how to find patience

SparkleMonster

I know this is not a new topic and many of us are dealing with it. Sorry in advance for a long post. I'm fairly new to alz and have been hesitant to post or go to counseling because I just feel like I'm complaining. I'll make the story as short as possible. My fathers living circumstances changed Fall of 2020. At this time my siblings and I realized some significant signs of dementia and knew if he lived alone, he would need assistance. My dad decided to move to the same town where I am with my family and into a really nice senior facility that had levels from independent living to memory care. We thought this was the perfect place. It was not. He hated it there and hated living alone. There were other issues (like him getting confused with meds, calling me at all hours desperate to get out etc.) So ultimately we(my dad included) decided he should come live with us. We sold our house (that we lived in for 16yrs) and bought one with a floor plan that would accommodate his mobility as well as having a nice private room/bathroom. We busted our butts and made this all happen within a 2 month period, which was not easy considering covid and the housing market, a job and 2 kids in school. So we've been living together since Jan. My husband and I bend over backwards trying to make my dad happy, reassure him when he's sad, mad etc. He gets incredibly angry, then so remorseful he cries. He also complains quite a bit. (I'll save you all an hour by not listing the ridiculous things he's unhappy about) It's exhausting...for him and for us. We've realized there's really nothing we can do or say to make things better for him. This isn't a 'solvable' situation and we get that and have to remind ourselves daily. But we are both exhausted and running out of patience and it's only been 6 months. The things he complains about are contradictory, he's limited as to what he can mentally or physically do, and when we do things without him (he always turns down invites to join) he gets angry. My husband and I went to buy a car, we were gone an hour and I get a call 'guess I'm left alone AGAIN. F-U.' then he hung up. He's never all alone and we rarely leave together. I get that this is the ALZ coming out but it doesn't make it easier to hear. I feel like I'm living in an abusive relationship. How do you all regenerate? relieve stress? calm down? avoid conflicts? My husband and I need time to go have a meal, or do things with our kids. I'm really trying hard to not be constantly frustrated but it's been really difficult. Any advice is appreciated and thank you if you've read to the end!

Quilting brings calm

Sparkle.,.. do not let your marriage or your children suffer.  You tried to  accommodate your dad, and it didn’t work… because his situation isn’t fixable.   He’s not going to be happy whether he lives with you or whether he lives at the continuing care center.   

He needs to be in at least the assisted living section of the center utilizing their medication management option if he can’t keep his meds straight.  It’s not a prison, and most of them have opened back up so that residents can come and go and visitors can visit. There’s no reason why he couldn’t live there and you go get him for outings. 

By the way, venting or  talking to a counselor is a valid thing to do for all of us. You aren’t just complaining, you are under a lot of stress because this is stressful. 

Stories like yours make me grateful that I did not invite my parents to live with us. Because it would not have worked and I’d have had to figure out how to get them out of my house. 

Stuck in the middle

You feel like you are living in an abusive relationship because you are living in an abusive relationship.  So are your children.  I don't think any amount of patience will make this situation tolerable.  

Mood altering medications are probably warranted.  If that doesn't bring a major change really soon, your father needs to move.

Your father isn't happy with you, so he might as well be unhappy somewhere else, like the facility he tried when he first came to live with you.  You owe it to yourselves and your children to prevent his illness from claiming all of you.

M1

Agree with Stuck Sparkle. Sounds like you've realized its the disease making him unhappy, not you. Maybe he really needs memory care? Could be that the reason that the previous place didn't work was that he wasn't at the right support level. It's pretty common to underestimate what's needed.

I wonder if it would help you practically and emotionally to consult a geriatric care manager to help make these decisions. Has a price tag, of course, but might be worth it in the long run. Just a thought...

star26

Hi SparkleMonster, I don't thnk you need to find patience. I think that trying to tweak or improve the situation so it's not so miserable for you is the only way to make this sustainable. 

