hours went from 30 per week to 4 per week, literally overnight. Since the day care didn't work out, we were able to receive homemaker/companion benefits and a young lady comes to our home two days per week for two hours each time. It's not a lot, but my DH has accepted her and I am able to do a few short errands.
I have been involved with two different support groups over the last three years. One is sponsored by the Alzheimer's Assn and meets in the evening. I have either relied on my stepson or a neighbor to stay with my husband. The other group is for spouses only and is sponsored by the adult day care which my DH attended. That group meets in the morning and since DH can't attend that day care, I am no longer going to that group.
I have made it a point to reach out to a few other people I have met who are also dementia caregivers. One is a woman whose husband is in care and I know the days are long for her. I have some great friends who have been good about staying in touch with me. My DH and I didn't really have many "couple" friendships, so we didn't really lose those friendships. I do have some family members who stay in touch on a regular basis, so even talking on the phone is helpful.
The isolation is still there to some degree and I miss stimulating conversation. Right now I'm looking forward to the Thanksgiving holiday, since our two children will be home.
Of course, this virtual support group has been a godsend and I check in every day, knowing that I'm not alone and that help is just a few keystrokes away.