Hi Everyone,' I am new to this group. The reason I am here is I am the caregiver of my DH who has AD. He is in moderate to severe stage and I am becoming more and more isolated. No one knows what I am going through . I fear for the next stage because I am having a hard enough time with this right now. I guess I am looking for someone to commiserate with and will understand what this terrible disease does to a marriage.
Welcome, Blondie49. Yes, as Charlotte said, the people here "get it", when most others don't. The isolation is something most of us have experienced. It seems to go with the territory. It helps to try to take care of You while you are taking care of him. Find small things to do or experience during the day that nurture and relax you--for me it was always that first cup of hot coffee out on my screened porch...sometimes only five minutes of quick sipping before I had to go and attend to him--but it helped. An inexpensive, non-stressful hobby or interest that you can do alone and that you can pick up and put down is good, too--I read a lot of paperbacks, and I know some people do knitting, or crossword puzzle books. The computer is a godsend, of course, but you don't want to over-do it--makes you boogity-eyed--ha,ha.
Welcome...you said no one knows what you are going through. Well, you have found a safe place here where everyone knows exactly what you are going through. Sorry for the circumstances that brought you here but we are all here to love, support and encourage each other. And, "we get it".
Blondie49, you have found the place where EVERYBODY knows what you're going through. Unfortunate that it has to be this way, but so fortunate that you found this group.
Welcome Blondie49. This group gets it. Here you can say or ask anything and just vent. Someone will chime in to commiserate. Someone will chime in with a brilliant idea you didn't think of or another way to try something. The gals and guys with an asterisk and sometimes a date are ones who have lost their significant other. They stick around to help us who are still in the trenches and also to help each other deal with the "after" issues - which are not easy either. When Myrtle chime in be sure to click on her name to see her profile. She created a she-shed called the hermitage and there is a beautiful picture there on her profile. Like our imaginary Christmas Lodge (I never would have survived this Christmas without that) sometimes we "meet" with myrtle for some tea or wine in her Hermitage. If someone not in alzheimer world told me about the super healing powers of these imaginary places I would have thought they were crazy. I will be outside cleaning the pool and fuming, once again, about his insistance on getting a retirement place with a pool and lawn and 2.5 acres of brush to clear, and his promise to take care of it all ..... So I go to the Christmas Lodge or the Hermitage in my mind. Things are constantly changing. Just when you think you found a way to deal with the current situation..... he takes a leap off in another direction. And you start over. I love the search function on this board. Any topic - search will turn up discussions from years ago filled with brilliant tips.
My DH is probably in a similar stage. I can leave him alone for a few hours. He doesn't wander. He doesn't remember how to do anything any more and though he talks a lot, there are no nouns any more. Just have to guess what he might need or want. And heaven help me if I guess wrong! Or infer that he did something wrong or might need help. Anyway, we went through a period where it seemed like he had entered the incontinence stage. Seemed early for that. Turned out some people become lactose I tolerant with age and it can slowly get worse. I am changing how I cook and we haven't had explosive diarrhea since those changes. He can tolerate small amounts of cheese and skim milk, but no more cream cheese.
He was also having wet pants in the evening. I finally switched to nonalcoholic beer and his doctor prescribed Flomax. No more trouble. (Flomax relaxes the muscles around the urethra. He took it before the treatment for prostate cancer years ago. Prostate is still fine, but Flomax is certainly helping make him more comfortable and less frequent bathroom trips. He takes the generic.)
Sorry to go on about this. I just want to point out that sometimes Alzheimers is not the cause. It was definitely worth the trip to his doctor to ask about this. I will do that whenever there is a big change.
One thing I haven't figured out is why bother to go to a neurologist. We both didn't like the one who diagnosed him and won't go back to him. Mostly because I asked for copies of his reports and he just copied notes from someone else. It had no relation to the discussion he had with us. I haven't been able to come up with a reason to go see another one.
Hi bhv, I'm glad you have found some peace in the Hermitage. It sounds like you have done a great job unravelling the strings that were causing your husband's various symptoms. As far as a neurologist goes, I don't see what the purpose is once the diagnosis is made. The neurologist we went to was also very bad. I think his only value was to rule out other possible causes of my husband's symptoms by looking at the MRI and ordering an exam by a cognitive psychologist. (My husband's PCP did not feel comfortable doing that.) Even after all that, the neurologist misdiagnosed my husband but fortunately, the cognitive psychologist did not.
Isolation and boredom his and mine are definitely a issue. My Dh started daycare 3 days a wk and it has saved my sanity. Just knowing I have 3 days a week 5 hrs to myself is mood lifting. It is not a cure all but it helps. Before you say he's not ready give it a try. I was one who thought I would never get him to attend. He goes willingly most days and honestly it beats what he would be doing at home. If not daycare some help inside the home but you need a break and it's up to you to make it happen. I'm telling you this becaus I was in your shoes and the people here encouraged me to get help. Good luck
Thanks Myrtle!!! I was hoping you'd stop by. Been meaning to thank you for sharing the hermitage. And thanks for the feedback re neurologist. Thanks too Onewife. For now he is ok on his own for a few hours. I need to go out more often. I didn't like the day care outfits nearby. I think he is better off here, even if alone. It is a tiny bit warmer and he actually came outside to try to "help" me a few days last week. There's lots of work to do this spring. Maybe I can find a way to work together out there.
Like Onewife, I look forward to my 3 days of free time. Unfortunately, that time seems to go way too fast. What frustrates me is the times they pick him up and bring him home. Pick up can be from 8:15 to 9 and bring him home from 2:30-3:30. A lot depends if the regular transit dial-a-ride does it or The ARC. I prefer the ARC because those drivers seem to be the same ones more often, they greet him with handshakes and the joking starts immediately. He is laughing when he gets off the bus. I don't know how many others ride with him since he is first on and last off. But, I so love the 5-6 hours I get even if I just sit here by myself playing games and watching/listening to TV.
Blondiee49 - welcome to the group. You should find this site provides solace and support as you go through this alz journey, no matter where that journey takes you. I don't post a lot but I benefit from coming here. I offer support when I can and try to help others here as well. Everyone here gets it and knows what you are going through. When this disease strikes your spouse/partner, it is completely different than if it's your father, mother, sister, brother or grandparents. We are all here for you...