I agree that your Dad's mood has everything to do with what’s going on inside his body and brain and little to nothing to do with things that you can control by bending over backwards. I would guess that he also might not always, or ever, recognize or voice appreciation for all that you and your family are doing and sacrificing for him. The combo of nasty mood plus no appreciation when you are busting your butt for him daily is particularly rough. (Speaking from experience!) 

I like the idea of considering medication to improve his mood. I used a geriatric psychiatrist for my Dad. We ended up stopping a medication (Galantamine) that I was sure was making him extra angry and disagreeable, and adding another (Wellbutrin) for his disinterest in absolutely everything. He was also on another mild antidepressant (Lexapro). He didn’t become happy-go-lucky, but I definitely noticed an improvement that made day-to-day living easier and happiER for both of us.  

Even if your Dad’s mood improves, you may be headed for burnout quickly if you can’t get more respite time in. Specifically, family outings without him (including no phone calls from him) and relaxed and unstructured time in your home without him. Maybe try Adult Day Care for a few hours once a week to start and see if he’ll tolerate that. He doesn’t have to LOVE it, he just needs to behave well enough that you can bring him there regularly. Members here have tips on how to introduce this and get buy-in from the person with dementia. Hiring a professional caregiver to either stay at the house while you’re out, or take him out of the house (or both), is another option. Again, he’ll disagree and be difficult but it can be overcome. If you ask for ideas here you will get tips. 

If your Dad is apathetic (common with dementia) he might just say No to every activity or outing you offer. This might not work with your Dad but you could try just deciding what you want him to take part in and then don’t give him an option. “Dad, we’re leaving in 5 minutes for the park. Here are your shoes.” “The kids are already in the car. We told them you’re coming with us to the festival and they’re excited.” And conversely, decide when he is NOT invited and that’s when you bring in the caregiver or he goes to daycare. If you didn’t have young kids, I would suggest fibbing about where you are going without him (some place unappealing or inappropriate for him to attend) but that may not be possible with kids. (And again, no phone calls from him during your respite. Make an arrangement with the caregiver about how to call you in an emergency.) 

I tried not to engage when my Dad started with angry comments or comments designed to make me feel bad. I'd give a simple one-line reply and then change the subject or leave the room if he wouldn't drop it. A few times, I'd have to wait out a particularly bad mood and just provide a meal and basic safety supervision and that's it. It helped me to keep my distance at those times and maybe it helped it fizzle out faster with him too since he had no one to "fight" with. 

I'm sorry you are in this spot after all you've done. I hope one or more of your siblings are supportive and grateful for what you are doing for your Dad. 

SparkleMonster

Thank you everyone for your responses. Thankfully he is not angry all the time at this point. He is thankful for living here and is very remorseful when he gets angry but it's a long, hurtful path getting there. If I try to leave when we're both upset, he'll follow me to continue the argument even when I tell him I'm leaving so we can both calm down. This is such an emotional roller coaster. I'm just not cut out for it. Someone else has suggested mood medications to me and we will bring it up with his Dr on the next visit. I have never heard of a geriatric care manager but will look in to it! Luckily my kids are a bit older and I'm glad they get to spend time with him and also see some of the difficulties. It's just life. They may be taking care of us one day so I really try to talk openly with them. We have a home care person come once a week. He finally took a shower and shaved (it's been 3 weeks) and I'm thinking of having them come another day but in the evening hours so we have a chance to go to dinner. I wanted to bring home care in when it wasn't a necessity so that he could ease in to having someone here. It's inevitable that they will be needed more and more. 

Thank you all for taking interest to give feedback. Even though we are fighting the same disease, we all have different battles. It is very nice to hear others perspectives. 

Jo C.

Hello Sparkles:   This is one of those situations in which there is no one single answer.  From personal experience with my own initial learning curve, part of the problem is also our own lack of understanding the dynamics.  There is a learning curve to all of this and it takes time and a LOT of knowledge.  Read, read, read and then read some more.  For success, not only you and your husband need to get up to speed re dementia dynamics, but your kids too need some assistance in understanding and in how to communicate to accommodate the moods and said dynamics.   Communications are so important; I learned this the hard way. I also learned the hard way that there were times that using a "therapeutic fib," was not a moral lapse, but was a kindness in calming and also in getting things done, without meltdowns, etc. 

