Caring for spouse with dementia. Anyone else going through this?

By the by, I don't work for LifeLine. There are other companies offering similar options. I just happen to pick this company because they met our needs.

I am caring for a spouse with early onset Lewey Body Dementia (he is in his mid 50's). I find that there are things here that are useful. For example, dealing with medicare and information on qualifying for various services, information on medications, information on dealing with behavioral or physical problems and how to take care of myself as a caregiver come to mind. No two situations are identical, but I find I glean enough to make it worth my time to scan the topics in the email and look at those that apply to things in my life.

I took care of my husband... Alzheimer's since 2008, I was 59, he was 70. First thing to go was ability to communicate. No voice, no writing notes, gone the first year, then all facial expressions disappeared too. I never knew if he hurt or if he wanted something. I took care of him at home, by myself, until May this year. Then he moved to an assisted living facility. He died last month. Taking care of him was so hard at the time , for me. Not use to cleaning up like that, feeding someone 24-7, making quick trips to town, no sleep, no friends, etc. It seemed so bad at the time. But now, looking back, I would gladly do it all over again. He was so easy to take care of. I had it made.
I think caring for a spouse is hard. Not only is their life changing so much, but so is yours. My friends disappeared, his friends never called, family never seemed to know what to say..... just a call to say they were thinking of me would have been great. But it is over now. Now my life goes on as best it can. I wish you the very best, stay strong.

The feelings one has with parents and spouses are totally different, it is difficult to see a spouse decline mentally and physically. Contact your local Area Agency on Aging or Bureau of Senior Services, they will be able to give you information on caregiver support groups in your area. I find many spouses at such groups, and it does help to discuss things with others and to share tips.

My husband suffered permanent brain damage from an auto accident in 1977. A few years before he passed away in 2012, he was diagnosed with Alzheimer's, too, so I understand your heartbreak and fears. Be patient and kind to yourself, because whether you realize it or not, you are in mourning. You haven't lost your husband yet to death, but you have lost the man that you married and made a life with. As time goes on, he may seem like a stranger to you. My best advice is to accept any help that is offered. Enlist help from your health care professionals, who may recommend hospice care. Take time for yourself each day to do something you enjoy or find relaxing. Share your concerns and feelings with those you trust and don't try to go it alone. Try to focus on the good times you had together. Know that you are blessed to be able to care for him at this time when he needs your love the most. 'Sending you a hug and a prayer for patience, strength, and courage.

For z gin dementia spouse. ..yes I too have a hubby w altz..dementia and diabetes. .I finally put him into a nursing home..because he. I could not go through another day w all the falls he had because of uncontrolled sugar balance...not sleeping..dementia pts wander at night..and he wd forget when to take insulin and pills..it all become a nightmare. .went to an elder lawyer..filled out paperwork for. Medicaid and mass health got approved took a long time...he spent all his retirement monies on gambling..I wd say to yo. Go see a elder lawyer..then senior care in your city and apply for in home care for him and you for housekeeping. Shopping. Laundry
Do not wait. Since all his problems get worse..

Yes, I am also caring for my spouse, He has FTD (Frontotemperal dementia) not too different from ALZ and he also had a stroke which wiped out his long term memory and is now fighting with ALS (Lou Gehrig's Disease). You are right - it is different to care for a spouse than with a parent. You should try to go to some support groups they are extremely helpful. I'm sorry you are going through this - it's a tough road, but you have to be strong and take care of yourself.

My husband is 84 and in the early stage of dementia. He is able to do many things for himself, even drive to familiar places around town, mow the lawn, play the piano and enjoy church on Sunday. However, after removal of a very large brain tumor 6 years ago he has short term memory loss which includes not being able to call things by their right name. Once an avid reader, he can't seem to focus and many times just stares at the TV without being able to tell what the story is about. What is disheartening to a spouse caregiver is that the demented spouse has changed from the companion they once were to a more dependent individual who is no longer intimate; no longer a good conversationalist and must be cared for like you would a child. Its a lonely position. However, remembering the prior days and years and the fun times helps along with hobbies and church functions. This year I made 100 beautiful Christmas ornaments for our Seniors Lunch. Reading, writing, journaling helps to give balance to days and weeks. I sincerely advise journaling what the care receiver did and said; and how you feel about it.

yes I am helping my mom and its so sad and frustrating but Im thinking thats my mom and im getting the privilage to stay with her and help. I know its hard keep trying and praying

Yes, I am doing that.

