Trying to cope and have patience

Grandx7

I am new to this site but having been dealing with my husband's changes for over 15 years. He was finally diagnosed with FTD, vascular dementia and Alzheimer's about 2 years ago.  The last year we have seen much greater changes and it seems daily has a new look.  He is still driving and pretty much handles his daily needs - with some prompting and help from me.  Hygiene is not of great importance to him.  He used to be impeccably groomed and put together.  He still is able to go hiking alone but has been losing items along the way about 2 times a week - keys, credit cards, money clip.

His appetite has changed dramatically the past 6 months - carbs are a major staple of his diet now.  And sugar. He has always been very fit and never overweight.  His pants are now too tight for his comfort and if anyone mentions altering his food choices, they are deemed as against him.

I deal with him being angry with my at least once a day and it has lasted for as long as 3 weeks.  Because our 4 adult kids have mentioned things to him that might help him, he has now stated all 5 of us are against him and he wants nothing to do with the kids.  I am somewhat ok in his eyes as I live here and he is dependent on me for organizing, feeding, etc.  It is very difficult for me to hear him say negative things about our kids - I know it is the disease and not him but it is still heart breaking for me to hear.

I am wanting to know how others have managed in these difficult situations.  I feel like I am mourning the loss of my husband.  We are retired and can't do things to enjoy this time in our lives.  No longer are there conversations about anything that contains a complete thought and being able to discuss and share information with him- it is difficult if not painful.  Frequently I am having to retreat to another room or outside because I am in tears.  He gets upset with me when he sees me cry.  Occasionally he has apologized for being mean to me but usually he just says it's his "stupid brain".  I tell him it's the disease.

Our roles have done a 180' with me being the one responsible for all decisions about finances, daily activities etc.  I have been doing all things associated with technology, house repairs and yard care for years and had assumed that he was just being lazy or just didn't want to do these things.  It was 2 years ago that it was very clear that I had been in denial and blind to what was occurring - I am a retired nurse and have been hard on myself for not seeing and recognizing the signs earlier.  

I am looking for help on how people cope daily with the stress and loss of the spouse I have known for over 43 years.  When needed, I will look for someone to come into the house to assist us both.

Thank you in advance.

Quilting brings calm

Please get the book the 36 hour day.  Please make sure you have both a medical power of attorney and a full power of attorney.  

Please take his keys.  Someone diagnosed two years ago should not be driving.  Your insurance would  probably not cover him in the case of an accident.  

Buggsroo

I read this and honestly feel the same. My husband is a lot like yours. 

Luckily he doesn’t drive, he pranged the car and now we use Uber. I don’t have children with him, he has three from his first marriage. I am afraid the patience thing is an ongoing battle. Sadly, it is tough to deal with the changes. My husband will eat bowl after bowl of ice cream. He wants his dinner at 4 pm and he goes to bed about 5 or so. 

I really sympathize with what you are experiencing. It is tough to go through this. I deal with temper tantrums, sarcasm and profanity on a day to day basis. I would advise you to get your paperwork in order, deal with the finances etc. You will no doubt, be taking it over.

I understand the tears, the person you loved is no more, there is a stranger who used to be your husband. Keep coming back to the forum, it has helped me so much.

LittleVolcano

I feel your pain, some directly, some indirectly because I'm the daughter not the spouse, but I watch what my Dad--husband of 50+ years--goes through with my Mom. Mom rarely recognizes him and is quite rude to him. It breaks his heart every time. And it breaks my heart when Mom talks badly of my father. Just this morning, my Mom mistakenly thought my brother told her that my father was on his way home from his fishing trip, and she was miffed because Dad had told my brother and not her. I checked with my brother and he told me that he had told Mom that Dad was coming home today (which is true) but NOT that he was on his way home now. Mom wouldn't believe me that she had misunderstood my brother and continued to be mad at Dad for leaving her out of the loop. My Mom, at this point, can't be reasoned with, and it hurts me to no end to hear this disease badmouth my father (which I imagine is how you feel when your DH badmouths your children). Most of the time I just walk away and don't listen. Sometimes I defend my father, which is futile, but it makes me feel better.  

We're all mourning the loss of my mother. Dad is up at their cabin with his brother taking a fishing break this week, but he says it's not the same without Mom. I stay with her when Dad is gone, and all our conversations are either small talk or don't make sense, and I just feel uncomfortable around the disease and caregiving in general (but I fake it well). And Mom is resistant to being helped a lot of the time. She doesn't like anyone cooking in her kitchen and will get snippy (I just ignore it). She doesn't want me helping her wash her bedding, even though it's been months (I lie my way into getting her to do it). Luckily my Dad had 18 great years with Mom after they retired, but that doesn't make this any easier for him. He's lost his wife and I've lost my mother, and this monster of a disease keeps pushing us all away.

My Dad is now doing everything that Mom used to do--on top of what he already does--and while he's gotten the hang of it, it's all very stressful, especially since the person he's helping outright rejects him (although on good days, Mom will still help right beside him, as long as he's not doing something that's traditionally her turf).

My brothers and I help Dad out by calling or stopping by when the disease is at it's worst and sometimes "picking up the needle" if Mom becomes a broken record. I stay with Mom if Dad is going to be gone for a long time. I walk with Mom a few times a week (she won't walk with Dad anymore), and I bring dinner by a couple times a week (she only knows how to make sandwiches now which she eats for breakfast, lunch, and dinner, and rarely lets my father cook for her). For the most part, when Dad needs a break, my brothers and I take over. 

I'm going to try to get Mom into a community center program for people with dementia (I refuse to call it Adult Day Care, which sounds patronizing). Mom loves to help people (to the point that her mothering becomes smothering), so I'm hoping we can join one as "volunteers" and she can find a place to fulfill her unquenchable desire to help others (I sincerely feel she could help others with dementia who are further along than she is).