Apologie are extended for the length of this Post, but there is much to share.

It is crucial to have a dementia specialist as part of the care team.  You also need to have an accurate diagnosis for what type of dementia is actually at hand; for this you need a dementia specialist such as a Neurologist who sees dementia patients as a routine part of his/her practice.

Dementia is an umbrella term; Alzheimer's Disease is only one type of dementia; there are multiple others.  That accurate diagnosis is important as meds for one type of dementia can be contraindicated in another and even make things worse.

It would also be a good idea to have your father seen by his primary care MD; this would NOT be for dementia diagnosis and medications; it would be for working him up with exam and labs to ensure there is nothing going  on physicaly that is contributing to the problem issues.  Our primary MDs are awesome at so much, but they are not on the cutting edge of dementia dynamics and treatment.  This is why it is so important to have that dementia specialist so as not to have a counterproductive treatment plan that is confounding things even more.  Sometmes, even a "silent" urinary tract infection, (silent because there are no physical symptoms, but often a very negative change in behaviors), can be the or part of the culprit for problematic behaviors. Happens a lot and it can be pretty dramatic.

As for his living situation.  At the time, family did not realize that your father was not at the level of care he really needed, it was not adequate so failure was built in.  No one's fault, we learn as we go.  His calling you so often, and his being upset when you go somewhere without him is probably rooted in fear and a feeling of deep insecurity that he cannot work out; so he "feels" and acts on those feelings - even though he turned down your offer to have him go with you.  His processing and logic centers are damaged.  Not his fault, but it sure can make things difficult.

If his dementia specialist cannot be of assistance with treatments that help, then consideration for an alterntive living setting may be something to begin to think about and research.  He cannot go and live alone in independent living or even in an assisted living environment that does not have adequate service and oversight.   The dementia specialist will assess all meds and make changes as necessary; there are also meds that can be started at low dose going slow which may be very helpful not only for your peace, but also for his.

NOTE:  If he is driving you to distraction; imagine how it must feel to live inside his head not only believing all his delusional thoughts, but also FEELING them.  Horrible for him.  Only way to deal with them is acting out.

Have you considered looking into Adult Daycare which we NEVER call daycare; we call it the activity center or senior center.  Often, we make plans with the directors of such settings to tell our Loved One (LO) that he or she is working there as a volunteer.  Amazing how often that is accepted and works well.  The person does go to daycare and may help a bit with a few small items, but they are actually getting activity, socialization, and care while the family gets a break.

With my LO, I had to secretly hire someone to come in three afternoons a week to be a, "friend."  Worked beautifully for my LO. Initially had the person come in as one of my friends for coffee and dessert and of course had my LO attend and meet my friend.  After two of those sessions, the person I hired had been wooing my LO with friendship and even called my LO on the phone; time for the next step.  Next time, the person came to visit with my LO; I excused myself with something else and the person took it from there.  The hired person became a fixture; they went for walks, to the park, to the mall to sit and people watch; they went to lunch  with me paying; they watched TV together, did small crafts, etc.  You get the idea.  For us, it worked very well and my LO told me, "This is MY friend, not yours."  Couldn't have been happier.

NOTE:  It is key that the person with dementia have a living environment that has solid routine and structure to all days.  This is important.  Change is our LOs enemy; routine and structure is their friend.  Lots of noise, kids running through the house, loud music, loud or violent TV, a lot of clutter,  sporadic mealtimes and changing bedtimes all enemies of our LOs. 

Having a nice get-away room for only our LO with dementia that is serene and quiet with a comfortable chair, TV and window coverings that can be closed to control the lighting and a closing door can sometimes be helpful.  HIS room, no one elses.  A place to get away when things get too much.