I went through taking care of my husband for past two yrs w dementia altzheimers uncontrolled diabetes. ..many falls w lots of bangs w bruising. .nothing is the same anymore..no sex..he also has e.d...incontinence. ..leakage. bm...up all night...wandering all night..l

I am a daughter of a father who has dementia/alzheimers and he is 91, my mother 87 was trying to handle my father. It depends on your situation on how much you can handle. My mother with arthritis was finding it very hard to deal with my dad, could no longer help to bath him, we had someone come in once a week, but even just helping him walk to bathroom was playing my mother out, the endless nights of him wandering thru house kept her awake (she is also diabetic) and her nerves could just no longer handle the stress, which didn't help her diabetes. So I would say IF you can handle your spouse, that is fine, but if you have a spouse that is combative, hard to handle, calling for you constantly, and you have health issues also, I would say it is better to have them placed so YOU can take care of YOU and HE can be cared for also. You can visit every day. My mother was at her wits end and no doubt she would have had an issue that would have taken her to the hospital before my dad did (he fell 2 times in 24 hours and my mother could not get him up).

Thank you. My husband was diagnosed around about 5 or 6 years ago. He was getting forgetful at first but I didn't really think it was anything. His driving was really getting dangerous. He would drive thru red lights and stop signs. It is a miracle we weren't killed or killed or injured someone else. The only way I could stop him from driving was to not register his car and hid the keys. He couldn't work and stayed at home while I worked. For several years he would cook meals for me and do chores, feed the dog etc. Then he just stopped doing those things. He was also babysitting our granddaughter for about 30 minutes until I arrived home from work. I would find him sitting holding her to him as if a panic. Apparently, that is the way he sat with her the entire time he watched her. Then he began to ask where she was, when she was right in the same room. I quickly had my daughter make different arrangements for the child. Well, needless to say things are indeed getting worse. He is still able to care for his hygiene to a point. But for the most part, I have to do his complete care before I go to work and in the evening. I am fortunate enough to have him in an adult daycare facility. The facility has been a cause of stress for me, but I am going to be stressed by this situation one way or another. Each day, when he gets angry for no reason or when he tries to speak to me and cannot express himself, or when he urinated where he shouldn't, I think that this is the last straw and I want to put him in a nursing home or just go running from the house! But I really don't want him at the mercy of non-caring people. So, I try to hang on.

Some days the sadness of it all nearly overwhelms me. We've been married for 58 years and it all seems like a dream now when I think back how we took it all for granted. Now I know we'll never have another big family gathering at out home or at our cabin because it's too stressful for him. Never gonna dance all night again or play pinochle all night with our best friends, or go for long walks along the river or watch him roll on the floor with the latest great grand child or discuss anything important or read the paper together in the morning and discuss the latest issues. Thank God, he's still his mild, polite, loving self. I can't imagine how hard it would be if he had turned sour and surly. Those are the caregivers who really deserve our compassion and prayers. Alzheimers's is such an ugly disease. It comes like a thief and steals our loved one when we're not looking and leaves a shell that we will spend a long time caring for. Then a stroke on top of that has left him nearly helpless. Oh God, please don't desert me.
Thanks for listening.