I can't say that my Dad or I are really coping with the stress "well" yet (we're 4 years in). I think he and I push ourselves to the brink and then collapse. But we're learning. We're forcing ourselves to take time for ourselves and try to find happiness in the small things. I emphasize to Dad how important it is for him to take breaks, and he understands that, but honestly, it's really hard to get what feels like a proper rest, especially since, for my Dad, a real vacation involved my Mom, and she can no longer be there. For me, when I'm here, I take a 2-hour "nap" in which I just chill out in the guest bedroom and watch shows or play games on my computer. Sometimes I will actually take a real nap, which does actually recharge me a little and I feel more patient and happy to hang out with Mom when I wake up. You'll figure out where your best stress relief lies. Just keep experimenting and adjusting. At some point we're going to have to hire help, but Dad's not ready for that, and I'm not a very trusting person, so I'm frankly not read to open their home to strangers yet either. Mom would be resistant to outside help anyway, so we're kinda saving that one for when we really have to.

Not sure if any of that helped other than to say that you're not alone and we're all struggling. Keep throwing things at the wall and see if they stick. That's my motto for dealing with all this.  

Sending you big hugs and infinite strength.

JDancer

I'm so sorry you are experiencing this. Many of us have similar situations, myself included. 

Pauline Boss writes of our "ambiguous loss." Our loved ones are physically present, but mentally gone. It's an unexplainable grief.

I worry about your spouse hiking alone. Hiking alone is never safe, especially when the hiker might get lost or forget how to use a cell phone.

It's difficult to manage all the household tasks, while also providing care. Please take care of yourself, also.

Rescue mom

There is too much here, that all sounds too familiar…You are not alone. Keep coming back to this forum. You find solutions, advice and support for everything. The loneliness is the worst thing, for me. There’s no solution, but at least I know I’m not alone in my feelings. A real-life support group helps, too, especially finding about help available locally. And no one else understands what caregivers face.

Just a couple things: Right now, Google a piece that’s free, online: “Understanding the Dementia Experience,” by Jennifer Ghent-Fuller. About 25 pages, the best resource I’ve found. Someone here may provide a hot link, but it’s easy to Google.

The other thing, don’t tell him or keep reminding him he has a dementia. He cannot process that, he will be angry, and it costs you energy you need for other things. You learn to say, “yes,” or Ok, and agree a lot—and  fib, too, to keep peace. There’s no use trying to convince him, his brain is broken, and he cannot handle rational argument or debate.

You are grieving the loss of a spouse, and the loss of your life, too—the life you knew and expected to have. A body is there, but the person is gone. It’s hard for us to understand, much less others. We have all (I think) been angry, cried a whole lot, wished it was different. Somehow we find the strength to keep going.

As others have said, the driving can very quickly turn into catastrophe, and you could lose everything. Driving with a dementia Dx may cancel your insurance, and definitely leaves you open to a world of lawsuits, regardless of legal “fault”. Just him being behind the wheel with a dementia can cost you everything. Some lawyers look for accidents involving elders, just in case they have dementia. It’s an automatic win. There’s been lots of threads about how to get them to stop; sounds like it might take some of those fibs….

Ed1937

Grandx7, welcome to the forum. Sorry you have to handle this. Here is a link to what Rescue Mom noted: http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

Grandx7

Thank you for your suggestions.  I do have all of the powers of attorney and Trust covered but it didn't occur to me until you mentioned the legality of him driving and another post below about the "hungry" attorneys that might look for those factors.  (no offense to any attorneys out there.)  And I will look up that information.

Grandx7

This is very kind and understanding group and thank you.  While I have been rationalizing in my mind what has been happening for many years, it is time to face the hard facts and finish getting things in order - getting him to stop driving.  How do you go about this with someone who seems like he's capable yet can't remember where he put his personal belongings?

He frequently talks about his father and wanting to visit his father's home town and grave.  This is just new in the last 6 months.  When my parents were fading - both were in their 90's when they passed - they reminisced about their home towns and things they did when they were young.  I don't know if there is any correlation to this being a sign with MD and the end being near, or that he is going back to a place he remembers more clearly than the present, or if is just a passing phase before he loses even more of his mental and physical faculties.  

I have never been very good at seeking help but am grateful for all of your input.  Thank you!

Ed1937

Grandx7, There are several videos on youtube. Here is one , and you can search for others by searching for "dementia car keys" or "dementia driving". How to stop your loved one with dementia from driving 

Ed1937

Also check out "Solutions" from the top of the "Message boards" page.

sandwichone123

Everyone has great responses. When my dh was diagnosed with a terminal brain illness (AD), I threw all ideas about healthy eating out the window. For dh and me both, the worst outcome would be for the body to stay healthy long after the *person* was gone, so I figured if ice cream makes him happy right now, he should have it. Increasingly, *right now* is all we've got.

Buggsroo

My husband eats multiple bowls of ice cream a day. Now I don’t bother about it. I make frozen food entrées and ready made food. It makes life easier, I am a vegetarian, he isn’t, this kills two birds with one stone. 

I want him to be happy and that makes him happy. I have thrown the rule books out the window.

jfkoc

Please get someone in asap. You have no idea how a new face helps....someone to talk to and to get some of the "have-tos" off your plate so that you can relax with your husband.

Do whatever yu can to put your lives on slow motion meaning simple meals, watching TV together, walks or drives and do stop at a playground and witch the children play. Get some paints and paper and sit togather and create...even if you just paint a rainbow. Let go of what is not imperitive and be with your husband. 

The mourning I can not help  you with. It has a life and a will of its own and it hurts.