Sadly, there is no way to make him "happy;" he feels the changes within himself, he is not independent any longer; his living setting has changed multiple times - of course he is angry.  Arguing, explaining, educating, correcting him - all will cause more problems.  What is good is not to respond to his words, but rather to respond to the FEELINGS behind his words and validating his feelings. "I am so sorry that happened (or I did that or whatever), it must feel upsetting; I would feel angry too.  I am here and I will help; (or I will do better next time, or I will correct the kids.)  You get the idea. BUT:  When you validate his feelings, then right away refocus him onto something else whether getting coffee and cookies in the kitchen, or something outside the window, or a different topic that would interest him, or even doing a small chore or activity. That breaks the dynamic that had been going on.   His brain is damaged. He no longer has the ability to use good logic or reasoning and his judgment is also compromised.  He has feelings and having difficulty processing them; that is why the anger and lashing out; it is a way of communicating upset or even what he cannot identify that is making him feel so awful.

It may also be helpful to contact the Alzheimer's Assn. Helpline at (800) 272-3900.  If you call, ask to speak to a Care Consultant.  There are no fees for this service.  Consultants aare highly educated Social Workers that specialize in dementia and family dynamics.  They are very supportive, have much information and can often assist us with our problem solving.

Geriatric Case Managers are professionals, usually RNs or a Social Worker who does a deep intake assessment and then develops a plan of care for their client.  They can take over hiring and monitoring caregivers, searching and finding an adequate place to live and also monitoring that; they can go to doctors visits, be a liaison with the doctor if necessary; they can conduct business for the client, etc.  They are not inexpensive, rather pricey but if a person lives a distance or no longer wishes to be managing their LOs affairs/issues and need assistance, if there are assets, this can be helpful.  One of course would want on with experience and who is certified.

There is am excellent online writing  that is well respected and very informative and may also be a good primer for your older kids.  It is written by dementia specialist, Jennifer Ghent-Fuller; "Understanding the Dementia Experience."  Worth reading regarding changes that happen and why they happen.

Here is the link:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

 You are on a good path to find the way to manage all and sundry; let us know how you are doing, we will be thinking of you and we truly do care. In the meantime, I send good wishes from one daughter to another,

J.

rzrbaxfan

Very similar situation here, except that we dove right straight into Mom living with us.  Nothing like hearing "I hate your guts" when I tell her it's time for bed, and hear "I love you son" in the morning.

I'll echo what Star 26 said...look into meds.  I also catch Mom having moments of clarity at times and I try to tell her that she has 2 options:  here or nursing home.  She hates the idea of a nursing home (although she did fine in respite care for a couple of weeks recently)...so that normally sets her straight for a bit.

SparkleMonster

JoC, thank you for your response and all the great advise. He does have a neurologist because (he had a couple of seizures back in Oct), so we have regular appts and follow ups. I sit in on all of his medical appointments and we check in with is primary Dr every few months as well. Every time he changes medication, we go and get a blood test. I feel that he is well monitored in that area. The neuro gave him a diagnoses of mixed dementia for Alz and hardening in his brain (although this part of very small). The neuro also gave us a number this week to contact care advisors who can come in and consult with us. I had no idea this was even a thing, so I'll be calling this week to find out more. 

I understand the need for routine but it's very hard with kids. We generally start off the day in the same way and end in the same way, but the middle is hard. There is school, friends, swim lessons, camps etc. on top of grocery shopping, laundry, taking him to PT etc. I know I have to learn how to react differently to these situations. My daughter is on the autism spectrum, it was the same need, we had to learn how to deal with situations differently then we did with our son. But knowing this and DOING this are two very different things. lol. which is why I'm trying to find ways that I can practice patience. I try to go out when he's occupied (with home care or PT), sometimes needed errands, sometimes just wandering Target or out walking on my own.

The balance of giving my kids a quality of life, giving my dad a quality of life and having one for myself and husband feels impossible at times. Thank you all for the comments and support. How thankful I am that there is this forum to share and to support each other.