I am currently caring for both parents, in different stages of dementia, and from afar, but I'll be looking for this kind of support too, as my husband has recently been diagnosed with Parkinson's at age 68. I know there is a dementia component to Parkinsons. I have my down days, when I wonder if I will have the ability to help him....when, in my belief system, I need to be there for HIM way more than for my parents because of our marriage vows. We will be married 50 yrs next July. He is my best friend ever and I am dealing with how to make changes NOW to long term plans for my parents (Dad is almost 93 and Mom is just 89), to assure I have the health and energy and lack of depression to give my husband the best I can. These things are easier as WE caregivers get older either. I am now 70. And the 5 hr trips to Tucson re: parents have increased to about twice a month on average, with a 4-7 days stay each time. I am finding that I just dread the driving lately, and having to be away from hubby and my own home for the increased time. The stress here since Thanksgiving has started an 'intervention' from our daughters, wanting me to take some action now to get more help and to consider getting both parents into a facility together, either in Phoenix where youngest daughter is and could help or up here by me, so I don't have to travel to check on them. A plan comes with lots of stress....dealing with their home, and all that's in it....finances, now moving to qualifying Mom for assistance .....and I've already been doing all this for three years. Yet....I think I have it good when I read the issues with all you caregivers who are smack in the middle of the direct care yourself! I WANT to do that for my husband.....but the older we both get, the less ability I'll have left. I need to lose weight, work out, build up muscles and I've already convinced him to ask for physical therapy to get some exercises ordered that will help keep him ambulatory as long as possible. And knowing what I've learned from this group....it will just be doing the 'spend down' and getting qualified for assistance and getting helpers in the home to assist with what I cannot do. I hope by the time I need help for him, there will be even more coverage to keep people at home with their loved ones and in home assistance.

Ten weeks after retiring from 40 years University teaching my husband was diagnosed with LBD. That was four years ago. I am truly lucky because I live in Alberta, Canada and our health care system has a program called "Self- Managed Care". Every month I receive $5,900 CDN to pay our live-in caregiver. I became her employer and am responsible for paying the employer share of pension and insurance all of which is covered by the monthly amount (I pay her $19/hour). By her choice (she supports an extended family in Kenya) she works Monday, Tuesday and Thursday from 10 am to 10pm and Wednesday and Friday from 3 pm to 10 pm. My husband attends a Day Program on Wednesday and Friday from 9am to 3pm. I take over the care of my (71 year old--I am 61 years old) husband from 10pm to 10am and the 24 hours of each weekend day. I choose not to change our caregiver for room and board etc.
This is my second marriage. My first husband died when I was 34 years old.
I have a number of chronic illnesses--PTSD, chronic pain syndrome, chronic fatigue syndrome and now, a new diagnosis of high blood pressure and a heart murmur.
I choose to give up my highly paid and highly prestigious employment to care for my husband. Even though I have all this "free" time I am truly never away from caring for him. His social life is busier than mine!! We are so lucky with the friends he has -- neither of us have family in Canada. One couple take him to see a movie every other Saturday. Another friend/colleague takes him to brunch the other two Saturdays. He also has a volunteer visitor who takes him out two afternoons a month. (As I write all of this down I am aware of how many of you are totally alone, without personal, professional or financial support and I have to ask myself what gives me the right to feel stressed all the time.) Since he is no longer able to drive I am his chauffeur but when I leave him with his friends I get a chance to go grocery shopping etc.
I am/was a Palliative Care Nurse and started my doctoral journey a number of years ago. I am now reaching the dissertation stage. As part of my research I kept a two week journal as a spousal caregiver and then analyzed the contents. My biggest surprise was the realization of how much I am grieving--not for the loss of my marriage--I am more like his mother--and not for the loss of the wonderful life we had. What I AM grieving for is the loss of the life we should/could have had.
I agree with others here who have written about spousal caregiving. Caring for a spouse IS totally different from caring for a parent or even a sibling. My biggest heartbreak is watching the look of puzzlement on his face as he tries to interpret what is happening to him. When he is aware of our situation he apologizes to me--as if it was his fault. The only thing I can tell him is that this is our new reality, that it is not the life we would have chosen but we are luckier than most. We have a roof over our heads, food on the table and people in our lives who believe that he is of value, that he is loved and that he is important. This seems to give him some degree of comfort. We just have to learn to recognize and cherish the gems that present themselves in our new lifestyle.
Perhaps it is a bit close to home for me but my research topic relates to spousal caregivers and how the diagnosis of their spouse with a life-threatening or life shortening illness impacted their relationship with their God--whatever "god" might mean for them. I am not particularly religious (I have the Irish Catholic guilt with the Irish Protestant work ethic!!!) but often came across this topic in my work with terminally ill patients.
During my reading for the analysis of my two week journal one thing came up time and time again--If YOU, as caregiver, do not look after YOUSELF, you will be unable to look after anyone else. One of the greatest gifts I have been given is my sense of humour. Without it I would have died long ago!
Shirley, like your husband, you will have good days and not so good day, even good minutes and not so good minutes. That is the nature of dementia. The thing you might remember through all of this is that you can only do the best you can with what you have. Do not let ANYONE, not even yourself use the word "should". It has to be one of the most destructive words in the English language. This is a wonderful website. Visit often and take from it what works for you. Sorry to have gone on for so long. Sometimes I have to remind myself how much worse things could be. Take care and be good to yourself.

I care for my wife who will be 79 this month. her situation gets a liitle worse each month. I find it difficult to involve her in doing even basic things as she can not organize or put things in the right place. She changes clothes two or three times a day and never hangs anything back up. Shoes go in waste basket, etc. She is in hover mode now as I can not go anywhere that she does not soon come to sit with what i am doing. She can not remember where we are going when we leave house, doctor says no driving for her. She wants to help but messes anything up and even stops washing cycles on dishwasher and laundry. ??? your comments

Hi Shirley,

My husband has vascular dementia and ste\inosis in his right leg. The stinosis is incurable but is not progressive. The dementia is progressive as you know. He is unable to use a walker or cane to help with walking as it gets in his way, he lifts it up to get it out of the way, and it causes him to fall. I am trying to get the owners of the building where we live to put up a banister in our long hall from the kitchen to the bathroom. That would be a sturdy hold-on for him.

I am a member of two caregivers groups that provide so much insight for me on how to handle situations. I finally realized that I needed help, so I have someone come in to do housework and laundry. This has been a great relief, so I can spend that time with my husband. I like to take my husband with me shopping, and for drives. He is incontinent and refuses to wear pull-ups (that's why I have so much laundry) which has really stopped doing this socially.

I highly recommend you got on YouTube and do a search for Teepa Snow. She is completely amazing and teaches us how to understand all forms of dementia and how to respond in a positive way to our spouses (parents, etc.) She has turned my life around. It is hard to get into our spouses head, but they cannot get into ours, so that is what we must do.

One new practice that has helped me a lot is taking three deep breaths 2, 3, or 4 times a day. It's amazing how it calms me down. AND, it doesn't cost a penny!

I wish you and your spouse happiness on this journey that we are on, a journey we didn't ask for, but is ours to live.

Your sister in caring...

Thanks to my daughter for sending me to this site. Such helpful comments from others. I, too, am caring for a spouse with dementia. He's 88, I'm 91 and it's not getting easier. Although he still gets around and manages his personal care, he is having more short term memories, i.e. will ask what he had for lunch a couple hours ago. He uses a cane to get around the house but I think he will do better with a walker (I lend him mine and it seems to help). Life is easier if I can avoid arguments over trivial things, like what to watch on evening t.v. We don't agree on what would be interesting! He would do better physically if he followed doctors' directions to get some exercise as his posture is getting worse. Once a very outdoor person he now doesn't even go out to feed the birds. Sadly romantic feelings are virtually non-existent after 61 years of wedded 'bliss'; his language when upset is foul. I often wonder how much longer I can keep my own physical and mental strength up. It's thanks to a loving, caring daughter that keeps the two of us going!

Thanks to everyone caring for a spouse. I am 96 caring for a 96 year old husband. I just say a lot of prayers. I just meet each day and try to meet
the problems. Enjoy your comments.

88 & 96 yrs old & caring for a spouse? What am I complaining about at 68 yrs old? Fortunately your spouses have lived long lives. My husband is at the end at 63 yrs old. This will get worse. Once it's affecting your health, you have to get help. This is not a journey you will be able to finish at your age. The past 5 years have been like a war zone. Now he is dying & so frail. Please don't put yourselves through this.

I, too, am caring for my 84-year-old husband with early Alzheimer's. It's heartbreaking to see the person I love slowly disappear. Fortunately, he is quiet and relatively functional. My best advice to you is, keep checking this site, and don't hesitate to post questions. I have found much help here and it is encouraging to know that we are not alone with our concerns and problems.

My husband, 78, suffers from Korsakoff's Psychosis, an alcohol-related dementia. While he remains sufficiently articulate to be otherwise convincing to those who don't know him well or see him often, I am acutely aware of his repetition, short-term memory lapses, confabulation (where the brain draws a blank & fabricates something to fill in the blank), ego-centrism, and temper tantrums. Groups such as this one provide wonderful feedback and support, as do family & friends. It also helps immeasurably to stay active, exercise, and take care of YOURSELF in this extremely challenging situation.

I am 75 and my husband is 80, we have been together for 55 years. I am the one who is the patient with Dementia. I am usually pretty good, and he takes very good care of me. I can't do to much except work on the computer. I also take care of myself and make my bed & clean my bathroom. He does the cooking, and we have a lady that comes every two weeks to do the wash & clean the house. We have all decided that she will start giving me personal help when the time arrives. We get meals delivered 5 days a week & my husband takes care of the weekends. I get around with a walker. He lays my meds out for me & serves each meal. Since I haven't read of a combination like ours, I thought I would bring ours to the fore front. We have made plans for the rest of our lives, whatever that might be, and we are happy & satisfied with our decisions.

I also am caring for my husband, a disabled vietnam vet, who is starting to have some cognitive issues and a whole slew of medical problems. I also care for a daughter who has suffered many head injuries which have resulted in alot of cognitive problems for her and she has medical issues that usually affect someone 20 years older than what she is. Not sure what caused all her medical problems at so young an age. While she is still able to do things physically, it's the mental issues that cause so much stress as she can become combative and aggressive. My husband forgets alot of things, like taking his meds, and has more trouble getting around. It is harder, I think, taking care of a spouse. The worst part is they won't get better. It continues in a downward spiral. We don't get help from anyone else--including my two other children. My oldest grandson, however, tries to come up and help whenever his mother allows it, which isn't often.

Herbalist, perhaps when your daughter needs help in the future - her son will remind her of her refusal to help her parents & sister.

wow I am amazed to see all the ( new to me) spousal names on this thread, I am 69 my husband 84, he is mid stage AD, still doing ok with toileting, eating, doing small jobs around the house, lately he has just about forgotten the names of things ( aphasia?) so although most of the time he's a non stop talker, we are running into a communication situation as he gets upset that I cannot understand what he wants or needs, I started labeling many things, that has helped immensely. Today his Grandson, wife and 2 yr old Gr Grandson came to visit, my husband would not come down to see them because he did not understand who they were, he finally gave in and came down just as they were leaving, he has no recall as to who this family might have been & now it's been causing agitation in him all evening. I am with him 24/7 one daughter ( his) is a forever NO show. I keep it pretty structured here and it works well for us, everything I do - I do for him, always smile, try to hang on to an ager till I am out of sight, which is not very long as he's a " hoverer " also. Life is what it is, just look deep inside of your spouse and you will feel and see small sparks of recognition and love, maybe I'm a dreamer, but it's the only way I'm going to make it through this. God Bless all the caregivers and especially the spouses ~ you are very special indeed!

My wife is in assisted living. I see her decline weekly. I guess my most important job is making her as comfortable as possible. She is in the later stages of dementia. I see her daily & it is heartbreaking.

Thanks to all the wonderful people who have shared their stories. This forum is a god send to all who are going through this ordeal.

Another thing has occurred to me -- perhaps many of you have noticed this as well. My husband mirrors my moods, and I find life has become a bit smoother now that I'm making a concerted effort to project sweetness, love, and positivity, rather than letting him witness my frustrations in dealing with our situation.